tag:blogger.com,1999:blog-85339118314001928482024-02-27T01:43:10.771-05:00Here's Your Gold Watch - RheutiredA blog about patient engagement in healthcare, rheumatoid arthritis, and coping skills with chronic illness, along with some practical ideas and personal strategiesAnethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.comBlogger268125tag:blogger.com,1999:blog-8533911831400192848.post-14708973316802499102019-02-25T23:15:00.001-05:002019-03-03T12:08:16.138-05:00Patients as Partners in Health Research<div class="MsoNormal">
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">When I was diagnosed with Rheumatoid Arthritis (RA) it was pre-internet, near the time the VIC 20 came out. (it had 20K capacity but only 5K was usable memory)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">VIC 20</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I managed to live with the RA and work up to retirement when I suddenly had 50 hours a week to do whatever I wanted. Learning a new language and catching up with my <a href="https://www.pinterest.es/rheutired/vintage-paperbacks/">book collection</a> </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">had less appeal than I expected so I adapted the idea and decided to learn to speak "medical". When the chance to change gears finally came,</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> patient engagement and working for change in health care looked more interesting and rewarding. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> </span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDEqive4S8IoSayMaFgQ-C5jNucqsdJBrpi1Ke-8H6myGGTgaMXu8hBu2HhSeafCCZ6h6sjiR17fGjrR7tGksmlXHHDL3T8F_hgtygEqT7ABPPW_m4oTZqTVRtgUkF8LC2I6159QL83fs/s1600/roar2014.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><img border="0" data-original-height="1600" data-original-width="1476" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDEqive4S8IoSayMaFgQ-C5jNucqsdJBrpi1Ke-8H6myGGTgaMXu8hBu2HhSeafCCZ6h6sjiR17fGjrR7tGksmlXHHDL3T8F_hgtygEqT7ABPPW_m4oTZqTVRtgUkF8LC2I6159QL83fs/s400/roar2014.png" width="368" /></span></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">eROAR 2014</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">During the first research project I was part of (eROAR 2014) I didn't realize that our team was doing formal qualitative research. I thought I was just helping out and ended up as a co-author on this paper - <o:p></o:p><span style="color: #525c5a; text-indent: -0.38in;"><a href="https://participatorymedicine.org/journal/evidence/case-studies/2017/08/04/evolving-patient-researcher-collaboration-an-illustrative-case-study-of-a-patient-led-knowledge-translation-event/">Evolving Patient-Researcher Collaboration</a>: </span><span style="text-indent: -0.38in;">A </span><span style="color: #525c5a;">Case Study of a Patient-Led
Knowledge Translation Event</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Another early collaboration was a SPOR funded <a href="http://ossu.ca/training/resources-for-patients/">demonstration project</a>, where our team developed tools for partnering in health research for both patients and researchers based on our experiences as members of health research teams. The tools help each group learn to work with the other. We also </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">included a set of </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">additional tools for evaluation. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So, if you are a patient thinking about getting involved in research you might have a few questions</span><br />
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<li><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Why would researchers want to or feel compelled to engage with patients? </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Are there benefits on both sides?</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">How do interested patients and researchers find one another? </span></li>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">and then think about why the status quo has changed from what was </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">normal practice </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">in the past ie no patients.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">One of the reasons for change would be the policies of the organizations that fund research. Here are quotes from three of them.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="color: blue;">CIHR (Canadian Institutes for Health Research)</span> “<span lang="EN">At CIHR, we want to help transform the role of patient … to a <b>proactive partner</b> who helps shape health research and, as a result, health care”</span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The <span style="color: blue;">SPOR</span> (Strategy for Patient Oriented Research) program at CIHR - " <a href="http://www.cihr-irsc.gc.ca/e/45851.html"><span style="color: #7834bc;">Patients</span></a><span style="color: #333333;"> need to be involved in all aspects of research to ensure questions and results are relevant"</span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="color: blue; font-family: "arial" , "helvetica" , sans-serif; font-size: medium;">IMHA (</span><span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; font-size: medium;">Institute of Musculoskeletal Health and Arthritis)</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="color: #333333;">e<span style="background: white;">ncourages its stakeholders to engage in Knowledge Translation and Patient Engagement which occurs when patients play an active role in defining issues, considering solutions, and identifying resources or priorities for action which can take place at a variety of stages in the research, planning or implementation phases of a project. </span></span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">There are many ways to include patients on research teams, starting with the application where the most obvious is the <i>Patient Engagement</i> section. There are numerous areas for patient influence such as the</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Summary</i> where patients can add relevance from the public point of view<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Knowledge Transfer Plan</i> -- Include marketing for reach and impact<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Team roles</i> – define roles of citizen partners or panel, if chosen<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Patient engagement</i> – add an excerpt of the partnership strategy</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Timelines</i> – it takes time for researchers to develop an engagement plan and recruit patient partners<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Budget </i>– include costs of recruitment, participation and support.<o:p></o:p></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The ideal is to have patients involved through the whole process, from choosing the question to the Terms of Reference, and the protocols, as well as data gathering and analysis.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Of course patients and caregivers are not researchers. In many cases it is our lived experience that gives us expertise and insights that can be useful. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: medium;">There are some courses offered to help patients develop a better understanding of research and for researchers to learn about partnering and team building. Here are some that I know of.</span></span><br />
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Master Class</span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Patients, Researchers, Decision
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Partners in Research</span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">St Mike’s/Li </span><span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Ka</span><span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;"> </span><span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Shing</span><span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;"> & SPOR</span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">CIHR Core Curriculum</span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Patients and Researchers</span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">PaCER</span><span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">-</span><span style="font-family: "calibri"; font-size: 18pt; font-weight: bold; vertical-align: baseline;"> Patient and Community Engagement
Research</span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Alberta Health Services, Cummings
School of Medicine</span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Western University </span><span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">University</span><span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;"> of </span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Waterloo</span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">PORTL-PHC (Patient-Oriented
Research Training & Learning- Primary Health Care)</span></div>
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<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">4 modules </span><br />
<span style="font-family: "calibri"; font-size: 18pt; font-weight: bold;">Available online**</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Some of us have taken the <a href="http://www.pre.ethics.gc.ca/eng/education/tutorial-didacticiel/">TCPS-2 Ethics</a> course or other courses like those above. Of course if we need to do a <a href="http://www.cihr-irsc.gc.ca/e/45641.html">CIHR CCV</a> that may take support. That is a specialized CV meant mainly for researchers which is sometimes required for patients. I found there were many areas that did not apply to me as a patient.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Patients and family members should be full partners and collaborators because they are key stakeholders through paying for the health system, and have a personal and societal interest in improving outcomes. They may also have life experiences or background that can be useful. One night at dinner with other patient researchers we had a speech language pathologist, a molecular biologist, an IBM Watson team member, and a recruiting expert around the table.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"> Slide<span style="text-align: center;"> from Patient Advisors Network (PAN)</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Of course partnering is the essence of engagement. I have sometimes seen that the distinction between patients and subjects can be unclear. Generally I would say that if you wanted me to sign a consent form before I participated I would not consider myself to be a partner, I'd be a subject.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /><span style="background: rgb(254, 254, 254); letter-spacing: 1.2pt;">The strong support for patient inclusion at the funder level and access to information has made a big difference to the numbers of interested patients and caregivers over the past five years. There are many </span><span style="background-color: #fefefe;">enthusiastic patients.</span><span style="background: rgb(254, 254, 254); letter-spacing: 1.2pt;">who are willing to be involved. </span><span style="background: rgb(254, 254, 254);"> </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background: rgb(254, 254, 254);"><br />As an example, for the Health Minister's Patient and Family Advisory Committee (PFAC) in Ontario there were 1200 applications.</span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background: rgb(254, 254, 254);">The CHI Partners conference received 170 applications for about 12 spaces.</span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background: rgb(254, 254, 254);">The Partners in Research course fills up very fast and has wait lists.</span><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background: rgb(254, 254, 254); letter-spacing: 1.2pt;"><br /></span>So, how do researchers find patients and caregivers who want to be research partners? <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />One idea is through a community of practice for patients called The <a href="https://www.patientadvisors.ca/">Patient Advisors Network</a> which is a national Canadian group. Members can share opportunities to get involved on the groupsite, after they join.<o:p></o:p></span></div>
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There is also a provincial Support Unit of SPOR in every province which may give you tips for involvement, and in <span style="background: rgb(254, 254, 254);">BC there is a group of 700 patients and caregivers called Patient Voices Network.</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background: rgb(254, 254, 254);"> </span> <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">You might also find potential collaborators on Twitter, where the clinician, researcher and patient community is quite robust.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And even in lab science where the research might be concentrating on platelets, mouse knees, or HLA antigens there is a place for patients. Having patients involved is an effective way to ensure clear language is used in writing and promoting real evidence-based messages to a non-scientific audience, or to increase the impact of the research results to the people who will ultimately benefit.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />Researchers at ARC (Arthritis Research Canada) collaborated with a patient group, CAPA (the Canadian Arthritis Patient Alliance) to produce the recent #ArthritisParent tweetchat, that showcased recent research on biosimilars and pregnancy.</span><br />
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ARC is also the group that produces ROAR which is a collaboration of patients and researchers presenting arthritis research.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">#eROAR is an annual event done live and by webinar and tweetchat to showcase research done by ARC. You can find the <a href="https://www.arthritisresearch.ca/roar/">2018 videos here</a>.<o:p></o:p></span><br />
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Here's one of my favourite efforts to make science understandable for everyone. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">This international contest has
challenged scientists at every level – from graduate students to senior
researchers – to communicate familiar yet complex concepts in ways that are
understandable to an 11-year-old.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Alan Alda founded the <a href="https://www.aldacenter.org/outreach/flame-challenge">Flame Challenge </a>organization and the prizewinners are fascinating.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">** </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Are you interested in </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">taking the program?</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Contact </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Program Coordinator: Rob Van Hoorn</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">rvanhoo@uwo.ca to sign up.</span><br />
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com2tag:blogger.com,1999:blog-8533911831400192848.post-74836070313181509392019-02-23T21:28:00.000-05:002019-02-25T09:08:43.539-05:002018 Sjogren's Society of Canada National Conference<span style="font-size: large;">Opportunities For Empowerment</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Last year's in-person National Conference took place last April, and here's a retrospective look at it. This year the Conference is on April 27, 2019 in Mississauga, Ontario and you can register <a href="http://bit.ly/2Fy5nEs">here</a>.</span><br />
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<span style="font-size: large;">We had a very full day with informative speakers in every time slot. The day started with an introduction from Dr Lisa Prokopich, the SJSC Vice-President.</span><br />
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<span style="font-size: large;">Our first speaker, Dr Julian Ambrus is Professor of Medicine, SUNY at Buffalo School of Medicine, Division of Allergy, Immunology, and Rheumatology. He gave us an overview of Sjogren's and information on "New Ideas" He pointed out that Sjogren's is a systemic disease defined by dry eyes, dry mouth, decreased tear production and salivary flow, and it can also involve lungs, kidneys, neuropathy, vasculitis and that 5% of those affected may develop non-H</span><span style="font-size: large;">odgkin lymphomas. He told us that the submandibular gland was the first to be affected in Sjogren's, then the parotid gland, finally the sublingual gland which is under your tongue. </span><br />
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<span style="font-size: large; text-align: start;">Dr Julian Ambrus</span></div>
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<span style="font-size: large;">After an overview of current treatments he said early diagnosis is critical, even though current therapies are inadequate. He suggests that patients with Sjogren's be followed carefully by doctors who know what they are doing. We need new therapies to restore function to tear and salivary glands, and to prevent complications and systemic problems.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Here's a partial list of treatments he gave us for the management of Sjogren's Syndrome</span><br />
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<ul>
<li><span style="font-size: large;">Artificial tears and saliva</span></li>
<li><span style="font-size: large;">Sugar free lozenges to stimulate salivary glands</span></li>
<li><span style="font-size: large;">Cholinergic agents that stimulate remaining salivary glands increase secretions such as Pilocarpine in Canada/US, Civemeline in US</span></li>
<li><span style="font-size: large;">Topical cyclosporine eye drops</span></li>
<li><span style="font-size: large;">sometimes topical steroids</span></li>
<li><span style="font-size: large;">Topical 5% lifitegrast opthalmic solution</span></li>
<li><span style="font-size: large;">Punctum plugs to retain tears in the eyes longer</span></li>
<li><span style="font-size: large;">Treatment of any infections</span></li>
</ul>
<span style="font-size: large;">Dr Ambrus and colleagues are involved in research about IL-14, a B Cell growth factor which is increased in patients with Primary and Secondary Sjogren's. We hope this will yield good results in the future.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Our next speaker was Dr Richard Maharaj who is the Clinic Director at eyeLABS Centre for Ocular Surface Disease who told us that living with dry eye disease does not have to be a life sentence and that treatment options have exponentially increased, though there are challenges in diagnosing Sjogren's Syndrome. Eye care providers are critical in the process of diagnosis. He mentioned some in-office treatments such as LipiflowThermal pulsation for Meibomian Glands, IPL (Intense Pulsed Light) treatments for MGD, and eyelid and tear inflammation, Blephex, and amniotic membrane grafts.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">One shocking fact is that 50% of adults with Sjogren's are undiagnosed. We know from past conferences that the time to diagnosis is too long - Dr Maharaj said that patients have symptoms for an average of 3.9 years before they are diagnosed.</span><br />
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<span style="font-size: large;">He also gave us three rules for dry eyes. </span><br />
<span style="font-size: large;">1. Avoid preservatives in eye drops and eye gels</span><br />
<span style="font-size: large;">2. Use a Hyaluronate eye drop eg HYLO, i-drop</span><br />
<span style="font-size: large;">3. Triglycerides - Omega 3's. We need this to be bioavailable.</span><br />
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<span style="font-size: large;">We heard from Dr. Heather Palmer next. She devotes her time to applying what is being learned through science to help all people to maximize their cognitive capacity. Her topic was the much dreaded and often mentioned among patients "Brain Fog". She told us that the three main issues that affect your brain function are pain, fatigue and worry. </span><br />
<span style="font-size: large;">Brain fog can affect your verbal skills, spatial skills and executive function, so it may affect your psychological well-being, functioning and even your relationships. Some important lessons from research that she highlighted are:</span><br />
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<ul>
<li><span style="font-size: large;">Good relationships keep us healthier and happier</span></li>
<li><span style="font-size: large;">Social connections and close proximity are good - loneliness kills</span></li>
<li><span style="font-size: large;">Quality of relationships is what matter, not the numbers</span></li>
<li><span style="font-size: large;">Good relationships protect the body AND the brain</span></li>
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<span style="font-size: large;">We should assume we'll forget and put strategies in place to deal with that; we should schedule things to adapt to our strengths; and we should develop a toolbox of solutions to help us with issues. At the close she told us that we are empowered to change our brain functions, that we should make a conscious effort to use strategies to help us, gave us rules of thumb for 'present-mindedness'</span></div>
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<li><span style="font-size: large;">Stop</span></li>
<li><span style="font-size: large;">Clarify</span></li>
<li><span style="font-size: large;">Simplify</span></li>
<li><span style="font-size: large;">Monitor</span></li>
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<span style="font-size: large;">It was also reassuring to hear that brain fog exists, it is not in our minds, and that symptoms may vary from person to person.</span><br />
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Brainfog</div>
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<span style="font-size: large;">This year for the first time ever we had a Patient Panel. The four members represented different aspects of the involved patient experience.</span></div>
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<span style="font-size: large;">Joyce Hambly, our support group leader in the Kitchener-Waterloo area spoke about the benefits of being able to talk person to person about issues and symptoms with other people who understand. One rule of support groups is "What is shared in the room stays in the room." For new problems the group brainstorms.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Sjogren's Board member Janet Gunderson gave us her insights about being engaged and involved as a patient advisor while living in a remote rural area. Hearing her advice and knowing that she lives in northern Saskatchewan and has a really positive impact through her volunteer work was very inspiring. Even though she is somewhat isolated, she makes a valuable contribution as an engaged patient.</span><br />
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<span style="font-size: large;">Annette McKinnon talked about what she learned as a patient who has been</span><span style="font-size: large;"> involved </span><span style="font-size: large;">with the Sjogren's Society of Canada from the beginning. She stressed the value of patient organizations, especially for diseases that are not well known. Patient groups help with awareness and education, and help people realize they are not alone with their problems. </span><br />
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<span style="font-size: large;">Then Sharon Marafon talked about that vital issue for patient groups - funding and fundraising. It's a real struggle for a small grassroots patient organization to just exist, especially when Sjogren's takes such a toll on our members. She has been an amazingly effective fundraiser and event planner for many groups in the past, and she was one of the masterminds of Sjogren's 'Old Bags Fundraiser' a few years ago. </span><br />
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<span style="font-size: large;">We were also delighted that an anonymous attendee made a generous donation and volunteered to match donations that others made at the conference. We would like to thank our anonymous benefactor.</span><br />
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<span style="font-size: large;">When Dr Arthur Bookman got up to speak he was welcomed as the Chairperson of the Sjogren's Society of Canada Medical Advisory Board. He is also a distinguished rheumatologist and the Coordinator of the Mutidisciplinary Sjogren's Clinic at the University Health Network in Toronto. His talk this year was titled "Sjogren's Disease: Redefining and Repositioning"</span><br />
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<span style="font-size: large;">He began by reviewing the classification criteria for Sjogren's and stressing that these criteria need to be sensitive and specific for an accurate diagnosis. It's interesting to see how the results he sees in the clinic compare to those found in literature.</span><br />
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<span style="font-size: large;">He went on to review the benefits and shortfalls of Rituxumab, which is seen to benefit salivary flow, dry eyes and mouth, fatigue and extra-glandular manifestations. Unfortunately the research results are not a slam-dunk: Maybe the wrong patients are chosen, the wrong targets are selected, or the outcome measures are not appropriate.</span><br />
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<span style="font-size: large;">Dr Leslie Laing, the new President of the Sjogren's Society of Canada, spoke to us about "Controversies in Sjogren's: From Implants to Fluoride" She began by reviewing the benefits of healthy saliva flow. I had not realized the part it plays in ensuring dentures are comfortable.</span><br />
<span style="font-size: large;">Another question she addressed was about the extent to which a history of Sjogrens Disease affects the failure of dental implants. Though there may be some drawbacks in most cases the implants survived and were an aesthetic and functional solution.</span><br />
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<span style="font-size: large;">Some evidence based facts from Dr Laing:</span><br />
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<ul>
<li><span style="font-size: large;">a strong recommendation for the use of a topical fluoride</span></li>
<li><span style="font-size: large;">recommendation for stimulating salivary flow to reduce incidence of caries</span></li>
<li><span style="font-size: large;">moderate evidence for use of a remineralizing agent</span></li>
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<span style="font-size: large;">The day closed with Dr Miriam Grushka, with a talk titled "Why is my tongue sore and why does it hurt and what happened to my taste?"</span></div>
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<span style="font-size: large;">Looking at the dry mouth in Sjogren's the tissues look dry, red, irritated and may have ulcerations. This can lead to opportunistic infections, such as yeast infections which actually changes the architecture of the tongue and can lead to sore, burning tongue, loss of taste, burning mouth, and difficulty eating. </span></div>
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<span style="font-size: large;">In some cases the loss of taste is a sign of loss of tastebuds. </span></div>
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<span style="font-size: large;">For prevention Dr Grushka suggests products like Xylitol containing gums and candies or medication to increase saliva flow. Another idea was a night guard or invisalign-type tray with a remineralizing agent to be worn at night. (Note: I do this and it is helpful)</span></div>
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<span style="font-size: large;">We'd like to thank our round table session hosts. You can learn a lot from experts while they are being peppered with questions from your peers. </span><span style="font-size: large;">I learned that eyes are a significant frustration to most of us and that memory and cognition courses only benefit those who actively make changes. </span><br />
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<span style="font-size: large;">As usual we had a draw for donated prizes. Thanks especially to Wendy Shingler for her hand-crafted jewelry donation.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Of course this could not have been done without our sponsors Allergan and lubricity, and </span><span style="font-size: large;">our exhibitors, Allergan, BioXtra, Candorvision, Oral Science and The Dry Eye Store.</span><br />
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<span style="font-size: large;"><br /></span>Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com1tag:blogger.com,1999:blog-8533911831400192848.post-51475957482369945542018-09-24T21:01:00.000-04:002018-09-24T21:21:31.785-04:00Dealing with Chronic Disease Can Get Old<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">This post is partly crowd-sourced from my online support group that's been together through thick and thin, even losing a few members from complications as we have talked over the years. Speaking for myself, writing this blog and choosing the pictures my old friends shared in the past made me feel decidedly better today.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Here's what they say:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Tricks seem to imply that you are fooling yourself or your body, and I just don't see that as a working strategy. With the brain in charge - it's a losing battle. So, the tips are better then the tricks.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="color: #003300; line-height: 107%;">I think eating ice cream would be appropriate.</span><o:p></o:p></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="line-height: 25.68px;">We look like we are feeding monkeys when we go to the store because we buy so much fresh fruit and vegetables. We have at last one serving of a fruit or vegetable and usually more with every meal.</span></span></div>
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<span lang="EN-US"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Aging –you’re
not old - </span></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I
have read that 65 to 75 is "Young" old, 75 to 85 is
"Old" and 85 plus years is "Very" old.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The above comments are from Dolly's mom.</span></div>
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<span style="line-height: 107%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">We're not rewarding to our doctors. When we start to have rheumatoid disease longer and things start to pile up....there isn't much that can be done. One of the reasons I haven't gone to another rheumy is that 30 plus years with
r/a is a long time. It’s all progressive</span><span style="font-family: "arial" , "helvetica" , sans-serif;">.<b style="font-size: x-large;"><o:p></o:p></b></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I feel invisible a lot of the time. I think you don’t get much attention if you're solo.</span></div>
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<span style="line-height: 107%;"><span style="font-family: "arial" , "helvetica" , sans-serif;">From Henry's foster mom</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Some of us are getting a little tired. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">How many rounds is this fight? </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I
am so tired of fighting for things now. I really feel like just giving in.</span></div>
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From our member in New Jersey</div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Not every patient is interested in their health care. I think more should be available to educate people on the necessity of taking responsibility for their own health. "No one cares more about your health than you do" is what I would tell them.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So on one hand you have the world where the doctor is seen as "God" and all knowing, and on the other, many people who have a variety of expectations of their doctor, including wanting to be part of the treatment process.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Then there is the minority who want to be really involved including having a voice in decisions that affect the health care system, and the policies that govern it. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Even though some see them as "Not the unheard voices" they are still essential to pave the way for more patients and caregivers to take on a larger role. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So I'd like to thank all the people who go above and beyond their expected roles, for doing the sometimes exhilarating and often thankless job of being patient and caregiver advisors.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">To all the ants toiling away in models of collaboration</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This blog is part of RD Blog Week. See more<a href="http://radiabetes.com/blog-week18/day2.html"> here.</a></span></div>
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com2tag:blogger.com,1999:blog-8533911831400192848.post-61216381146952448102018-07-20T11:21:00.001-04:002018-07-20T15:30:36.493-04:00Being a Patient Advisor: One of the Drawbacks<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">t has been an illuminating time recently on social media, hearing</span><span style="background-color: white; color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> patients and caregivers express </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">feelings of frustration, and of being </span><span style="background-color: white; color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">used and vulnerable.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;">It's likely they too h</span>ave been described as "Expert Patients" or "Professional Patients" to their faces, and in referring to people like them. I find the implications of both expressions offensive in their suggestion that I am taking a space where an 'unheard voice' should be sitting.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Just this week in a tweet chat a participant said a _ xy _ _ initiative will have failed if we simply give greater voice to those who already have loud voices, and I doubt he was referring to researchers, professionals, or funders</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I did not choose to become a patient; none of us do. I developed a chronic disease 30 years ago that continues to this day and has seriously damaged my bones and joints. I get involved with issues and causes and try to contribute positively to finding solutions or answers that will effect change because I know many system weaknesses and pressure points first hand.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Now that I have developed more knowledge about the health care system I can deal with it better on my own behalf and can also be involved in efforts to improve the situation for other patients and caregivers.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But as Dawn Richards said in her BMJ patient blog this year, the <a href="http://bit.ly/2F9Tjp9">patient is also a person</a>.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">In my deepest self I am not a patient, but in any interaction with the health system, that's my assigned persona. Being the 'Expert Patient' that I am considered to be does not mean that I have stopped having my own inconvenient personal encounters with health care.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">a) Being knowledgeable does not mean I don't need medical help.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">b) Expending my energy as a volunteer does not mean I am healthy.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">c) Spending hours every week reading and learning enough to be able to follow and contribute to high-level conversations about system issues should not be something used against me.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">d) It is not the job of patient volunteers to make the volunteer pool diverse and inclusive.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">e) Not everyone who would like to volunteer is able to. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It's ironic that those who are least able are often the only <u>volunteers</u> around the table, giving their own time to benefit others.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Another issue is <a href="http://bit.ly/2FbOzQ5">patient engagement</a> as highlighted recently by Isabel Jordan @seastarbattitta. Her story of being profoundly disregarded after working on a project as a team member, and then being ignored can be taken as a lesson in how NOT TO engage patients.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">When I began to be involved as a patient partner, or as a conference invitee I was excited and happy just to be there. After years of experience my sense of tokenistic involvement is a lot sharper. One of my older posts is about the <a href="http://bit.ly/1KxNFXQ">Authentic Patient Voice</a> and how much I wonder what the main agenda items at meetings would be if patients choose them without being 'guided' by well-meaning professionals.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It is disturbing to see patients characterized as being responsible for overcrowded emergency departments, as seekers of pain treatment, as pushing doctors into prescribing unneeded antibiotics and tests, and as non-compliant with medications. It only makes sense to involve all members of the team in creating solutions for health system problems, and that team includes patients, who are actually paying for the whole health edifice as taxpayers and as users of non-covered services.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">When volunteering as a patient advisor I don't like being called an 'expert patient' or 'professional patient'. Gaining experience with the health care system was never my goal. The work involved in being a patient is a real burden.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">If #patientengagement specialists look at me and wish I were an unheard voice, rather than an older white woman who is retired, why don't they work harder at inclusion? They could reach out to communities that include the people they would like to see, and invite them to participate, or at least ask them about methods of participation that would make them comfortable with the process.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">If researchers or organizations feel their </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">initiatives will have failed if they simply give greater voice to those who already have loud voices, what are they going to do about it? </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Blaming the people who are helping you now will not attract people with different viewpoints or backgrounds. As a person who spent 20 years recruiting I know it takes time, energy, and innovative strategies to include people you seldom see represented around the table.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Twitter persons who informed this blog post included: @to_dpr @solidfooting, @PFEAMorin, @amaybee, @couragesings, @seastarbattita. </span><span style="font-size: large;">I am @anetto</span><br />
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com2tag:blogger.com,1999:blog-8533911831400192848.post-28730199610705977222018-07-16T12:14:00.004-04:002018-07-20T13:22:00.684-04:00Getting Involved as a Patient Advisor: The Hackathon Files<span style="font-size: large;">In the middle of October I was a judge and patient advisor at a Hackathon put on by the Arthritis Society at the MaRS Discovery District in Toronto. #ArthritisHack</span><br />
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<span style="font-size: large;">I had never been to a hackathon before, and to be a judge on my first experience was worrying, but one thing I know a lot about is living with arthritis, apps for chronic illness, and patient engagement. That helped me to take the step into the unknown.</span><br />
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<span style="font-size: large;">You might wonder what actually happens at a hackathon and how a patient or caregiver can get involved. I found out it's all about design, like a race to produce a great solution for a problem in the space of a weekend or less. Those involved in doing this include software developers, graphic designers, interface designers, project managers, and in this case rheumatologists and patients who have arthritis as experts on the subject of arthritis. </span><br />
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<span style="font-size: large;">A Hackathon incorporates a user-centered-design process, so the creators start by talking to the intended users of the applications they plan to build.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivIhWxDo1-cbtyh2Zqcj1Tz6oU01kG29dljlM4zDSqIn6MZ58uTtOPgFKm2cW_hi8dnw6XcUL5Ky8V-EuVDFkmQwGZqhDH19_UMXf4iNJ7Ld2u0vs3mz_x6cpxKv8py8fm7aq_heg9_ww/s1600/hackthemes.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1195" data-original-width="1200" height="318" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivIhWxDo1-cbtyh2Zqcj1Tz6oU01kG29dljlM4zDSqIn6MZ58uTtOPgFKm2cW_hi8dnw6XcUL5Ky8V-EuVDFkmQwGZqhDH19_UMXf4iNJ7Ld2u0vs3mz_x6cpxKv8py8fm7aq_heg9_ww/s320/hackthemes.jpg" width="320" /></a></div>
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Hackathon themes</div>
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<span style="font-size: large;">The first night got off to a great start with introductory speeches from the sponsors and #HackingHealthTO. Patient group leader </span><span style="font-size: large;">Dawn Richards </span><span style="font-size: large;">was there from CAPA (Canadian Arthritis Patient Alliance) and spoke about arthritis and the issues involved to put the disease into perspective for the teams and sponsors.</span><br />
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<span style="font-size: medium;">CAPA VP Dawn Richards inspiring the teams</span></div>
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<span style="font-size: large;">Some of those attending as mentors were good friends who I have met through other engagement activities.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPUFVc1-Ngo-CvMsKpoWcf4sVqtcBroz8GzziHKwDTlBIzH-vy1wy5YUK0MOjNbbhZPZi0nzp13TIvVDVkhDF3y0pMw0icf9pNGxBEJfRCZVKGGuNbJIOrEonYkkc6OdGFZdaYDp4KARM/s1600/hacklene.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="773" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPUFVc1-Ngo-CvMsKpoWcf4sVqtcBroz8GzziHKwDTlBIzH-vy1wy5YUK0MOjNbbhZPZi0nzp13TIvVDVkhDF3y0pMw0icf9pNGxBEJfRCZVKGGuNbJIOrEonYkkc6OdGFZdaYDp4KARM/s320/hacklene.jpg" width="206" /></a></div>
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Karen and me above; Lene Andersen of The Seated View blog in lower picture</div>
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<span style="font-size: large;">There were 11 teams there using their skills and creativity to produce the next amazing app. Both patients and doctors gave advice about what was practical, desirable, useful - what would make the app something that could help people.</span></div>
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Mike Stone of Lilly Canada and Dr Rachel Shupak</div>
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Dr Philip Baer with Isabel Vezina of Hacking Health and Michelle Mika </div>
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<span style="font-size: large;">The Arthritis Society held this event with sponsors Eli Lilly Canada and Cossette. The Lilly team produced the food and display below to illustrate some of the problems involved with rheumatoid arthritis. T</span><span style="font-size: large;">he prizes for winners of the competition include c</span><span style="font-size: large;">oaching and marketing help to the winning solutions into shape to compete for people's attention.</span></div>
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Opening jars and lifting cups are other issues with joint damage from RA</div>
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<span style="font-size: large;">It was great to see so many people pitching in to help people living with arthritis. </span></div>
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<span style="text-align: left;">Here's everyone involved in the Hackathon - the big team</span></div>
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And here's a picture of the winning team- Team Kizuna</div>
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<span style="font-size: large;">The winner was an app that is all about community. You'll have to wait for the future to see it in action. Keep watching The Arthritis Society <a href="https://www.arthritis.ca/">website</a>.</span></div>
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Janet Yale of The Arthritis Society</div>
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<span style="font-size: large;">And </span><span style="font-size: large;">Janet Yale, the CEO of The Arthritis Society, gave us </span><span style="font-size: large;">a final goodbye with thanks for all of the great ideas and great results.</span><br />
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<span style="font-size: medium;">This post also appeared in the <a href="http://www.arthritispatient.ca/news/december-2017/">Canadian Arthritis Patient Alliance Newsletter</a> December, 2017</span></div>
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com4tag:blogger.com,1999:blog-8533911831400192848.post-86871599606851265972016-09-29T01:11:00.003-04:002016-09-29T01:28:14.704-04:00"I Had a Nightmare Dream"<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Here's a conversation about pain between two good friends who gave me permission to use their words, and whose names are changed.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">"I had a nightmare type dream where I was in a car with others and I lost control on a curve. I regained control quite quickly and no one was hurt. Now that's quite a telling dream, huh?"</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">That's what one of my support group friends reported when she woke up in the morning with her feet and lower legs hurting like the dickens - she said they were "on fire". So she took her pain med and looked forward to feeling better because she had a busy day planned...</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">With a forecast for strong thunderstorms, a high of 90 and very high humidity she blamed some of it on the weather. She said "I wish my doc would let me take more medication on the bad days but he is worried about the changes in the brain that opioids make."</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">"Oh well...when I hurt enough I guess I will complain louder."</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Gail replied "I do wish the doctor would listen to what you’re saying about the pain Robin. I’d say, what about what the constant pain does to the brain and how you feel in yourself?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Gail went on to comment that she had one of those days yesterday where the pain meds just didn’t cut it; by the afternoon she felt awful, stiff and painful and the fatigue hit super hard. I held off but relented with extra pain meds by <span class="aBn" data-term="goog_899434775" tabindex="0"><span class="aQJ">6pm</span></span> and my evening was much better. Does anyone else have days like that where you’re literally counting the minutes to the next pain med dose?" </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Robin told us "Out of the 24 hours I get relief for approximately 8 if you consider how long it takes for the med to reach all the brain sensors for pain and then the time it begins to start back to "normal". I was counting the hours yesterday to when I could take the second. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Exactly Robin, replied Gail. Which pain med are you on? I’m on Di-hydrocodeine and that takes 50-60 minutes to metabolize in the liver. I then get between 4-6 hours before they wear off. I do know what you mean too about how fascinating it is, the way one day your elbow for example can be in absolute agony and then next day, nothing! Sometimes hour to hour is like that, it’s a crazy disease for sure</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I am on hydromorphone 2mgs. I feel better today. So I was able to sleep from 7-9 but it wasn't refreshing sleep. I'm not sure I will ever have that again. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I know my friends use a variety of methods to stay mobile, to distract themselves from the pain socializing and doing creative activities and yet this is not always enough. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Another member of our group takes a very low dose pill usually only once a day, and yet despite the fact that she is stable and also almost 80 she is forced to make an extra visit to the doctor every month to get a new prescription. he feels he is doing her a favour because she is his only patient on any opiod at all and if he did not do this she would be forced to go to a pain clinic.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Things are getting very difficult for patients with chronic pain who just want to be able to function for at least part of the day. Every drug we take has an inherent risk of course. If I could not take Nsaids I don't know what I would use as an alternative, and yet Nsaids commonly cause cardiovascular and stomach problems, especially as you age. The alternative medications for pain are all risky and we are being warned about almost every painkiller.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It seems that patients are more and more expected to find their own remedies and many of us are very skilled in using every strategy we find already. Where do we go from here?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I actually saw an article where orthopedic surgeons were discussing cutting back on strong painkillers. I will admit I could do with less than a week's worth usually, but don't even try t talk to me about mindfullness two days after one of my joints has been fused or reconstructed.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">This post is part of RA Blog Week. More blogs on this topic can be found <a href="http://radiabetes.com/blog_week16/day4.html">here</a>.</span><br />
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com1tag:blogger.com,1999:blog-8533911831400192848.post-52659883501093688092016-09-27T22:47:00.001-04:002016-09-27T23:09:46.795-04:00A Dfferent Route To a New Treatment<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxXT-SdVPeyDv9kNy1YGyxPrvoVzTgJCiZOhXao6ynAYrrhbzvjfFvCScWcfKfz6Dx2WIpmfp3FXyfsDA9wjABADJVl2wpN4n7uh0SMTF43V8p6CaSfL5_l33jLtg02ALTiEP3rMvGhYQ/s1600/RABlogWeekBanner.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="39" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxXT-SdVPeyDv9kNy1YGyxPrvoVzTgJCiZOhXao6ynAYrrhbzvjfFvCScWcfKfz6Dx2WIpmfp3FXyfsDA9wjABADJVl2wpN4n7uh0SMTF43V8p6CaSfL5_l33jLtg02ALTiEP3rMvGhYQ/s320/RABlogWeekBanner.png" width="320" /></a></div>
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<span style="font-size: large;">My road to a biologic drug was different than most I think. Building on my experience as an active patient who often searched for information online, I found an educational resource for doctors online years ago. They are also called CMEs which stands for Continuing Medical Education and have changed in format now.</span><br />
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<span style="font-size: large;">Though they are meant for doctors, anyone could participate and the format was great. After every few pages there was a quiz, so I could check that I was absorbing the information.</span><br />
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<span style="font-size: large;">That was the way </span><span style="font-family: "times new roman" , serif; font-size: large;">I learned about the results of the <a href="http://bit.ly/2dql7Y9">Premier Trial</a> and others that were similar. T</span><span style="font-family: "times new roman" , serif; font-size: large;">he conclusions that stuck with me, were those that said anti-TNF drugs improved disease activity and physical function. What appealed to me most was that biologic drugs were said to give an increased <a href="http://bit.ly/2cJF2Dm">sense of well-being</a>, better physical function, and to decrease erosions and joint damage. I had already seen what joint damage could do and knew I wanted as little as possible. </span><br />
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<span style="font-family: "times new roman" , serif; font-size: large;">After reading these conclusions it seemed to me that my life could be better with more aggressive treatment. With physical symptoms of fatigue and inability to expend energy my life was limited. After working all day I had no energy left for any other aspects of life and I spent my weekends resting and visiting sick relatives. I felt like a doll lying in a room in a dollhouse when there were no kids at home.</span><br />
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<span style="font-family: "times new roman" , serif; font-size: large;">Well-being is not something that my doctor ever asked about in his surveys that included the</span><span style="font-family: "times new roman" , serif; font-size: large;"> </span><span style="font-size: large;"><a href="http://bit.ly/2dqlYs0">Rapid 5</a> ( a quick way for doctors to judge disease activity)</span><span style="font-family: "times new roman" , serif; font-size: large;"> </span><span style="font-family: "times new roman" , serif; font-size: large;">and HRQL (<a href="http://bit.ly/2cAefG2">Health Related Quality of Life</a>) measurements. Fatigue was not part of them.</span><br />
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<span style="font-family: "times new roman" , serif; font-size: large;">Now we see Patient Related Outcomes (the results patients think are important) becoming far more important in treatment decisions and clinical trials for chronic diseases like rheumatoid arthritis. This change is recent and similar to 'treat to target' which is another phrase you may have seen online, far more than in doctor's offices.</span><br />
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<span style="font-family: "times new roman" , serif; font-size: large;">I was convinced, but n</span><span style="font-family: "times new roman" , serif; font-size: large;">ext I had to convince my doctor to take another look at my health. In my experience if you show up looking presentable and a bit perky at the Dr's office they think you are doing fine. Getting that re-assessment is difficult if you seem to be coping adequately. As my first GP (who missed my diagnosis) used to day "If it's not broke, don't fix it."</span><br />
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<span style="font-family: "times new roman" , serif; font-size: large;">It took a few appointments to do this, which in RA terms translates to more than a year. I had to "fail" on another DMARD so that the insurance company would be satisfied. If the new DMARD had worked it would have been great but it didn't. </span><br />
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<span style="font-family: "times new roman" , serif; font-size: large;">Now I am on a biologic. With it I have more tolerance for exercise and I can do more in a normal day. It did give me a better sense of well-being so I am happier and I think I am healthier too.</span><br />
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<span style="font-family: "times new roman" , serif; font-size: large;">For an interesting read have a look at this paper that discusses the qualitative or narrative responses that show the <a href="http://bit.ly/2d8pCY2">outlook of patients</a> - that is the </span><span style="font-family: "times new roman" , serif; font-size: large;">experiences, attitudes and expectations of people like us about the information they receive before they start anti-TNF therapy</span><br />
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<span style="font-family: "times new roman" , serif; font-size: large;">I really liked the paper - it sounded like me</span><br />
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<span style="font-family: "times new roman" , serif; font-size: large;">This post is part of RA Blog Week. For more on this topic click <a href="http://bit.ly/2de8Wik">here</a></span></div>
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com2tag:blogger.com,1999:blog-8533911831400192848.post-1924588791578478682016-09-26T23:21:00.003-04:002016-10-22T22:52:21.346-04:00Same Song, Second Verse - An Active vs Reactive Patient<div class="MsoNormal" style="line-height: normal; margin-bottom: 0cm; vertical-align: baseline;">
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<span style="font-family: "times new roman"; font-size: large;">At first when I was diagnosed with rheumatoid arthritis I knew nothing about it beyond what I heard from my (busy) doctor and what I read in a Chatelaine magazine article one year.</span><br />
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<span style="font-size: large;">Learning how to find reliable information about my own health was complicated by having to google many of the terms I found. At first I thought that I might have a lot of the complications I read about - that was the way I learned what the doctors call "watchful waiting". After a few months with no changes it became obvious what I did not have to worry about. </span><br />
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<span style="font-family: "times new roman"; font-size: large;">This access to the internet has meant we can all find information of any kind, from basic up to scholar or specialist level. This easy availability of information has leveled the field and is changing our traditional ideas of authority. </span><span style="font-family: "times new roman"; font-size: large;"> </span><br />
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<span style="font-family: "times new roman"; font-size: large;">Doctors are no longer the only source of facts and ideas about health. Now more patients than ever are comfortable asking informed questions at their appointments, where previously they might have been outside the exam room door before they had a chance to ask their doctor important questions.</span></div>
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<span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: 13.5pt;">The revolving door of healthcare</span></div>
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<span lang="EN-CA" style="font-family: "times new roman"; font-size: large;">The individual empowerment that results from knowledge has changed my life in a good way. At the onset, when I was diagnosed I did not do much to help myself for and this lasted about 15 years. I was depressed and anxious and found it hard to deal with the life changes I was forced to accept.<o:p></o:p></span></div>
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<span style="font-size: medium;"><span lang="EN-CA" style="font-family: "times new roman"; font-size: large;">It was encouragement from a physiotherapist and a doctor that started me off on a more active track and now I blog and am active on Twitter. All of those years of experience</span></span><span style="font-family: "times new roman"; font-size: large;"> </span><span style="font-family: "times new roman"; font-size: large;">living with RA had left me with valuable information ab</span><span lang="EN-CA" style="font-family: "times new roman"; font-size: 13.5pt;"><span style="font-size: large;">out how to deal with issues like finding a good team, the benefits of social support, orthotics, physiotherapy…it’s a long list. I wanted to share what I knew so I started to blog about chronic disease. But you can’t just blog – you need readers so I started to tweet links to research studies about Rheumatoid Arthritis (RA) that I thought were important.</span></span></div>
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<span lang="EN-CA" style="font-family: "times new roman"; font-size: 13.5pt;"><span style="font-size: large;">As I met more people online I started to see opportunities to attend conferences and webinars and I realized that my opinions – that the opinions of patients - have a lot of value in healthcare. Knowing this made me feel empowered and engaged. Attending </span></span><span style="font-family: "times new roman"; font-size: large;">Medicine X was a huge boost because I found I was not an oddball, just a certain type of a health nerd. </span><br />
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<span style="font-family: "times new roman"; font-size: large;">Now</span><span style="font-family: "times new roman"; font-size: large;"> I am on the boards of some patient groups and a member of a variety of committees, from the Community Advisory Committee of my local hospital, to government bodies and also research teams. Even though I loved my previous job, this is even more rewarding.</span></div>
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<span lang="EN-CA" style="font-family: "times new roman"; font-size: large;">Being involved with working for changes in the health care system has turned into a real and meaningful passion. It is great to have the tools to make a difference and to </span><span lang="EN-CA" style="font-family: "times new roman"; font-size: 13.5pt;"><span style="font-size: large;">encourage others to get involved.</span></span><br />
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<span lang="EN-CA" style="font-family: "times new roman"; font-size: large;">I loved this acronym I found about learning. </span><span style="font-family: "times new roman"; font-size: large;"><b>SML</b> stands for “self-managed learning”</span><span style="font-family: "times new roman"; font-size: large;">– you can choose your preferred way to learn from a variety of resources like video, webinars, articles and scientific papers. We can all choose to learn at our own speed and level, and patients who learn more often do better in the long term in many ways. </span><br />
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<span style="font-family: "times new roman"; font-size: large;">One that is important is social support. Patient experts and patient groups are good sources of knowledge.</span><br />
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<span style="font-family: "times new roman"; font-size: large;">Patient Support Group</span></div>
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<span style="font-family: "times new roman"; font-size: large;">This blog is part of RA Week. To see more blogs on this topic click <a href="http://radiabetes.com/blog_week16/day2.html">here</a></span>
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com6tag:blogger.com,1999:blog-8533911831400192848.post-65862910128631310002016-09-19T02:43:00.000-04:002016-09-27T22:47:19.688-04:00Seems Like An Old Story Now<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "times new roman"; font-size: large;">By now I have had arthritis for more than half of my life, so it's hard to even remember feeling normal and healthy.</span><br />
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<span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: large; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-CA;">I have rheumatoid arthritis (RA). It’s an autoimmune disease that does not affect any of my relatives, including my 50 first cousins.</span><br />
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<span style="font-family: "times new roman";"><span style="font-size: large;">When my kids were pre-teens I started to have pain and swelling in my wrists, fingers and feet. I was suddenly so tired after work that I would just lie down and feel unable to get up again, even for dinner. </span></span><br />
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<span style="font-family: "times new roman";"><span style="font-size: large;">I was losing weight too but I thought that was because I switched from Pepsi to Diet Coke. </span></span><br />
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<span style="font-family: "times new roman";"><span style="font-size: large;">My GP doctor seemed to think the symptoms were all in my head. When I said I was extremely tired he said "You're a busy active Mom</span><span style="font-size: 18px;">."</span></span><span style="font-family: "times new roman"; font-size: 13.5pt;"> </span><span style="font-family: "times new roman";"><span style="font-size: large;">When I told him about my foot pain he said it was because I was on my feet a lot. And when I had an oval cyst on the back of my hand he said they used to call them Bible Thumpers, because if you whacked them with the Family Bible they would go away.</span></span></div>
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<span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: 13.5pt;"><span style="font-size: large;">My doctor made me feel that I was exaggerating and incompetent and I felt powerless to change the situation. When I left his office I would feel I should try harder but that brief dismissal did not help me at all. I knew there was a problem - sometimes I actually could not stand up first thing in the morning and had to crawl into the bathroom. </span></span><br />
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<span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: 13.5pt;"><span style="font-size: large;">The last time I saw him he told me to take 12 aspirin a day and come back in 3 months. That did not work at all and I still have ringing in my ears caused by all those aspirin.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span><br />
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<span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: 13.5pt;"><span style="font-size: medium;">Walking Gallery Jacket by Regina Holliday reflects this era</span></span></div>
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<span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: 13.5pt;"><span style="font-size: large;">The only way I could think of to deal with the problem was to change doctors. Sadly the 2nd Dr. was no help either. The 3<sup>rd</sup> was actually a foot surgeon who got the right answer less than 5 minutes after I saw him in his clinic.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: 13.5pt;"><span style="font-size: large;">During that 2 years it took to be diagnosed I developed permanent joint damage in my hands and feet (also jaw and neck as I found out many years later). One seemingly trivial result was that to this day I wear ugly shoes because it’s better than limping. I have had 10 surgeries to maintain my functional abilities but have a weak grip, can’t garden or vacuum and hate to stand a lot even at parties.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: large; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-CA;">I have taken immune suppressant drugs and NSAIDS for the past 30 years and managed to work up until I retired, though I did need to change my job for one that had less physical stress.<o:p></o:p></span></div>
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<span style="font-size: small;"><span style="font-size: medium;"><span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: large; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-CA;">That happened in the 80’s so even when I had a name for my health problem all I knew was what I learned from my doctor. This was before home computers were common</span><span lang="EN-CA" style="color: red; font-family: "times new roman"; font-size: 13.5pt;"><span style="color: red;"> </span></span></span><span lang="EN-CA" style="font-family: "times new roman"; font-size: 13.5pt;"><span style="font-size: large;">and with a job and 2 kids I did not have the time or energy to do all I needed to do,<span style="color: red;"> </span></span><span style="color: black;"><span style="font-size: large;">let alone go to the library to learn more.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></span></span></div>
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<span lang="EN-CA" style="color: black; font-family: "times new roman"; font-size: large; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-CA;">Things are different now. Last week googled my original symptoms “pain in hands and feet, fatigue, swollen joints" and found a million results in total with 7 out of the top 10 links mentioning RA.<o:p></o:p></span></div>
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<span lang="EN-CA" style="font-family: "times new roman"; font-size: large; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-CA;">Imagine if I had access to that in the 1980s – I might<span style="color: red;"> </span>have known very quickly what was wrong and insisted on seeing a specialist. With knowledge we have power, and it is great to see more and more patients becoming very knowledgeable about their own health.<o:p></o:p></span><br />
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<span lang="EN-CA" style="font-family: "times new roman"; font-size: large; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-CA;">... to be continued in the next post... Active vs Reactive Patients</span><br />
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<span lang="EN-CA" style="font-family: "times new roman"; font-size: large; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-CA;">This post is part of RA Blog Week at the end of Arthritis Awareness Month. </span><span style="font-family: "times new roman"; font-size: large;">To see more blogs on this topic click </span><a href="http://radiabetes.com/blog_week16/day1.html" style="font-family: "times new roman"; font-size: x-large;">here</a><br />
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com8tag:blogger.com,1999:blog-8533911831400192848.post-72221463817087972332016-08-01T13:39:00.000-04:002019-06-12T23:48:02.831-04:00Using Orthotics in Rheumatoid Arthritis<a href="data:image/jpeg;base64,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" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="font-size: large;">In case you wonder what orthotics or orthoses are, here's a picture of the side view of one of my insoles beside a foot (not mine). With the side view you can see the layers that provide the support and cushioning.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4ydZxE9kzDuL57thGU9zFMa-WvUIQO7VSYxCnYjmx2WRobA4_oARHvQBzhNU3KHuiysRl2oYqyTReFUIN8q9naaiRR7rqgc2t7QHYhrCIxjXwZWy8Vry0dAKkeJV_CaUiXZn99UwYtSw/s1600/orthoticFoot.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4ydZxE9kzDuL57thGU9zFMa-WvUIQO7VSYxCnYjmx2WRobA4_oARHvQBzhNU3KHuiysRl2oYqyTReFUIN8q9naaiRR7rqgc2t7QHYhrCIxjXwZWy8Vry0dAKkeJV_CaUiXZn99UwYtSw/s1600/orthoticFoot.jpg" /></a></div>
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<span style="font-size: large;">Using insoles that are custom made for my feet has meant less pain, and keeps me from limping most of the time.</span><br />
<span style="font-size: large;"><br /></span></div>
<span style="font-size: large;">This we</span><span style="font-size: large;">ek </span><span style="font-size: large;">I read an abstract </span><span style="font-size: large;">about a clinical trial done in the UK. It was called "</span><a href="http://www.ncbi.nlm.nih.gov/pubmed/27466000" style="font-size: x-large;">Clinical effectiveness and cost-effectiveness of foot orthoses for people with established rheumatoid arthritis: an exploratory clinical trial</a><span style="font-size: large;">". Though I looked for the full paper I could not gain access to it prior to writing this. I have since read the full paper. It makes my conclusions less clear cut.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The conclusion of this trial is that even though "semi-rigid customized foot orthoses can improve pain and disability scores in comparison to simple insoles" that providing them is not worth the money on a Quality Adjusted Life Year (QALY) basis. </span><br />
<span style="font-size: large;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1XjxROk9kS3KKZN5jf-ghllLfyft3W4Ib9VrRT1ugyz3lQGhPI2RWFBYSzoo0ywqiasLiSmPvvkcwrqiX3Y60PpAqD6IvTSGeSBz67jHj8uTtlUpgiO1jssVTj_Qvq_lV5Rx3WLHBbo4/s1600/moneyFake.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1XjxROk9kS3KKZN5jf-ghllLfyft3W4Ib9VrRT1ugyz3lQGhPI2RWFBYSzoo0ywqiasLiSmPvvkcwrqiX3Y60PpAqD6IvTSGeSBz67jHj8uTtlUpgiO1jssVTj_Qvq_lV5Rx3WLHBbo4/s1600/moneyFake.jpg" /></a></div>
<div style="text-align: center;">
<span style="font-size: medium;">Fake money for false savings (IMO)</span></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">They conclude this despite the fact that people with rheumatoid arthritis (RA) have</span> <span style="font-size: large;">"greater difficulty with activities of daily living, increased fear of falling and greater self-reported foot impairment." </span><span style="font-size: medium;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/26762210">1</a></span><br />
<br />
<span style="font-size: large;">The pain and disability experienced by people with rheumatoid arthritis who have involvement of their <a href="http://bit.ly/2aqv6h0">weight bearing joints</a> will frequently lead to damage to the ankles, knees or hips due to poor gait mechanics. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">It is estimated that one in three adults with RA will fall once or more times per year (Stanmore et al, 2013) with younger adults falling as often as older adults. Additionally 68% of people in the UK who have RA are reported to be physically inactive. In fact I have wondered for years why anyone thinks that a "Walk" is a good way to raise funds for RA.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">People who have pain and disability when they walk are less able to remain in the workforce, accomplish normal chores and errands and often experience social isolation.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">As a person who has been using customized orthotic insoles for over 32 years I would like to say that my experience of these insoles includes 1,664 weeks of use which is 350% more hours than the whole clinical trial in total which included 41 (only 29 completed the study) people for a term of 16 weeks. (464 actual person weeks of usage). </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I realize that the experience of one person is not research - it is qualitative and experiential, and yet the sheer length of time people with RA must live with this pain and disability should not be so easily disregarded. My 1664 weeks provides a perspective on the length of the trial.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Through the use of custom made orthotic insoles I have been able to delay most of the surgeries I have needed for up to twenty years. I would maintain that a 16 week trial is far too short to come to conclusions about long term efficacy, and that this trial has limited exposure to experiential evidence, based on the short duration and small sample size.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Increased surgery and the future need for custom-made footwear might quickly erode the short term savings that would seem to benefit the healthcare system, while leaving patients with more pain and increased disability.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">There is no sign that patients were involved in this trial in any way beyond being subjects. I would like to see some patient involvement in the outcomes that are to be measured in future research.</span><br />
<br />
<br />Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com5tag:blogger.com,1999:blog-8533911831400192848.post-49879322719440419922016-07-31T14:23:00.004-04:002016-10-03T00:03:30.624-04:00Help With RA Treatment Decisions: ANSWER-2 or a Decision Aid<span style="font-size: large;">My friend </span><span style="font-size: large;">commented </span><span style="font-size: large;">last week that in 30 years with RA she had never seen the new and far more helpful type of pamphlet or booklet called a Decision Aid. My experience was the same as hers - the only time I ever saw a decision aid was during training to be a Peer Mentor, so that I could be an advisor to people who were newly diagnosed. Decision Aids are are much more useful than an informational pamphlet.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Now imagine how useful it would be to have an interactive decision aid. That's ANSWER-2, a new tool to help patients make decisions about starting a new drug or staying on their current treatment if their doctor has recommended a biologic drug. Right now it is at the prototype stage and it is being tested against a decision aid. The researchers and patients who created it are conducting a randomized controlled trial. If you join you will be testing either ANSWER-2 or the paper based decision aid.</span><br />
<br />
<span style="font-size: large;"><u>Background</u></span><br />
<span style="font-size: large;">When I was finally diagnosed with RA it was almost two years after I first developed symptoms. At that time I assumed that getting good treatment from a specialist would make me better. I was wrong then, though the treatment did help. The good news is that better results are more likely to happen now than in the 1980's</span><br />
<span style="font-size: large;">I was so sick at that time that I believe I would have taken any medical treatment suggested by a doctor to get my life back to what it had been like. </span><span style="font-size: large;">I knew next to nothing about rheumatoid arthritis itself, let alone the possibilities for treatment so I did exactly what my rheumatologist suggested.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><u>Things are different now</u></span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Before the internet was available to us all, information was scattered and hard to put together. The facts I knew did not form part of a big picture. My doctor would talk about possible new treatments but my part in the decision always slowed down the process by months because I had to find and learn what I needed to know.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggGhnGC6eFuSDJOmbFfU5adTu4_OqKKgi4ZhycWB_eFxn42aa4eydz-lJWCHWnTKOfSz-V-qJ1dBuuJIBfiR5OC0dmxhS6zaEHrNcXUy1jbhGQI3VGNISWA48NDkCqOlCj5k8ZsKlFCfE/s1600/puzzlepieces.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggGhnGC6eFuSDJOmbFfU5adTu4_OqKKgi4ZhycWB_eFxn42aa4eydz-lJWCHWnTKOfSz-V-qJ1dBuuJIBfiR5OC0dmxhS6zaEHrNcXUy1jbhGQI3VGNISWA48NDkCqOlCj5k8ZsKlFCfE/s200/puzzlepieces.jpeg" width="150" /></a></div>
<div style="text-align: center;">
<span style="font-size: medium;">It was a puzzle, not a big picture.</span></div>
<div style="text-align: center;">
<span style="font-size: medium;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">When I heard of a way that would help me to make important decisions I was really excited by the idea. Now that a Decision Aid can be an online interactive tool it can be a whole new ball game!</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Here's what happened: </span><br />
<span style="font-size: large;">I had reached the point where my doctor suggested it was time to think about a change in the</span><span style="font-size: large;"> drug I was taking for rheumatoid arthritis. </span><span style="font-size: large;">After 30+ years with RA and 8 years on my previous drug, it no longer seemed to be working. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">That made me a candidate to try ANSWER-2 so</span><span style="font-size: large;"> I volunteered. </span><span style="font-size: large;">It was developed by Arthritis Research Canada (ARC) as a research project funded by the Canadian Institute for Health Research (CIHR), and is based on scientific evidence, not information from manufacturers.</span><br />
<br /></div>
<div style="text-align: left;">
<span style="font-size: large;">That background helped because with government funding I knew that the intention of the tool was not to promote a particular drug. It was also reassuring to me that patients were involved in the development of ANSWER-2 and participated on the research team. </span></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">The program started by asking me about my priorities and what I thought was most important. It helped me to balance the convenience vs my anxiety about a change vs worries over starting a new drug. This was exactly what I remembered going through the first time in other decisions about new drugs.</span></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">So with those personal preferences entered, the next area dealt with the potential treatments - On to the decision area! When I saw the possible choices I found that they were ranked in a way that made perfect sense to me.</span><br />
<span style="font-size: large;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimRrW0xF5XLHQRxtTzuXTOcV-v-2MHpoXn0_wjkcQ9lPERYD3xoQrdGy9SfDCy96glDf1emhhpXGcgc9jzgOZ9KbBCBaURmtXywmh_XKL92THCQIjsy49Jjz76K3p0Bj5tTMdJQ8BkVKk/s1600/ANSWER-2_Image.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="353" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimRrW0xF5XLHQRxtTzuXTOcV-v-2MHpoXn0_wjkcQ9lPERYD3xoQrdGy9SfDCy96glDf1emhhpXGcgc9jzgOZ9KbBCBaURmtXywmh_XKL92THCQIjsy49Jjz76K3p0Bj5tTMdJQ8BkVKk/s640/ANSWER-2_Image.png" width="640" /></a></div>
<div style="text-align: center;">
<span style="font-size: medium;">This is what the first page of ANSWER-2 looks like. Sorry it's little small.</span></div>
</div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">Another benefit in using it was a description of the drugs and the comparison of the risks and benefits of each one laid out right in front of me in columns. That really helped me with my choice.</span></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">As I went through the screens I could also watch stories from real patients as a part of the program (I even knew one of them).</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Since this is a prototype more people are needed to test it. At this moment the trial is only available in Canada and the US. Participating in the trial will help the investigators learn whether ANSWER-2 or a standard decision aid is more empowering to patients.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">To try this out it you must have rheumatoid arthritis and be considering a decision about biologic therapy - whether to start t or to change to another drug. If you are eligible you will randomly be assigned to either the online ANSWER-2 or else a Medication Guide in a pdf version. If you test the pdf you will have access to the online version at the end of the trial.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Click this<a href="http://arthritis.rehab.med.ubc.ca/2016/01/14/super-supporting-patient-care-with-electronic-resource/"> link</a> to apply if you are in Canada. The heading on the page is "</span><span style="font-size: large;">SuPER: Supporting Patient care with Electronic Resource"</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">OR</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">For US users please contact </span><span style="font-size: large;">Sharan Rai at SRAI1@mgh.harvard.edu to enroll in the trial.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">For US and Canada: </span><br />
<br />
<br />
<span style="color: #1f4e79; font-family: "tahoma" , sans-serif;"><span style="font-size: large;">To learn more, please contact Jasmina Geldman at
<a href="mailto:jgeldman@arthritisresearch.ca">jgeldman@arthritisresearch.ca</a> or 1-877-871-4575. She can answer all of your questions.</span></span><br />
<span style="font-size: large;"><span style="font-size: medium;"><br /></span>
<span style="font-size: medium;"></span></span></div>
<br />
<br />Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com5tag:blogger.com,1999:blog-8533911831400192848.post-6856143120244844182016-06-08T23:45:00.000-04:002019-06-12T23:43:46.499-04:00Focus Group Ground Rules:Should They Apply When You Consult Patients?<br />
<span style="font-size: large;">When you are asked questions before you start a survey, or before you are invited to a focus group for market research you might notice that you are almost always asked a few questions before you can start the survey or be invited to a focus group.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Imagine the topic is banking. You'd be asked:</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Do you or does anyone in your family work now or in the past in market research, advertising or media?</span><br />
<span style="font-size: large;">Do you now or did you ever work for a financial services provider?</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">If you said yes to either you would not be invited.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">These are the basic questions and they're designed for two things. Sometime to keep the client's competition from learning about the client's plans or to ensure that the other focus group participants are comfortable voicing their opinions.</span><br />
<span style="font-size: large;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH6NUC6k8UGpb5avXbVKn-20hst1_H9RwDLQpOYgm2TvzvMBBPrYG9IY1zAVt5iqvSRqjXy46KpwY2mNik6JDCz9A3ZwyzxxksZGndwSwi_FCAAhRfBohx2oBnoF_FXMlSQd0SOloZ-uc/s1600/focusgrouplego.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH6NUC6k8UGpb5avXbVKn-20hst1_H9RwDLQpOYgm2TvzvMBBPrYG9IY1zAVt5iqvSRqjXy46KpwY2mNik6JDCz9A3ZwyzxxksZGndwSwi_FCAAhRfBohx2oBnoF_FXMlSQd0SOloZ-uc/s1600/focusgrouplego.jpg" /></a></div>
<div style="text-align: center;">
<span style="font-size: medium;">Focus Group</span></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">In the 20 years I spent organizing focus groups this never changed. We often asked our clients for clarification, or a bit of stretching the boundaries to make our job easier but this was never an area where there was flexibility.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">When we asked for exceptions the answer we got was this:</span><br />
<span style="font-size: large;">As we go around the table and give each person a chance to speak and give their opinion, the dynamics of the discussion change dramatically after someone who is considered an expert gives an opinion on the topic of the group</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">No one wants to be at odds with the person who is seen to know more than the others because of experience. The person who 'knows the topic' has an overweight influence on the discussion whether they mean to or not.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I heard this point of view from another perspective at the HCSMCA Unconference in Vancouver. In a conversation with Dr. Paul Dempsey he talked about setting up a Moms group on his website so parents could support one another. He found that a lot of the wisdom of 'Dr. Mom' flowed among the participants - until he stepped in. The conversation stopped when he (the expert) started to take part.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">This can make a difference when organizations, government or organized groups try to hear from patients. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Everyone's opinions are valid, but I would suggest that when there is a broad range of experience among patients, especially when some of the patients are or were health care professionals or health care workers, that holding separate focus groups would produce a better range of opinions and include more voices.</span>Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com4tag:blogger.com,1999:blog-8533911831400192848.post-45818242621348275942016-04-24T19:52:00.001-04:002016-04-25T20:58:09.813-04:00Patient Groups - Hard Work and Lots of Questions<div class="gmail_default" style="font-size: large;">
<div style="font-size: large; margin: 0cm;">
Last week
I attended the CADTH symposium in Ottawa as a member of the Sjogren's Society of Canada.<br />
<br />
You might wonder exactly what CADTH is and why I would want to attend. The Canadian Agency for Drugs and Technologies in Health (CADTH) is an independent, not-for-profit organization that provides public healthcare decision-makers with evidence about the appropriate use of drugs and medical
devices. Patient input is used in deliberations and decisions.<br />
<br /></div>
<div style="font-size: large; margin: 0cm;">
It is
becoming much more important in health care to have the patient, caregiver and
public point of view and we see organizations making changes because of this. Sarah Berglas of CADTH pointed out
that 5 yrs ago they asked clinical experts what was important to
patients. Now they are asking patients for this information.<br />
<br />
To make it easier for patient groups to take part CADTH provides <o:p></o:p><a href="http://bit.ly/1SDkzNz">templates and sample submissions</a> on their website to help them.<br />
<br />
One of CADTH's aims is meaningful involvement of patients and patient groups in the drug review process.<br />
<br />
<div style="margin: 0cm;">
<o:p></o:p></div>
<div style="margin: 0cm;">
</div>
</div>
<div style="font-size: large; margin: 0cm;">
I heard two important comments about patient submissions:<br />
<br />
<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
"Patient
experience brings the disease to life" -- Fiona Miller<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
“The
review team has often never met a patient with the disease” -- Frank Gavin<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
At one of the panels at CADTH, Zal Press of Patient Commando suggested that out of 1682 patient groups, only about 18 have the capacity
to make submissions to CADTH to be considered by the Common Drug Review.</div>
<div style="font-size: large; margin: 0cm;">
<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
Questions
that came up: <o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
How much
thought is being given to the cost in terms of time and energy that it takes the patient
group to do this? <o:p></o:p><br />
<br /></div>
<div style="font-size: large; margin: 0cm;">
How can
patient groups running on a shoestring
with few resources do a drug submission effectively?<o:p></o:p><br />
<br /></div>
<div style="font-size: large; margin: 0cm;">
Is this
small number of groups who make submissions a good representation of the voice
of patients and the public generally?<o:p></o:p><br />
<br /></div>
<div style="font-size: large; margin: 0cm;">
What
about the idea of independent financial support for patient
groups?<o:p></o:p><br />
Are we asking too much of patient groups? We invest in clinical evidence, why not patient evidence?<br />
<br />
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<div style="text-align: center;">
Just the facts? </div>
<br /></div>
<div style="font-size: large; margin: 0cm;">
Dr
Ahmed Bayoumi, who is a member of the Common Drug Expert Committee, asked in the panel whether patient
groups have the agency to speak for their patients. <o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
Dr
Bayoumi said with patient submissions the decisions made are better
decisions - that statement left patients in the room with questions. How do we know that our submissions really have an impact and can possibly change a decision?<br />
<br />
Barry Stein of the Colorectal Cancer Association of Canada said he is disappointed that patient experience is most often used to enrich, rather than change, reimbursement and coverage decisions.<br />
<br />
Are patient groups working so hard on submissions for drug after drug, just so that the decisions made in meeting can be “better”?<br />
<br />
What about the reality that qualitative research and experiential results are heavily discounted in favour of ‘real' evidence from trials and quantitative research?</div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
<div style="margin: 0cm;">
<span lang="EN">How often do we call patient experience evidence? Why do we not call it patient evidence? -- Frank Gavin<o:p></o:p></span></div>
<div style="margin: 0cm;">
<br /></div>
<div style="margin: 0cm;">
<span lang="EN">What terms do we use to describe patient input? Information is a neutral term, but patient information is not seen as data -- Frank Gavin<o:p></o:p></span></div>
<div style="margin: 0cm;">
<br /></div>
<div style="margin: 0cm;">
The panel talked about evidence vs advocacy. We are dichotomizing this form of evidence. How do we incorporate it?<o:p></o:p></div>
<div style="margin: 0cm;">
</div>
</div>
<div style="font-size: large; margin: 0cm;">
<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
Gail
Attara said that understanding the
patient perspective is important. "Is a fifth medication for a condition
needed?" She answered Yes, if you are a patient for whom the first four
didn't work. Also that the patient's individual goals and decisions may not
always follow evidence.</div>
<div style="font-size: large; margin: 0cm;">
<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
Sarah Berglas:
Need to work with patients to capture big ideas on acceptability of treatment,
"how life is lived, not just survival"<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
Those of
us attending the panel discussion got concrete advice on making our submissions to the Common Drug Review have more impact and be more useful.</div>
<div style="font-size: large; margin: 0cm;">
<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="margin: 0cm 0cm 0cm 36pt; text-indent: -18pt;">
<!--[if !supportLists]--><span lang="EN"><span style="font-size: medium;">1.</span><span style="font-size: 7pt; font-stretch: normal;"> </span></span><span lang="EN" style="font-size: medium;"> Discussing unmet needs and quality of life is very relevant<o:p></o:p></span></div>
<div style="margin: 0cm 0cm 0cm 36pt; text-indent: -18pt;">
<!--[if !supportLists]--><span lang="EN"><span style="font-size: medium;">2.</span><span style="font-size: 7pt; font-stretch: normal;"> </span><span style="font-stretch: normal;">B</span></span><span style="font-size: medium;">e very specific about
therapy, side effects and challenges e.g. efficacy decreases over time.</span><span lang="EN" style="font-size: medium;"><o:p></o:p></span></div>
<div style="font-size: large; margin: 0cm 0cm 0cm 36pt; text-indent: -18pt;">
<!--[if !supportLists]-->3.<span style="font-size: 7pt; font-stretch: normal;">
</span>Include
numbers if we have them<o:p></o:p></div>
<div style="margin: 0cm 0cm 0cm 36pt; text-indent: -18pt;">
<!--[if !supportLists]--><span style="font-size: medium;">4.</span><span style="font-size: 7pt; font-stretch: normal;"> </span><span style="font-stretch: normal;">I</span><span style="font-size: medium;">nclude strong quotes that "hook into people's brains" and illustrate the authentic voice of the patient.<o:p></o:p></span></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
Advice to
patient groups on submissions: Be specific in what you include and pick
powerful direct quotes. Sarah Berglas, Patient Engagement Officer, CADTH<b><o:p></o:p></b><br />
<br />
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<div style="text-align: center;">
Ducks in a row</div>
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<div style="text-align: center;">
Advice for patient groups from Gail Attara from badgut.org</div>
</div>
<div style="font-size: large; margin: 0cm;">
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<div style="font-size: large; margin: 0cm;">
<span lang="EN">If<span class="apple-converted-space"> </span>patient<span class="apple-converted-space"> </span>groups<span class="apple-converted-space"> could </span>make submissions in person it would be more satisfying. Why can't patients comment on draft reports like other experts?<o:p></o:p></span><br />
<span lang="EN"><br /></span></div>
<div style="font-size: large; margin: 0cm;">
Patient
group submissions are heavy on quotes, testimony and voice. Patients have the
feeling that lived experience can’t compete with clinical data when the end
result is up to the funders. Some patient groups wonder how much of a difference their input makes.</div>
<div style="font-size: large; margin: 0cm;">
<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
There is a need to develop patient capacity.<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
<br /></div>
<div style="font-size: large; margin: 0cm;">
I'm always conscious that patients
have no strong networks to enable us to stay in touch and connect in between
events like CADTH.</div>
<div style="font-size: large; margin: 0cm;">
<o:p></o:p></div>
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<br /></div>
<div style="font-size: large; margin: 0cm;">
HTA
provides the facts: ethics judges the facts. All who are affected need to be
heard. Are patient values represented in HTA?<o:p></o:p></div>
<div style="font-size: large; margin: 0cm;">
There is
limited operational (action-oriented) guidance to assist HTA with the
evaluation of ethical issues.<br />
<span lang="EN" style="text-indent: -18pt;"><br /></span>
<span lang="EN" style="text-indent: -18pt;">Even at the Plenary we heard this question</span><span lang="EN" style="text-indent: -18pt;">: How do patient groups organize
so they can feed into changes within the health care system?</span><br />
<span lang="EN" style="text-indent: -18pt;"><br /></span></div>
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<div style="text-align: center;">
<span lang="EN">A slide from Dr Ahmed Bayoumi's presentation</span></div>
</div>
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com0tag:blogger.com,1999:blog-8533911831400192848.post-39292244359832555622016-03-23T09:33:00.000-04:002016-10-10T11:24:25.769-04:00Arthroplasty of the MCP Joints (New Knuckles)<span style="font-size: large;">If you had rheumatoid arthritis (RA) diagnosed in the 80's, or if your RA has been very aggressive, you might know the meaning of the title. Otherwise it sounds like medical jargon that you need to go home and google. </span><span style="font-size: large;">As an involved patient I always want to know what medical language means.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The story starts with a surgeon who must have been tired of describing procedures to patients. He put up a hand to stop my questions at the first visit, when he laid out a plan that ultimately involved straightening my fingers. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">However when he said this process would take 3 operations that was the end of the road. With a full time job I could not afford the time to have that much surgery. His plan was to fuse both wrists and then straighten the fingers - I found out on my own that this is the best way to proceed. His explanation of his reasoning was not 'patient-friendly.'</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Once I retired I was able to take the time to start with surgeries. The results of <a href="http://bit.ly/1PWnVHx">operation #1</a> were very successful, so after a year I went back to have a second wrist fusion. With both wrists immobilized and with the new found ability to turn my hand palm up, I was ready for the grand finale and just in time, because my fingers were getting worse and using them was getting more difficult. </span><br />
<span style="font-size: large;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS365XRSXf21GbiqDnKSdGtcmgnhUHReOBTwlwCJipI8juhklVreNPaAF0rI_VWXGszNAsawePUS8XS5Puoh3lv8H0xI-4C4vY5ckOPfIwwAneNCxdRW0tPFVoiVR7reqsoanpAoqLZjI/s1600/annettepalmBefore.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS365XRSXf21GbiqDnKSdGtcmgnhUHReOBTwlwCJipI8juhklVreNPaAF0rI_VWXGszNAsawePUS8XS5Puoh3lv8H0xI-4C4vY5ckOPfIwwAneNCxdRW0tPFVoiVR7reqsoanpAoqLZjI/s320/annettepalmBefore.jpg" width="320" /></a></div>
<div style="text-align: center;">
How much worse? This much</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: left;">
<span style="font-size: large;">But - when I went back to the surgeon, he said "Too bad you didn't have this done when I suggested it because I'm retiring." Not the most sympathetic doctor, but also not the only one in the city.</span></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">Now it's done and I have new knuckles. Despite telling <a href="http://bit.ly/1eOpsnH">Debby's story</a> of success with this I had doubts, especially when a trusted friend told me that doctors in her city were no longer willing to do this procedure.</span></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">However, with a US friend who has RA finding that three of her fingers were so badly displaced that she has lost hand function I carried on.</span></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">This is a picture of what I believe my knuckles look like on X-ray now. I don't have an x-ray of my own since the doctor did not do one. Now I have an implant in all 4 of my knuckles (MCP joints).</span></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCqZamrsdvHdvKLr6S4Hfww3sZZvrpeAlvi1qvjelRC7yMUMj84P3KGc_AIyF95eRbmsdHyhCdDRWt6pkOG4kc6hWBKpc9mDa6dzEbbvGLbiEzxBzSIez1sfvh2HEdWuFPGeRfGymOJOc/s1600/KnuckleImplantarthroplasty.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCqZamrsdvHdvKLr6S4Hfww3sZZvrpeAlvi1qvjelRC7yMUMj84P3KGc_AIyF95eRbmsdHyhCdDRWt6pkOG4kc6hWBKpc9mDa6dzEbbvGLbiEzxBzSIez1sfvh2HEdWuFPGeRfGymOJOc/s1600/KnuckleImplantarthroplasty.jpg" /></a></div>
<div style="text-align: center;">
Silastic implants</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: left;">
<span style="font-size: large;">You might wonder whether the operation was a success.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">It was done ten weeks ago. </span><span style="font-size: large;">I started in a cast, then graduated to various splints. Every week the Occupational Therapist would adjust both the night splint and the one I wore during the day. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The day splint became smaller as I was able to gradually start moving my joints more and to start on a gradually increasing exercise program. I felt that the splinting and the exercise program were as important to the operation's success as the surgery. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNBUbgMRddm74Gg40iiYGbR8GLUxAx_OG-WeEHL9PMDGhT_wXxc_zkml9TQGdy1D3ztMmtvLLlDZysx6jsRHDhrmPKEKSCZLyDmtvA8jGFQrJQFEx620xcBxdiiBC9VYm4RqHAeK-_O1w/s1600/MCPNightsplint8858.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNBUbgMRddm74Gg40iiYGbR8GLUxAx_OG-WeEHL9PMDGhT_wXxc_zkml9TQGdy1D3ztMmtvLLlDZysx6jsRHDhrmPKEKSCZLyDmtvA8jGFQrJQFEx620xcBxdiiBC9VYm4RqHAeK-_O1w/s320/MCPNightsplint8858.jpeg" width="240" /></a><br />
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<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<br /></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span><span style="font-size: large;">Now I am able to write again and to type faster. The occupational therapist who is still helping me advised me to wear a small splint to keep my fingers straight during the day, and a splint from fingertips to forearm at night. In retrospect I think that the surgery was only half of the procedure - occupational therapy and dynamic splinting was vital for the final success.</span></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">Here's the finished product - my hand today! Better than before.</span></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj151hwCHJvL4TM5JDiYwYduLQg9NPgLAWGSx6k3iyXUZPn1VBZ9Elvhn3un2-yl55sIfS6BZO6mEPsX_AJCgUPBxJ18cGNBgUwt_9LwQIlojuAIsLCc2hq_vlwPHJv1ch-EodHJu8b-xI/s1600/HandMarch2020169230.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj151hwCHJvL4TM5JDiYwYduLQg9NPgLAWGSx6k3iyXUZPn1VBZ9Elvhn3un2-yl55sIfS6BZO6mEPsX_AJCgUPBxJ18cGNBgUwt_9LwQIlojuAIsLCc2hq_vlwPHJv1ch-EodHJu8b-xI/s320/HandMarch2020169230.jpeg" width="311" /></a></div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span style="font-size: large;">It's a perfect example of the teamwork between professionals that is required for the best results to patients.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Perfection is impossible, but I expect to be able to use my hand for a lot more years now, and better long-term function was the main reason I had the surgery.</span><br />
<span style="font-size: large;"><br /></span>
<br />
<span style="font-size: large;"><br /></span></div>
Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com11tag:blogger.com,1999:blog-8533911831400192848.post-31814682678053651262016-03-16T13:06:00.001-04:002016-03-19T00:27:35.818-04:00HCSMCA in Vancouver<span style="font-size: large;">The #hcsmca symposium </span><span style="font-size: large;">felt like a family reunion, or a live in person tweetchat</span><span style="font-size: large;">, from walking in the door of the
room in the morning, right until I left for home.</span><br />
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<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
Feels as though we've known one another for a long time</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;"><br />
The atmosphere in the (un)conference room was excited and exciting. Robyn Sussel was an
excellent moderator and starting with a prayer for the day from
Syexwaliya of the Squamish Nation was an inspiring beginning.<br />
<br />
Pat Rich talked to us about only building what you can maintain, and
quoted @Berci. "I want every medical professional and
empowered patient worldwide to feel connected to many others... when they have questions
or just need a good word or support. Social media has the potential
to become this bridge between people"<br />
<br />
Colleen Young talked about the strong sense of belonging and the
give and take in social media - the way the Twitter welcome wagon is
ready for anyone. And one of the biggest achievements of social media is that it
helps people to take a step back - it breaks down silos, is a
fountain of plain language, and creates circles of trust and real
conversations. We need that trust to be able to share<br />
<br />
So we all came to Vancouver to do more of that, and to try to make a
road map to see HCSMCA into the future. <br />
<br />
Larry Chu asked us how we use technology to break through silos and
achieve mutual trust and inclusivity.<br />
<br />
Lee Aase gave us sharing and learning from the Mayo Clinic and
talked about how having a group of co-belligerants helps break
through the blocks such as patient privacy. </span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;">His point about
healthcare shifting and emphasizing respect over power was chosen
as one of the top 10 ideas of the day. Larry Chu added to that with "How might we improve healthcare if we focus on respect instead of power?"</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;">Another idea from Lee Aase "Don't let perfect be the enemy of good." </span><span style="font-size: large;">and a top idea from Colin Hung "Change the world locally." That one is worthy of a shirt.</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;">More advice from Colleen Young "Model the behaviour that you want to see and spend time on the people who do model it."</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;">Then with these two memorable statements -</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;">"Take one bite out of the elephant at a time." Robyn Sussel</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;">"The Law of Two Feet - You can move to another group at any time."</span></div>
</div>
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<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: large;">- we were ready for <i><b>12 challenges in 50 minutes.</b></i></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br />
I picked Challenge #7: <a href="http://bit.ly/1LqDsnh" style="font-size: x-large;">Using social media to advocate for policy change</a><br />
<span style="font-size: large;">Deb Maskens submitted it and led the group. It was a real learning experience for me.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">We talked about engaging with policy makers, strategic positioning of advocacy, mutually beneficial partnerships, moving from slacktivism to interactivism, the qualitative shift in how people are engaging now.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Incremental change is a key as we ask why research, evidence and common sense do not carry the day. Question: What is respectful political advocacy?</span><br />
<span style="font-size: large;">One obstacle noted is that when patient groups meet with the opposition party they lose credibility with the government.</span><br />
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<span style="font-size: large;">Another important barrier is the structural exclusion of advocates from decision making.</span><br />
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<span style="font-size: large;">Our group of Canadians using social media, who have a passion for changing the healthcare system, had a very rich discussion about changing the system - in fact we decided to start using a new hashtag (I just checked and we will be the first) #HCsystemChange. </span><br />
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<span style="font-size: large;">We sent ourselves a postcard from the future, and since this very useful conference also gave us the ability to keep in touch with one another, we will be working on making some progress.</span><br />
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<span style="font-size: large;">All of the challenges had ideas that were usable. I think the largest challenge we are faced with is making use of what we learned, and keeping in touch with our community. The value of community was obvious at the Unconference, and I think we all learned how effective it is to have the whole team working on solutions.</span><br />
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<span style="font-size: large;">Personally #hcsmca has made a large difference to my life and seeing virtual community change to real life community in BC was a powerful experience.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Meanwhile I look forward to the next Road Trip!!</span><br />
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Andre Picard with delegates from #hcsmca<br />
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<span style="font-size: large;">More ideas:</span></div>
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<span style="font-size: large;">Proceed until apprehended. Pick a back-burner idea and go for it on Monday.</span></div>
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<span style="font-size: large;">Involve patients.</span></div>
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<span style="font-size: large;">Use technology to support patients.</span></div>
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<span style="font-size: large;">Don't let perfect be the enemy of good.</span></div>
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<span style="font-size: large;">How do we listen to and use stories and then turn the stories to action?</span></div>
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com3tag:blogger.com,1999:blog-8533911831400192848.post-84859571367074218092016-02-17T20:06:00.002-05:002016-02-17T20:09:36.794-05:00Intimacy, Sexuality and Sjogren's Syndrome. Sjogren's National Conference 2015<span style="font-family: "arial" , sans-serif; font-size: 14pt;">In comments and feedback to the Sjogren's Society of Canada members have indicated a wish to hear more about a topic that is usually kept in the closet - intimacy. In 2015 we had a great speaker who gave us useful information about intimacy and sexuality.</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">Many of us have brought this issue up during doctor visits and have found that many health care providers seem to be uncomfortable with this topic and do not offer much advice. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">Since this is so crucial to maintaining our relationships, we were happy to hear Iris Zink, a Rheumatology Nurse Practitioner and President of the Rheumatology Nurses Society, speak on the topic of "Intimacy, Sexuality and Sjogren's Syndrome." Her advice sounded excellent for people with any chronic disease.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">Normally she lectures to audiences of health care professionals across the United States. In her role at the Beals Institute she is known as "the sex lady" and I think we may have been her first audience of patients.</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">I elect Iris Zink as our most memorable and original speaker ever. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">When I first noticed her in the room on the morning of the Conference I wondered about her red and silver boots but I had no idea that underneath her ordinary white jacket she was wearing a Wonder Woman cape.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;"> </span><span style="font-family: "arial" , sans-serif; text-align: center;"> Note the pointer in Iris's right hand</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">Her no-nonsense talk was straightforward and clear - we can't keep treating Intimacy and sexuality as the elephant in the room. Embarrassment on the part of the patient and healthcare provider results in no discussion.</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">Elephant in the room</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">It was too bad her audience wasn't bigger. She got her message across in a very compelling way - so much so that if Iris wrote a book I would give copies away as a public service. Her lecture was helpful for patient and provider communication, as well as for patients and their spouses.</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">She told us that 66% of patients with hip and back Osteoarthritis, 62% with Rheumatoid Arthritis and 71% with Fibromyalgia have difficulties with sexual problems. </span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">She stressed that we should accept what we've got, and told us the brain is 90% of sex, the skin only 10%. Her presentation went over well with the mixed audience. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">The main issue is how we start the conversation and how we communicate with each other. For instance: Complete this sentence - "I miss ............." when you and your partner discuss intimacy. Talk, touch and practice. She defined sex as the ultimate union of the body and the mind.</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">Don't forget your Kegel exercises, men too. She suggested doing Kegels 30 minutes before sex to increase the blood flow to that part of the body. <o:p></o:p></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">Her talk was </span><span style="font-family: "arial" , sans-serif; font-size: 18.6667px;">optimistic and empowering. Most of the people in the room were smiling at the uninhibited style and the anecdotes and cartoons that drew us in. </span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 18.6667px;">We were even given homework to do with our partners:</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 18.6667px;">1. Talk to one another</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 18.6667px;">2. Spend 30 minutes touching each other without intercourse or orgasm</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 18.6667px;">3. If you are interested in steamy sex talk you have to practice.</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 18.6667px;">4. Know your body and what makes you aroused</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 18.6667px;">5. Date!!! Make it a priority!</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 18.6667px;">All who wanted came home with catalogs so that we could have a look at some of the possible intimacy enhancing products.</span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">References:</span><br />
<span style="font-family: "arial" , sans-serif; font-size: 14pt;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: 14pt;"><span style="font-size: 18.6667px;">Iris Zink wrote an article called "</span><a href="http://bit.ly/1PZIQNZ" style="font-size: 18.6667px;">A Rheumatologic Perspective on Intimacy and Chronic Illness</a><span style="font-size: 18.6667px;">" for The Rheumatologist - an official publication of the American College of Rheumatology (ACR).</span></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: 14pt;">A <a href="http://1.usa.gov/1PPDGAH">study by Bitzer and Platano</a> that Iris referenced concluded that "sexual problems are frequent in many clinical conditions, but are not yet a routine part of diagnostic workup and therapeutic planning." She mentioned that 40% of ObGyns don't ask about sexual function.</span></div>
Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com1tag:blogger.com,1999:blog-8533911831400192848.post-34786922433551913602016-02-02T01:13:00.004-05:002016-03-19T17:55:07.639-04:00The Real Rheumatoid Disease: You Mean It's Permanent?<div class="MsoNormal">
<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: large; line-height: 107%;">Usually the pain and worry of rheumatoid disease (RD) is not a topic on my blog. In a change from positive strategies and ways to cope with chronic illness I'm going to talk about the worries that arise as we age with RD, based on my point of view as well as a few friends.</span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: large; line-height: 107%;">You can become discouraged with chronic disease. Even when you are doing everything right, enjoying life and being productive in ways that are important to you, you wake up every morning and RD is still there. That's why the groundhog is our symbol. </span><br />
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<span lang="EN-US" style="font-family: "arial" , sans-serif; font-size: large; line-height: 107%;">Since this year's topic for RD Awareness Day on February 2 is <u>The Real Rheumatoid Disease</u>, here are some concerns expressed by women who have been dealing with it for a long time.</span><br />
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<span style="font-family: "arial" , sans-serif; line-height: 17.12px;">RD just never stops - it's as determined and persistent as the people who live with it are. The day never comes when we can relax and feel on top of our health.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: large; line-height: 107%;"><b>Polly's view</b></span><br />
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<span style="font-family: "arial" , sans-serif; font-size: large; line-height: 107%;">I think of Polly as my RA twin. We were diagnosed at the same age and have a lot in common. Here are some comments from her:</span></div>
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<strong><span style="font-family: "arial" , sans-serif; font-size: large; font-weight: normal;">"Who knows when they're
first diagnosed that Rheumatoid Disease (RD) is more than stiffness, an 'old
persons disease' or claw-like fingers?" </span></strong></div>
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<span style="font-size: large;"><strong><span style="font-family: "arial" , sans-serif; font-weight: normal;">She says that people think you get RD when you're old, but it’s not always true. You get RD when you're young and
you're in shock. I was upset lately when a doctor said to me "We don't see hands like yours anymore." </span></strong></span><br />
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<strong><span style="font-family: "arial" , sans-serif; font-size: large; font-weight: normal; line-height: 107%;">A doctor told her, "Well you know you're 65 and you're going to get something..." She told
him that she's "had something" for half her life. Her plan is to switch doctors and find one less dismissive</span></strong><strong><span style="font-family: "arial" , sans-serif; font-size: large; font-weight: normal; line-height: 107%;">. </span></strong><strong style="font-size: x-large;"><span style="font-family: "arial" , sans-serif; font-weight: normal; line-height: 107%;">Sometimes she gets tired of fighting it all.</span></strong></div>
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<strong><span style="font-family: "arial" , sans-serif; font-size: large; line-height: 107%;">Julie is a bit older<o:p></o:p></span></strong><br />
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<span style="font-family: "arial" , sans-serif; font-size: large;">Julie says try being in your 70's!! She always has good advice, and is pleased that </span><span style="font-family: "arial" , sans-serif; font-size: large;">most of her doctors haven't given up on her and keep trying to help.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: large;">She feels that her long-time Internist is the most
apprehensive at the same time as she appreciates his help. He's the person who has seen her going down-hill and sees all the records from other physicians.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: large;">I like her definition of old:</span><br />
<span style="font-family: "arial" , sans-serif; font-size: large;">"I don't consider people in their 60's elderly. </span><br />
<span style="font-family: "arial" , sans-serif; font-size: large;">I have read that 65
to 75 is "Young" old</span><br />
<span style="font-family: "arial" , sans-serif; font-size: large;">75 to 85 is "Old"</span><br />
<span style="font-family: "arial" , sans-serif; font-size: large;">and 85+ is "Very" old."<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: large;"><br />She agrees with Polly that other diseases or conditions piggyback on the inflammation
of the RA or the medications that we have taken.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: large;"><b>Polly</b><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: large;">Polly thinks we're not rewarding to our
doctors anymore because as RD damage and effects start to pile up there
isn’t much that can be done. </span><br />
<span style="font-family: "arial" , sans-serif;"> <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;"><b>Ally has complications</b></span></div>
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<span style="font-size: large;"><span style="font-family: "arial" , sans-serif;">Ally worries about the healthcare system making life harder for those who have
chronic or terminal illnesses. (She's making a statement here about
COPD and Emphysema.) </span></span><br />
<span style="font-size: large;"><span style="font-family: "arial" , sans-serif;"><br /></span></span>
<span style="font-size: large;"><span style="font-family: "arial" , sans-serif;">"It is just the opposite of good medicine for the
patient, to increase stress, discomfort. Waiting for test results that take forever to be processed is not good
medicine. </span></span><span style="font-family: "arial" , sans-serif; font-size: large;">They live out of a book and we live out of our bodies.</span><span style="font-family: "arial" , sans-serif; font-size: large;">" </span></div>
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<span style="font-size: large;">
</span><span style="font-family: "arial" , sans-serif;"><span style="font-size: large;">She also sympathizes with doctors who have</span></span><span style="font-family: "arial" , sans-serif; font-size: large;"> protocols on how many patients they must see in a day. She thinks that their constant running does not equate to good medicine</span></div>
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<span style="font-family: "arial" , sans-serif;"><b>Jane</b></span></div>
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<span style="font-size: large;"><span style="font-family: "arial" , sans-serif;"><br /></span>
<span style="font-family: "arial" , sans-serif;">I just had my first lung scan.</span></span><br />
<span style="font-size: large;"><span style="font-family: "arial" , sans-serif;"><br /></span></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: large;">"It's terrible when the doc is aware of a problem like crackles in your lungs but
doesn't tell you !!! </span><span style="font-family: "arial" , sans-serif; font-size: large;">I am so tired of fighting for things now. I really feel like just giving in."</span><br />
<span style="font-family: "arial" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: medium;"><b>Back to me</b></span><br />
<span style="font-family: "arial" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: large;">We're no longer young and when we were diagnosed either the treatments were less effective or we could not tolerate them. It's good news that treatments are so much better, but there are still people around who can look back at "the old days" and who are worried about aging with RD. That's a topic where you don't see enough research. Clinical trials are notorious for not including people over the age of 65, and also excluding those who have more than one health problem.</span><br />
<span style="font-family: "arial" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: large;">With the emphasis now on evidence based medicine that exclusion of the older age group is bound to create some doubts about the best treatment in the future.</span><br />
<span style="font-family: "arial" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: large;">In fact there have been studies showing that RD is <a href="http://1.usa.gov/1KXsNPi">treated less aggressively in older patients</a>.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiog4OJBb3NACjcg4NGF6BQG1U3_perFB9lca98m2ivsBiiKkRpwJw7JVNFUhcKN6xBNXHMCDLSgj-VkKJigatIu1wgvTtjCp_yFAhtsiY5b-UbVYzTtWuhYuteTSQc3ojafSGJbVKy_xA/s1600/SkeletonRasta95.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiog4OJBb3NACjcg4NGF6BQG1U3_perFB9lca98m2ivsBiiKkRpwJw7JVNFUhcKN6xBNXHMCDLSgj-VkKJigatIu1wgvTtjCp_yFAhtsiY5b-UbVYzTtWuhYuteTSQc3ojafSGJbVKy_xA/s320/SkeletonRasta95.jpg" width="240" /></a></div>
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<span style="font-family: "arial" , sans-serif; font-size: medium;">Bad as they may be, my bones are better than his bones</span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: medium;">Custom apparel by Cathy Beattie</span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif; font-size: medium;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: "arial" , sans-serif; font-size: large;">This post is part of a <a href="http://bit.ly/1NZNRAf">blog carnival</a> with RAWarrior, Kelly Young. There are 13 contributors.</span><br />
<span style="font-family: "arial" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , sans-serif; font-size: large;">The Twitter hashtag for RD Awareness Day is #TheRealRD</span></div>
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com6tag:blogger.com,1999:blog-8533911831400192848.post-81616687118727505512016-01-12T17:59:00.001-05:002016-01-13T10:27:07.481-05:00Pain: What About Patient Centered Care?<span style="font-size: large;">This week I had a hand operation that involved the rearrangement of bones and tendons. In case you have not read much about orthopedic surgery it often involves power tools, and may cause you to feel pain after the procedure is over and the nerve block wears off.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">In the past I have accepted the usual prescriptions for percocet and Tylenol 3, but this time I refused them since they make me sick to my stomach. Nothing like surgery and throwing up to make you feel really bad.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The plan for another type of pain relief did not work very well at all. I was given a prescription for a</span><span style="font-size: large;"> </span><span style="font-size: large;">different type of pain pill and</span><span style="font-size: large;"> told to take 1 or 2 every 3 hours. How patient friendly is that? How could you manage to sleep?</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvpcDXDwWd-VK0vvUeEO2_i_m_Um7LJ7KcdA5mm0AFV2SAXV0v1UIvL2I94bOBCqVNYbEjsoHkXITvA1Pd9Cwkvt8Njn3F81FVfPN-pUQ4wBsN4QJTLyIVAD8ZkEry28m6m9Z_tXSUyG4/s1600/PainKillerwithAngels.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvpcDXDwWd-VK0vvUeEO2_i_m_Um7LJ7KcdA5mm0AFV2SAXV0v1UIvL2I94bOBCqVNYbEjsoHkXITvA1Pd9Cwkvt8Njn3F81FVfPN-pUQ4wBsN4QJTLyIVAD8ZkEry28m6m9Z_tXSUyG4/s1600/PainKillerwithAngels.jpg" /></a></div>
<div style="text-align: center;">
perfect pain killer?</div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">If these pills were so ineffective that they would only help with the pain for three hours that just doesn't seem good enough. What kind of patient friendly dosage schedule means you take pills every 3 hours? I phoned the surgeon about this and he did not even understand the point I was trying to make.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Let's just imagine we were talking to a Doctor like Victor Montori, who has sympathy for what is now known as the <a href="http://bit.ly/1mTJhOh">burden of disease</a>. I wonder if he might think of a better way?</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLLLb1jATCtfEwZA3E9NtQBrCN1rhSD0xx93P7pq49W6Mwa69izTB57OtcYDJ_HCeMbJg6X6TvgQgRQiM1a8ZAeujzW6nimfHvm2_nmWprwT68dkPMl7ZU38Vf97cgZIAutfNhgZ00R_s/s1600/burdenBigPilll+.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLLLb1jATCtfEwZA3E9NtQBrCN1rhSD0xx93P7pq49W6Mwa69izTB57OtcYDJ_HCeMbJg6X6TvgQgRQiM1a8ZAeujzW6nimfHvm2_nmWprwT68dkPMl7ZU38Vf97cgZIAutfNhgZ00R_s/s1600/burdenBigPilll+.JPG" /></a></div>
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Burden of disease is crushing</div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I was about to delete this blog post until I ran it by a few friends. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">This is what Lucy thought: </span><br />
<span style="font-size: large;"><br /></span>
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<div>
<span style="font-size: large;">"I don't know what it is with pain medication but I think they
think we are all addicts. When I had my knee replaced I had to fight for
more pain medication in the hospital and then when I went home they
gave me barely enough to last two weeks. Thank goodness my doctor agreed
to give me more. Another patient at Physio had hardly been given anything by his hospital and couldn't do his therapy. It was really awful - he
didn't have a GP to go to for help. </span><br />
<span style="font-size: large;"><br /></span></div>
<div>
<span style="font-size: large;">I always meant to talk to my surgeon about this and I will in future as I think it is something they need to look at."</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">And Joanne agreed to an extent:</span></div>
<div>
<br /></div>
<div>
<span style="font-size: large;">"I agree with you on the pain pills and with Lucy's comments. The
drugs they give us going out of the hospital are completely inadequate
both in dosage and in # of pills. I got too little after my hip surgery. Only enough for 3-5 days. I don't
know the equivalence but after the hip experience, I
asked my GP for a prescription in advance of hand surgery and had
plenty of pills. Even that didn't get rid of the pain entirely. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The fact that my pills had acetaminophen in them was also an issue because it would have
taken me above my daily limit. If I have any more surgeries, I will
request drugs in advance from my GP. From 3 surgeries, it doesn't seem
to me that the hospitals will bend on this issue. I hope your pain
begins to subside soon."</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Whatever happened to patient centered care? Is it any wonder that patients don't always follow instructions?!</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">When you obviously have pain, beyond a shadow of a doubt, you can't even get adequate pain relief. That adds even more weight to the <a href="http://bit.ly/1RwKU0b">previous post</a> about the difficulty of getting pain relief with chronic pain.</span></div>
Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com8tag:blogger.com,1999:blog-8533911831400192848.post-83031090018324303422015-12-05T17:59:00.007-05:002015-12-06T00:46:14.102-05:00Aging and Pain Pills: Julie's Viewpoint<div class="MsoNormal">
<span style="font-family: "arial" , sans-serif;">Pain medication is a big issue for those with chronic disease. Julie a US member of our support group has some complaints, based on her experience:</span><br />
<span style="font-family: "arial" , sans-serif;"><br /></span>
<span style="font-family: "arial" , sans-serif;">"Someone who doesn't know what real pain is has made the rules. They are
more worried about drug addicts than patients in pain. It is difficult
to find a doctor who will prescribe pain pills and they keep close tabs
on the number of pills a person can have.</span></div>
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<span style="font-family: "arial" , "sans-serif";">They
were trying to stop the "pill mills" where controlled drugs were being
sold to addicts and they closed down several "pill mills" in Houston.
BUT - at what cost to people who really need pain relief?</span><u></u><br />
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<span style="font-family: "arial" , "sans-serif";">Now, it is very difficult to get pain medication. If a person goes
to a Pain Clinic, they make a</span><br />
<span style="font-family: "arial" , "sans-serif";">the person fill out pages of forms - some
forcing a promise that they will absolutely not get pain medication from any other doctor or place. There is also a page telling people to be very
careful with their pain medication because if a person would accidentally
lose or somehow destroy the pills (by dropping them on the floor or in water etc.) they will NOT be replaced.</span><u></u><u></u><br />
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<span style="font-family: "arial" , "sans-serif";">A drawback of the Pain Clinic model is that patients have an extra appointment every month for
testing and to get another prescription for more medication. A Big
Hassle! and even harder on the elderly and the poor.</span><u></u></div>
</div>
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<span style="font-family: "arial" , "sans-serif";">My
Internist prescribes the lowest number of pills (Hydrocodone) at the
lowest dose for me. He doesn't really want to do that and he said he
only has 2 patients where he will write a controlled drug prescription.
He said he only does it for me because I am a long-time patient, he
knows that I suffer from RA and that I am really in pain. I am hopeful
that he will keep doing that as I don't want the hassle of having to go
to a pain clinic every month, now that I am 80.</span><u></u><u></u></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM1DSLrX2pcpyaef4TTqWFW7pPbJJBzGw92U24PA2poxR53GFS_x0DiU-xfJYjsKe_BmKmELZCPRXy1I-_EAfYFztbRx7wAe82mYZ1gpVc4X-WUWI3xmO4IyAFs1BbFEcklyfC63IGMkI/s1600/DollyCoatLiberace.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="181" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM1DSLrX2pcpyaef4TTqWFW7pPbJJBzGw92U24PA2poxR53GFS_x0DiU-xfJYjsKe_BmKmELZCPRXy1I-_EAfYFztbRx7wAe82mYZ1gpVc4X-WUWI3xmO4IyAFs1BbFEcklyfC63IGMkI/s200/DollyCoatLiberace.jpg" width="200" /></a></div>
<div style="text-align: center;">
Pets can help people deal with pain</div>
<div style="text-align: center;">
<br /></div>
</div>
</div>
<div>
<div class="MsoNormal">
<span style="font-family: "arial" , "sans-serif";">The
insurance companies keep tabs on what and when and how much a person
can receive and they won't let any controlled medication be filled early
- it can be filled 3 days before a person has their last pill. (So if you need pain pills forget that vacation) This is
what my pharmacy told me. Other pharmacies might have different
policies. I do know my doctor will not re-fill a prescription before 30
or 90 days are up depending on the medication. The prescription has to
be on a green prescription paper with all of the doctors drug numbers
on it and it has to be taken to the pharmacy in person and handed to the
pharmacist. It can not be telephoned in or re-filled any other way.</span><u></u><u></u></div>
</div>
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<span style="font-family: "arial" , sans-serif;">Many
of the Pain Clinics will make people try other methods to ease their
pain before they will prescribe medication. This situation really isn't
fair to sick people. Obviously it will help some people to cope with their pain using less medication over time, but we all know that "One size fits all" is a fantasy"</span><span class="im"></span><br />
<span style="font-family: "arial" , sans-serif;"><br /></span>
<span style="font-family: "arial" , sans-serif;">It also makes you wonder why insurance companies have taken on an enforcer role in the war on drugs. I get the feeling that they feel more able to take care of my health than my doctor can and I feel that is wrong.</span><br />
<span style="font-family: "arial" , sans-serif;"><br /></span>
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<div style="text-align: center;">
<span style="font-family: "arial" , sans-serif;">Most of these are going back to the drugstore - wrong strength, now off the market and inferior generic</span></div>
Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com0tag:blogger.com,1999:blog-8533911831400192848.post-60441253654046311752015-11-30T08:02:00.003-05:002015-11-30T22:06:26.913-05:00Patient Relations<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Here's the background on the Patient Relations offices you may have noticed in hospitals in Canada:</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">“A well‐established patient relations structure and process, supported by the
right personnel, is key to identifying gaps between patient expectations and
experiences of care, and managing perceptions of patient expectations and
quality of care.” </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: medium;"><a href="http://health.gov.on.ca/en/pro/programs/ecfa/legislation/patientrelation/update.aspx">From Excellent Care For All Act</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">To strengthen patient relations processes in Ontario’s hospitals... they</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> are required to have patient relations
processes in place and make information on these processes available to the
public. Regulation 188/15 adds to these requirements; specifying minimum
standards regarding the retention of data, providing standards for keeping
patients or complainants informed, and ensuring that hospitals have a
specific patient relations process.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: x-small;">1</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: x-small;"><br /></span></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnpaLmaXi4EeONuYuBjQ66p5qCPZD2vHeIEPlMMTJJpx3WwTE-FeHSlmZSsGa2l4U3l25KSXgzfi3vAdiycYB5Bvm47QicG_7aIwvVp40ahlW1J-czPxcE_ThlcY8jG6s_w-axozULipk/s1600/patientrelationsder.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="92" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnpaLmaXi4EeONuYuBjQ66p5qCPZD2vHeIEPlMMTJJpx3WwTE-FeHSlmZSsGa2l4U3l25KSXgzfi3vAdiycYB5Bvm47QicG_7aIwvVp40ahlW1J-czPxcE_ThlcY8jG6s_w-axozULipk/s320/patientrelationsder.jpg" width="320" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I was lucky enough to attend a conference where many patient relations professionals were sharing information about their work.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Some had inspiring examples of meaningful engagement with patients and family caregivers, where they were regularly collaborating with them on projects and acting on patient ideas and input. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Many talked about plans to start involving patients in their hospitals but had not yet started to work on it. In some cases they were very busy just keeping up with their everyday work. In other cases senior management (or other staff) was not behind their efforts.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">They presented lovely charts and graphs to their peers showing the types of patient issues they had to deal with, and how quickly they were able to resolve problems were presented. But... after hearing my friend's story about a patient issue that she wanted to have looked into, I wondered how they define resolution. When she asked her hospital contact for a progress report on her complaint she was told her case was closed, though she had no word of any results or consequences.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: medium;">Patient Relations can't help this 'patient'</span><br />
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Despite sincere talk of being patient centered, there were a few comments I heard that sounded tone deaf like these two:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">We'll "give" you (ie patients) decision making authority as long as it's a consensus.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And the idea of staff deciding "What is it that you want these people to say?" in the area of changing the conversation in making films for internal staff training makes sense in one way, but can also be interpreted just the way it sounds.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">On one occasion I tried to compliment the hospital on a positive change but my call was not returned. The only time I made a complaint, </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">about an issue that cost me an extra year on a waiting list,</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> I was unhappy with the result. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Patient experience is recognized as a method people use to determine the quality of their care, and the feedback that patient relations offices get reflects the experience. The insight it gives can help to drive change and quality improvement. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I learned just last month that <a href="http://accreditation.ca/sites/default/files/char-2013-en.pdf">Accreditation Canada</a> has made Patient </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">and </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Family</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Centered Care a key standard starting in 2016. The presentation I heard at their workshop was impressive and their resolve was unmistakable.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The big difference, and you may have seen signs of this already, is that instead of doing things 'for' and 'to' patients, they will now focus on doing things 'with' patients. That means we'll see more information sharing, partnership, participation and collaboration.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">If you're a patient who thinks things could be better in health care there's no better time to try get involved personally. The door is opening up for us as patients, or as family caregivers to make a difference.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: medium;">1. <a href="http://bit.ly/1YhvxKX">From Health Quality Ontario</a> Striving For Excellence in Patient Relations Processes in Ontario's Hospitals</span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com0tag:blogger.com,1999:blog-8533911831400192848.post-87654914154486782082015-11-26T09:25:00.001-05:002015-11-26T11:12:49.292-05:00New Experience: Blogging With an Editor<span style="font-size: large;">Last month's guest post for GeriLynn Baumblatt of Emmi Solutions was a different experience of blogging for me. Her topic for Health Literacy Month was Health Care Transitions and it took a lot of thought to find something in my health experience that qualified as a transition.</span><br />
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<span style="font-size: large;">After I submitted the idea and we discussed the first draft I felt reassured by working with Geri Lynn to fine tune the post. Usually my husband and I are the only critics.</span><br />
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<span style="font-size: large;">And I'm wondering, though I only have to ask, about the etiquette of being a guest blogger and whether I can post the blog here too.</span><br />
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<span style="font-size: large;">Possibly not so I present the link to the post <a href="http://bit.ly/1OimUx0">here</a>. The Title is "Graduating From Patient School: Health Literacy and Care Transitions" and is the story of how the naive patient I was at the before my diagnosis turned into the aware patient I am today.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVFrwe48irdo0VVp1xfrmWD9a3GcYmoDs1iN6TFqr3xvESet7JyhV2WCwD3Y4bdHNeYbOwgvwzzr1estMsgWovPl1F0q1iylBucobEDZFcUA2vpsqzoFEvD4PXp-cTWvNzshAm6gC5YvM/s1600/gerilynngraphic1200x627-01.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="167" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVFrwe48irdo0VVp1xfrmWD9a3GcYmoDs1iN6TFqr3xvESet7JyhV2WCwD3Y4bdHNeYbOwgvwzzr1estMsgWovPl1F0q1iylBucobEDZFcUA2vpsqzoFEvD4PXp-cTWvNzshAm6gC5YvM/s320/gerilynngraphic1200x627-01.png" width="320" /></a></div>
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The graphic she used was apt: How do we turn on the light bulb and change?</div>
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<span style="font-size: large;">It took so many years to make that change - maybe if more information like what we access without a thought now, had been available then, the process would have been faster.</span><br />
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<span style="font-size: large;">The post was part of a series about Health Literacy and covered many types of transitions. You can see the rest of the stories <a href="http://bit.ly/1LBhg2C">here</a>.</span><br />
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<span style="font-size: large;">PS to readers: I love the picture of the girl and the giant pill and am guilty of using it again this week to make a point.</span>Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com0tag:blogger.com,1999:blog-8533911831400192848.post-27131293572021579462015-11-24T14:31:00.002-05:002019-02-28T14:59:00.889-05:00Where's my Prescription Summary, Shoppers Drug Mart?<span style="font-size: large;">When I first saw the new Shopper's Drug Mart prescription receipt I did not understand what I was seeing. It changed to a label the size of a name tag with the backing still on it. I could peel it off but then what would I do? Maybe the idea is that I start a prescription scrapbook? </span><br />
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<span style="font-size: large;">I mentioned the difficulty I anticipated trying to save these slippery labels with 5 point type for my income taxes and my pharmacist said that I could ask for a list of the dollar value of my prescriptions every year for income tax purposes. That's a service that can help me, BUT I still need and want the listing of my last 20 prescriptions.</span><br />
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<span style="font-size: large;">For me that list has been an essential tool. With it I can accurately give details of my medications to doctors. I also use it to list medications on forms at the hospital and in the Emergency Department. On Twitter yesterday some doctors said they also use those lists to go over medications with their patients, especially those who don't really know the medications they're taking.</span><br />
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<span style="font-size: large;">Yet now that feature has been withdrawn with no notice, and no concern for patients, caregivers, doctors and customers.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqEOBClV1p1NENUSZPC348tBDIoEIoi5GOPhoP-o-9Mhge2IYZA91Hz4wzU0DdUXW1bmGJO_zZVJ9mXFhHkYbETmpP2xc-6cSJ3guNTriIWBXSQ3cZXI4N89qldvq6dB8i0s1X1XWCaWg/s1600/PillburdenBigPilll+%25281%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqEOBClV1p1NENUSZPC348tBDIoEIoi5GOPhoP-o-9Mhge2IYZA91Hz4wzU0DdUXW1bmGJO_zZVJ9mXFhHkYbETmpP2xc-6cSJ3guNTriIWBXSQ3cZXI4N89qldvq6dB8i0s1X1XWCaWg/s1600/PillburdenBigPilll+%25281%2529.JPG" /></a></div>
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Burden of care is added to by having no list.<br />
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<span style="font-size: large;">When I look at the Loblaws Corporate website I see Chairman Galen Weston saying "We understand the breadth of our impact and influence." I appreciate that sentiment but wonder how many doctors and patients were consulted about this change that has a fundamental effect on my ability to manage my drugs and prescriptions.</span><br />
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<span style="font-size: large;">I like the idea of the patient, family doctor and pharmacist as the basic unit for regular health management and decision making. But now, at the same time as Shoppers takes on more health services such as flu shots and Med Checks for profit, they are stepping back from the patient's needs.</span><br />
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<span style="font-size: large;">My pharmacist responded to the problems I raised with:</span><br />
<span style="font-size: large;">"We all change and we expect our customers to change too." </span><br />
<span style="font-size: large;">"You have to manage by yourself somehow." </span><br />
<span style="font-size: large;">"Our expectation is that the patient will keep track of their medications."</span><br />
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<span style="font-size: large;">Excuse me Shoppers, I am a highly literate patient and that is just one of the areas where I have challenges. Luckily at this moment I am not in a crisis but many of your clients are struggling with their health. Many of us stagger from crisis to crisis.</span><br />
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<span style="font-size: large;">What about our aging population, people with low vision (</span><span style="font-size: x-small;">Did I mention the 5 point type on the receipt</span><span style="font-size: x-small;">?</span><span style="font-size: large;">), and the more than <a href="http://bit.ly/1XcM1a3">half of Canada's population</a> who are not health literate? </span><br />
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<span style="font-size: large;">Another <a href="http://www.loblaw-reports.ca/responsibility/2014/index.html#2">statement on the Loblaw's website</a> (Loblaw's owns Shoppers) is this: "Our strong commitment to corporate social responsibility defines the way we do business and the role we play in society."</span><br />
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<span style="font-size: large;">These statements do not match the Shopper's Drug Mart withdrawal of their useful and traditional prescription lists. </span><br />
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<span style="font-size: large;">I hope they will look for a solution to this problem which is either happening to us now, or will soon be apparent at a Drugstore near you if you are a Shopper's Drug Mart customer.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR-Uk_fYwq0i20nBrvc4Tbeb4hNpA3YJnPx09OLB97ikS5122wd0S6fdnx7gw0bzdhu5Tol76ICd-OsoXOazOU7pU6YHtmu9cePCXZizF0FYGyCvO0DWvbZvCCHS4X6t4o7k05rAhL5lI/s1600/ShoppersHealthWatch.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="99" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR-Uk_fYwq0i20nBrvc4Tbeb4hNpA3YJnPx09OLB97ikS5122wd0S6fdnx7gw0bzdhu5Tol76ICd-OsoXOazOU7pU6YHtmu9cePCXZizF0FYGyCvO0DWvbZvCCHS4X6t4o7k05rAhL5lI/s200/ShoppersHealthWatch.JPG" width="200" /></a></div>
<span style="font-size: large;">This is the top section of the form we will no longer be receiving.</span><br />
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<span style="font-size: large;">Added after another visit to Shoppers: The pharmacist was able to produce a list for me on two full sheets of letter size paper that covered fewer prescriptions than the small summary of 20 that I am used to. Not convenient for me to carry and keep with me but at least I can use it for renewals. Not a solution, but as a stopgap it will help, though it required a lengthy conversation with the pharmacist before I was able to get that printout.</span><br />
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com8tag:blogger.com,1999:blog-8533911831400192848.post-64270971852081613772015-11-13T23:26:00.001-05:002018-01-21T22:05:31.296-05:00Change: Not the Kind You Need<table cellpadding="0" class="Bs nH iY" role="presentation"><tbody>
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</td><td class="Bu yM"><br /></td><td class="Bu y3"><span style="font-family: "arial" , sans-serif; font-size: 16pt;">More verbatim stories from the Support
Group...</span></td></tr>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;">It's been a
long time since I put my change into a wallet.<span class="apple-converted-space"> </span>Now<span class="apple-converted-space"> </span>I
just drop all the change straight into my purse - If I need some I shake the
purse and scoop some up. It's too heavy to carry around so I follow Julie's
example:<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;"><br />
"I take any change out of my purse and put it in a container on my
dresser. When I have a bunch of coins, I give all of them to John and he
either rolls it, uses it or takes it to the bank. I don't usually pay for
much of anything." <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;">Polly has a tougher time.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;"><br />
"My hands are claw-like now except for the thumb and the forefinger. I
keep forgetting I don’t have use of those fingers like I used to so I am always
dropping things.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;"><br />
Today I was standing in line and 5 cards from my credit card pouch fell to the
floor......the lady behind me picked them up. Then another one dropped
and she picked that one up for me. Thank you! GOOD GRIEF! I
have to remember that only my thumb and forefinger are viable. The rest
are just taking up space.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;"><br /></span></div>
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<span style="font-family: "arial" , sans-serif;">Hard to type when your hand is not straight</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;"><br />
Julie has another issue:<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;">"You were talking about hands
and fingers. The other day, I needed to copy a bunch of papers and went
to my main big printer and it would not work! It said there was a paper
jam that we could not find. I was also trying to use the automatic feed and the
paper got caught in there. I finally got it working, but black streaks were on
everything and the paper came out wrinkled.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;"><br />
<!--[if !supportLineBreakNewLine]--><br />
<!--[endif]--><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;">Meanwhile, I thought that I would
just use the other wireless printer. Turned it on and it was
out-of-ink! Sent John to the office supply and he brought home 5 new
cartridges (that is what the wireless printer takes). I decided that I
would change the cartridges while John was gone - big mistake! Each
cartridge was completely sealed in plastic and I had a devil of a time getting
the plastic off. Then an orange plastic thing has to be turned to be
taken off before installation. By this time, I could barely move my
hands/fingers. Then, I could not get the old cartridges out as it has to
be done with the bad fingers. Finally, after an hour, I was able to complete
the task, but could hardly use my fingers.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;">I went back
to the main printer and found where the black streaks were coming from and
cleaned them off. Then, still - each copied paper came out wrinkled at
the top of the page. I almost took the printer apart looking for a reason
but finally just threw all of the paper in the paper tray away and put in a new
load of paper. I finally got it working without streaks or
wrinkles. My fingers/hands still have not recovered. It is such a
nuisance to have such bad hands and fingers"<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16.0pt;">Polly commiserates:<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16.0pt;"><br />
Isn't it frustrating to have to jump thru hoops to get things that should be so
easy?"<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16.0pt;"><br />
I know what you mean about those cartridges and then to get them out of the
plastic casing. Good gravy!! Wow, five cartridges...that’s
frustrating to fight with that. I would be sweating after 10 mins. It
is awful to have such bad hands. Are they still sore? What an ordeal for
you.....<o:p></o:p></span></div>
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<div style="margin-bottom: .0001pt; margin: 0cm;">
<span style="font-family: "arial" , sans-serif; font-size: 16.0pt;">I need to buy a wrist brace. I wonder if I
could get it on myself? If I can't work with the fingers I have I
wonder if the brace would make it worse...more bulky. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16.0pt;">I don’t need more stuff to impede my 52 pick up
fingers. Even just getting things on the conveyor belt is an obstacle for
me. I kind of fling the items up there."<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16.0pt;">And Julie provides people with a distraction:<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 16pt;">I wear my wrist brace a lot and
people don't look at my hands/fingers much - they are looking at my wrist brace
and then I tell them that I have arthritis. Then, they start showing me
osteoarthritis in their fingers and saying how much their thumb hurts - turns the
attention away from me.<o:p></o:p></span></div>
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com0tag:blogger.com,1999:blog-8533911831400192848.post-79747855035285182742015-10-31T15:04:00.003-04:002015-11-01T09:53:00.866-05:00Kidney Week and RA<div>
<span style="font-family: Arial; font-size: medium;">This blog starts with a patient story, just the way we are told that many hospital and heathcare meetings begin.</span><br />
<br />
<span style="font-family: Arial; font-size: medium;">Julie has rheumatoid arthritis (RA) and knows about CKD (Chronic Kidney Disease) from experience.</span><br />
<span style="font-family: Arial; font-size: medium;"><br /></span><span style="font-family: Arial; font-size: medium;">"There are different levels of CKD
depending on how well the kidneys work. My Kidney disease is at Stage
2. My kidneys work at 42% of what might be considered normal. Most
people's kidneys don't work as well when they age, but mine are worse. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFbftGwa8SLUjoJGGdQllZCBpGGhfXodJps7ey6VAeCHIkXcvj4q8qKNQKBqlmSHXeaSZ2EhWS9ypk1GbYHJqhQ8M95ychhkrPDC54Xh7bWecr5QkkqNwZVEKeil90zv4IvASEH77JRMo/s1600/KidneyEtsy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFbftGwa8SLUjoJGGdQllZCBpGGhfXodJps7ey6VAeCHIkXcvj4q8qKNQKBqlmSHXeaSZ2EhWS9ypk1GbYHJqhQ8M95ychhkrPDC54Xh7bWecr5QkkqNwZVEKeil90zv4IvASEH77JRMo/s320/KidneyEtsy.jpg" width="312" /></a></div>
<div style="text-align: center;">
<span style="font-family: Arial;">From etsy shop YourOrganGrinder. Buy yourself a kidney</span></div>
<span style="font-family: Arial; font-size: medium;"><br /></span>
<span style="font-family: Arial; font-size: medium;">I actually have no symptoms. People don't usually have symptoms until
the numbers get much lower. I do have to keep my blood pressure under
control and can not take several medications - like NSAID'S, Tylenol,
biologics, etc. The Vicodin that I take has a small amount of Tylenol,
but my doctor said that was all right. He sees many patients who have
kidney problems from the NSAID'S - they have taken too many. </span><br />
<span style="font-family: Arial; font-size: medium;"><br /></span>
<span style="font-family: Arial; font-size: medium;">A man who John worked with was taking Advil like candy for his osteoarthritis and
went into kidney failure. He had to go on dialysis for a period of
time until they were able to get his kidneys working again.</span><br />
<span style="font-family: Arial; font-size: medium;"><br /></span></div>
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</span><br />
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<span style="font-family: Arial; font-size: medium;">My problems all started with a
medication that I took - Vioxx (a cox-2 NSAID). It put me in to
kidney dysfunction 6 weeks after I started it. Vioxx is now off the
market because mainly because </span><span style="font-family: Arial; font-size: medium;">it was affecting </span><span style="font-family: Arial; font-size: medium;">the Hearts of people that took
it. But - it affected my kidneys. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOvhAJEeGJ9n7QWWQulDxBpd5Rh7XpmOMqeEhzfKM8ick_Pay1etbjgqa6ppU9BZaMTkeR849IQwsDJkMHC7gQ8Zn1oTP12KQHb6I2i3vBEZ3Lff7Cq3SCCsUe78tbw1Nd6pKwk-DaUvE/s1600/Vioxx.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOvhAJEeGJ9n7QWWQulDxBpd5Rh7XpmOMqeEhzfKM8ick_Pay1etbjgqa6ppU9BZaMTkeR849IQwsDJkMHC7gQ8Zn1oTP12KQHb6I2i3vBEZ3Lff7Cq3SCCsUe78tbw1Nd6pKwk-DaUvE/s1600/Vioxx.jpg" /></a></div>
<br />
<span style="font-family: Arial; font-size: medium;">After stopping the Vioxx, my
kidneys returned to close to normal but apparently more kidney problems
showed up later - you know how the inflammation of Rheumatoid Arthritis likes to attack
internal organs. My Internist sent me to a Nephrologist (Kidney
doctor) and he has been checking my kidney levels ever since. I have
extensive renal tests every year. So far, I have remained at a stable
number."</span><br />
<span style="font-family: Arial; font-size: medium;"><br /></span>
<span style="font-family: Arial; font-size: medium;">I have had a draft of this story from Julie for a few months now but today seemed to be the perfect time to post it.</span><br />
<span style="font-family: Arial; font-size: medium;"><br /></span>
<span style="font-family: Arial; font-size: medium;">This morning the #HealthXPh tweet chat, run by doctors in the Philippines was about dialysis. You can see the blog <a href="http://healthxph.net/social-media/challenges-chronic-dialysis-patients-face-and-how-to-address-them.html">here</a>. This treatment for CKD is hard for anyone, with 3 dialysis sessions a week being ideal. Imagine how much more of a burden it is in a country where personal income is much lower.</span><br />
<span style="font-family: Arial; font-size: medium;"><br /></span>
<span style="font-family: Arial; font-size: medium;">A few hours after HealthXPh I saw Bernadette Keefe's (@nxtstop1 on Twitter) storify of events leading up to next week's <a href="https://storify.com/nxtstop1/american-society-of-nephrology-annual-mtg-hashtag-">nephrology conference</a> celebrating Kidney Week November 3rd to 8th. </span><br />
<span style="font-family: Arial; font-size: medium;"><br /></span>
<span style="font-family: Arial; font-size: medium;">If you're on Twitter the hashtag for the conference is #kidneywk. There are scary stories about kidneys out there - one is the urban legend about waking up in a bathtub of ice with your kidneys stolen. Kidneys are small but necessary.</span><br />
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Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com0tag:blogger.com,1999:blog-8533911831400192848.post-59355858549460996922015-10-18T11:45:00.002-04:002019-06-13T00:00:27.767-04:00Hats or Silos? You Be the Judge<br />
<span style="font-size: large;">The more involved I get in being active in the health area, the more "hats" I collect. When my chronic disease was my sole area of focus, my aims were clear. Now that part of my story has become the background to efforts to change the system. </span><br />
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<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaAV-5MJ1qqqyX5Yc_MOJICI2ZScWetKM-zKTzY9VZnbv1REzgkiognuweWR-sZYqX4vk2QLHBN4tr7NxHQkGQXibDxUrJHwaM7cX2qeEJKvDlelfum35GvVA4Q4ZIZ5VVn5Upbl5SNgY/s1600/crophatwizard91.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaAV-5MJ1qqqyX5Yc_MOJICI2ZScWetKM-zKTzY9VZnbv1REzgkiognuweWR-sZYqX4vk2QLHBN4tr7NxHQkGQXibDxUrJHwaM7cX2qeEJKvDlelfum35GvVA4Q4ZIZ5VVn5Upbl5SNgY/s320/crophatwizard91.JPG" width="164" /></a></span></div>
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<div style="text-align: center;">
Research Role</div>
<div style="text-align: center;">
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<span style="font-size: large;">There are opportunities now for patients to be involved in research </span><span style="font-size: large;">funded by </span><span style="font-size: large;">SPOR (Strategy for Patient Oriented Research), which was set up to help, enable and encourage patients to take this opportunity to add their unique viewpoints to medical research.</span></div>
</div>
<div style="text-align: left;">
<span style="font-size: large;">I'm on some research teams and doing my best to fit in, learn new skills and influence the projects through providing the patient point of view. I was asked to take an ethics course (TCPS-2) that is a requirement for researchers. It turned out to be useful that I had started the process to register with CIHR to be a volunteer board member. There's a lot to learn.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyBfmlarXLIlg-tnGwFkvVNwGw-nOoHSdmeESIO2HA2faFPGpzHk22_UA0rTDud7WJoj_hlRljCTqplPYVxSVZFGXl4lrlFlogeGU528NSxd6Lz2eXMuk1oVnr4ZuPxn-TlFI2y7OBLIU/s1600/crophatstripe98.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyBfmlarXLIlg-tnGwFkvVNwGw-nOoHSdmeESIO2HA2faFPGpzHk22_UA0rTDud7WJoj_hlRljCTqplPYVxSVZFGXl4lrlFlogeGU528NSxd6Lz2eXMuk1oVnr4ZuPxn-TlFI2y7OBLIU/s320/crophatstripe98.JPG" width="196" /></a></div>
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<div style="text-align: center;">
System/Quality Role</div>
<div style="text-align: center;">
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<span style="font-size: large;">Another role is trying to become involved in decisions about the health care system. The belief that patients are the largest stakeholders in healthcare and should be involved in deliberations and decisions that affect healthcare is no longer unusual. This effort promises to be a long-term, with lots of interesting discussions about what defines "meaningful engagement." Market research techniques like surveys, focus groups and even one on one interviews with consultants make most of us think more about tokenism; not </span><span style="font-size: large;">feel like partners.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPjKsB2sPKZPpUFnI5j1gPg_75HB_pyCwDKywil3CDc5tbGh8phGWVHCjBToPrKNxoA2mxiGGypqiGhLuh681fVf1ad14I7AOJy9KxW4A5VlsuKlAb6kviYfeHCCMo9rviYpjOv8xeb9Q/s1600/crophatsailor86.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPjKsB2sPKZPpUFnI5j1gPg_75HB_pyCwDKywil3CDc5tbGh8phGWVHCjBToPrKNxoA2mxiGGypqiGhLuh681fVf1ad14I7AOJy9KxW4A5VlsuKlAb6kviYfeHCCMo9rviYpjOv8xeb9Q/s1600/crophatsailor86.JPG" /></a></div>
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<div style="text-align: center;">
Hospital/Community Role</div>
<span style="font-size: large;"><br /></span><span style="font-size: large;">We've seen </span><span style="font-size: large;">patients on hospital Community Advisory Boards (CACs) or Patient and Family Advisory Committees (PFACs) in past years. What has changed is that now</span><span style="font-size: large;"> hospitals are required to have a patient and family committee or council - this means that all across Ontario there will be patient advisors involved in every hospital. This will give many more people a chance to learn and contribute with the hospital team. How much effect will this have on hospitals? We'll be watching.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Now that I am a member of a hospital CAC I am wondering how much can be accomplished in five 2 hour meetings a year?</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBWgjG2T7uIYdD4fgJvyXMpseyXC-YAvpaIBL4HtI_BLyCZQupDTQhtuAoFDJsL4aZpX9TgtPoD3COLs5Sp9KaMlJ8fOGq2Julb_AlYd2UOqmrlnq5wdHxHktxb4ipHEbmSg0poCiKGQ0/s1600/crophatpink100.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBWgjG2T7uIYdD4fgJvyXMpseyXC-YAvpaIBL4HtI_BLyCZQupDTQhtuAoFDJsL4aZpX9TgtPoD3COLs5Sp9KaMlJ8fOGq2Julb_AlYd2UOqmrlnq5wdHxHktxb4ipHEbmSg0poCiKGQ0/s1600/crophatpink100.JPG" /></a></div>
<div style="text-align: center;">
Volunteer Role</div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">In addition to those areas, many active patient or caregiver volunteers are working with our own disease groups to promote advances in care, working on changing the curriculum for medical students and doing the huge and often unappreciated job of family caregiver. They manage to do this despite the steep learning curve that is necessary for the care of themselves and their loved ones. As Seth Godin says, "When we confront a vocabulary that we don't understand, we can either demand that people dumb down their discourse (and fall behind) or we can learn the words."</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV9qs7ZZHGyyBWZPUI0G0MgWpRfIxIXq2ungcg0yWGrW-WnqO00jflBn7fsQgMl4uLOf3bryCyGtgsinjlmOY-08ID4McHtJ76qFGFQWpkNkkJlr_6a9vY47RUcPU8Wz_YtjiHesdIvis/s1600/cropballhat81.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV9qs7ZZHGyyBWZPUI0G0MgWpRfIxIXq2ungcg0yWGrW-WnqO00jflBn7fsQgMl4uLOf3bryCyGtgsinjlmOY-08ID4McHtJ76qFGFQWpkNkkJlr_6a9vY47RUcPU8Wz_YtjiHesdIvis/s1600/cropballhat81.JPG" /></a></div>
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Teacher/Student Role</div>
<div style="text-align: center;">
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<span style="font-size: large;">The information we need to fulfill all of these roles takes a lot of work. It's scattered over the internet, given to us by other patients, and found in research. There's a problem with the research though - it looks more like patient engagement is developing as an "emerging area of expertise" (ie new silo).</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Patient needs and system wants are not aligned. It would be useful if there were a course for patients, who are the only ones in the system who are (often) self educated and also volunteers. Patients could be helped with an educational pathway which would add to their professional skills and experiential knowledge and help them gain the knowledge to be part of a person-centered health care system. Then they could go beyond their personal experiences as patients or caregivers and help to improve the health system for everyone.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">I'd like to see the conversation shift a little from talking about patient engagement and look at the other side - system engagement.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">As a patient, being involved in all of these areas is like being able to enter numerous silos. Meetings take more energy because you need to think inside each different silo, even when the connections to other ones are obvious. If we want to talk about overall issues for patients we'll need to start our own Whole Patient Movement or write letters to CIHR. </span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">All of these areas have their own goals: SPOR is funded to focus on including patients in research. Hospitals usually don't involve patients outside of their own institution and attached community and decision makers prefer to involve patients through surveys, focus groups and intermediaries such as consultants so that discussion stays in their pre-chosen framework.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">At Health Quality Transform this year (2015) a separate stream was added to the long-planned program to encompass the patient advisor experience</span><span style="font-size: large;">. This centered on people who are PFAC members and in a patient advisor role through hospitals. It was the only segment live streamed, which was welcome, but I was wishing to see more of the other presentations, that would enrich the whole person, not just one slice of the patient pie chart. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Rather than seeing patients break down silos, patients are having to silo their knowledge and use appropriate pieces of it depending on the circumstances of their encounter. </span><span style="font-size: large;">The patient has many silos within themselves and this just can't be healthy.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">As any grain farmer knows, silos can be deadly. </span>(thanks to Pat Rich for that insight)<br />
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<span style="font-size: large;">The Whole Patient wears a more complex hat</span><br />
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<span style="font-size: large;"><br /></span></div>
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<div style="text-align: left;">
<span style="font-size: large;">Post on authentic patient voice <a href="http://bit.ly/1KxNFXQ">here</a></span></div>
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Definitions and some news from the patient scene</div>
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ImpactBC was a registered Vancouver-based not-for-profit organization that provided coaching and collaboration with health care partners related to quality improvement, and <b>public and patient engagement</b> <br />
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When Deloitte has won the contract to provide this service, the volunteers were asked to volunteer through Deloitte. Outsourced engagement!! (Note: This contract was revoked when the patient volunteers rebelled)<br />
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<em style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 19.2px;"><a href="http://www.cihr-irsc.gc.ca/e/41592.html">Citizen engagement</a></em><span style="background-color: white; font-family: "verdana" , "arial" , "helvetica" , sans-serif; line-height: 19.2px;"> is the meaningful involvement of individual citizens in policy or program development. To put it simply, citizens are "engaged" when they play an active role in defining issues, considering solutions, and identifying resources or priorities for action. This "meaningful involvement" can take place at a variety of stages in the research, planning, or implementation phases of a project.</span><br />
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<span style="background-color: white; line-height: 19.2px;"><span style="font-family: "verdana" , "arial" , "helvetica" , sans-serif;">"<a href="http://www.hc-sc.gc.ca/ahc-asc/pubs/_public-consult/2000decision/index-eng.php">citizen engagement</a> is the meaningful, timely and appropriate involvement of individuals and potential support systems in policy development, program planning and implementation, research development, and health care decision making. In the context of health care, engagement can occur in the research setting, health are setting, and policy setting.</span></span><span style="font-family: "verdana" , "arial" , "helvetica" , sans-serif;">Is it to inform/educate, gather information/views, discuss through a two-way dialogue; fully engage on complex issues; or partner in the implementation of solutions</span><br />
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<span style="font-family: "verdana" , "arial" , "helvetica" , sans-serif;"><a href="http://www.hc-sc.gc.ca/ahc-asc/pubs/_public-consult/2000decision/index-eng.php#a12">Inform, consult or engage?</a></span><br />
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<a href="http://www.iap2.org/" target="_blank">International Association for Public Participation</a> (IAP2): “Public participation communicates to participants how their input affected the decision</div>
Anethttp://www.blogger.com/profile/02831501899415936152noreply@blogger.com0