Looking Forward to MedX

Last year I was an ePatient Delegate to MedX; once it was over I was able to call myself an ePatient Scholar. 

Being there was an experience that changed me. Even though I made some super-klutzy moves that I will keep to myself, I have no regrets. Meeting so many Twitter friends and powerful patients who speak my language was an irresistible draw.

This year I won't be there, so you might ask, why am I looking forward to MedX? 

I'll be trying to watch on the livestream, but on Saturday I'll be at an all-day session of a Citizen Advisory Group, and on Sunday will be in a participatory meeting ensuring that elderly Canadians and their caregivers will have their voices heard.

Events like these were not on my calendar prior to Medicine X. It changed the way I look at the health care system and the role of patients in it. It also affected my confidence in the ability of patients, (including myself) to be involved in decisions about health care.

MedX is more than just a three day experience for the patients who attend - they all have work to do to prepare themselves. Giving an Ignite talk is more than just standing up and talking for five minutes. The presenters work on the Ignite talk all summer - they consult, prepare and practice.

The IDEO Design Challenge showed a different way to learn and think - reading books on Design Thinking, watching videos, and preparing the ideas - the "How might we..." statements that the prototypes are based on.

The ePatients on the production track work hard too - blogging, tweeting and publicizing the event before, during and after the conference. In addition there were other team building projects so that by the time  ePatient Delegates arrive at MedX they feel like part of a team.

You might wonder how this connects to looking forward to this year's MedX for me when I will miss so much of it?

The reason is that this process, the work that the ePatients do means that when the candidates arrive at Medicine X they are prepared - equipped for the conference, enthusiastic and ready to be changed.

Seeding like a dandelion (Sydney, Australia)

And that's what I look forward. Seeing more patient advocates develop larger profiles as coming year unfolds, seeing the connections they make help their work grow and spread, seeing more people who are empowered and confident of their abilities to change the way things work in healthcare. They're also ready to inspire others, to encourage them to go to MedX next year and create more change.

ePatients don't always just pop up out of nowhere - they need a little sunshine to grow, and that's what MedX is good at, so good luck and have fun to all of the new ePatient Delegates!

Connections. MedX 2012 from @symplur. 

Patients Included: A Charter for Conferences

The Patients Included Charter for Conferences has just been published today, May 1. This post describes some of my feelings about attending conferences as  a patient.

Before attending Medicine X at Stanford University in 2014 I had only been to one medical conference other than those put on by the Sjogrens Society of Canada of which I am a member. 

Once I returned home from MedX it seemed like a natural progression to be involved in and learning in a more public way. After years of support groups, blogs, Twitter and searching for knowledge every day, the MedX experience was a catalyst. Seeing so much enthusiasm for the patient voice and for change in healthcare made me feel that my thoughts and opinions were not fringe ideas any more; they resonated.

After MedX, last September there was a Patient Experience conference that I remembered from the year before - they were widely criticized through social media because there were no patients, either in the audience or as presenters, despite the name "Patient Experience." In 2014 they added a strong patient advocate to the program planning and invited patients to attend and to speak. No one in attendance complained about patients being there, and this year they seem to be following the #patientsincluded model.

The benefits of conferences as stated by a Healthcare Conference company : a chance to "engage in open honest discussion, networking with peers from across the country and leveraging knowledge from leading experts in this field"

The benefits and knowledge available at a conference can be put to good use by any of the team members involved in health care, including patients. In fact when the information learned is useful and novel, it gets shared at the speed of social media through tweets, blogs, chats and even in conversation.  As an example, less than  a week after the CADTH Workshop about Critical Appraisal in Saskatoon I passed the appraisal tools on to my partners in a PaCER research project and used it to inform my opinions in a Health Care Social Media Canada (#hcsmca) tweet chat. That's a speedy way to get it out of the silo.

I think there is no better way of mobilizing knowledge than to disseminate it widely. As Jack Andraka said at MedX we need knowledge democracy and to me that means more than just the facts - patients need lived experience with the healthcare spectrum in an atmosphere where they are people first and patients second.

More than meets the eye to patients

Last night I had dinner with a group of active patients and for interest I asked them for their job titles. This is what I got:

I am a patient  and have a PhD in Cellular Molecular Pathology.

I am a patient and a Speech Language Pathologist.

I am a patient and an IT Professional on the IBM Watson Health Team.

I am a patient with 20 years of experience in qualitative research.

I am a patient and a senior project manager in IT.

There is always more than meets the eye.

The impetus to have patients included in conferences has been part of the engaged patient movement for years, with Tom Ferguson laying the groundwork, with Lucien Engelen creating a logo to be used where patients are included, and now with Andrew Spong and an international group working together to create "A Charter For Conferences." It has been introduced on Friday May 1 and this blog fully supports the Charter.


To find links to more blog posts about the Charter watch #patientsincluded on Twitter.

Traveling With an Invisible Disability

Traveling with a mostly invisible illness is difficult. It can make you sound neurotic when your concerns about problems seem trivial to others who have the power to help you. Generally I take advantage of any help that is available. When I went to California for the Medicine X Conference in September I booked a flight with no stopovers that went direct to San Francisco. That was a big plus. 

Air Canada offers help to people with disabilities who register in advance. In practical terms this means after I check in they will take me that long distance to the gates at the airport in a wheelchair or little vehicle. I'll give a gold star to Air Canada for making life easier, without even a fishy eye as in "You look perfectly fine to me". The other issue with the wheel chair is the that going through customs usually involves a long line and standing in line is actually harder than walking. Missing that experience helps me.

I do go somewhat out of my way to remind myself, and to help others realize that I can't carry heavy things. When travelling I invariably wear my wrist braces because it's a lot easier than explaining over and over.

I travel with older splints so breakage or loss will be less critical.

On the way home to Toronto from San Francisco I asked at the gate if there were any rows that had empty seats but was told the flight was fully booked. An hour into the flight when I got up and looked around there were many empty seats. After I explained to the flight attendant that my fused wrists meant it was a problem to maneuver in a small space they gave me another seat. The other two people in my row were delighted to see me leave. That's an example of the value of making a reasonable request in a non-confrontational way

I've learned a good lesson about getting cheaper hotel rooms. This doesn't work when the hotel you want to be in has a big conference, since they are generally full in that situation, but if not I check the prices on the cheap sites like Trip Advisor for instance. Once I have that price I phone the hotel direct and say I would like to book a room but I found it listed cheaper online. Usually they will match or better that price for you. This was a tip from a front desk person in Nanaimo and has worked very well as a money saver. The hotels get so little money from the online sites that when you book that way you are often put in a little room by the ice machine. 

The harbour in Nanaimo from our hotel room

I also ask for a room with grab bars in the bathroom. That helps and usually the rooms have other useful touches for disabled guests. 

Customs and pills is a worry: The drugstore that I use made a set of small labelled vials for prescription drugs marked "For Travel". That helps reduce the volume of pill containers and gives me "official" pill vials. 

For vitamins I used a muffin tin and saran wrap that sticks to itself to make little "pill pockets".

Long ago I got tired of pulling out tubes and containers of creams and moisturizers so I now put them in these sample size jars. It saves a lot of wear and tear on my hands and they last weeks between fillings.

For my one "personal item" allowed on the plane in addition to my carry-on on for the flight I chose a backpack. It's roomy and easy to handle. That makes it great for hands-free shopping and carrying a computer, cables and rechargers.

For the plane I take my Tranquil Eyes goggles in case it was too drafty or bright during the flight. Using them can help dry eyes from Sjogren's Syndrome, help you sleep or ease a migraine. 

Tranquil eyes

This post is part of a blog carnival for the Hurt Society Blog Carnival ePatient Travel Edition. Link to be added

Chronic Diseases: More the Same Than Different

In September I wrote a guest post called "A Day In The Life" that appeared on HealthiVibe. Jeri Burtchell is doing a series of patient stories and has branched out to include chronic disease beyond her own. That's easier for me to understand now than it would have been a few years ago.

One thing I have noticed during tweet chats with patients is that people with ongoing health problems have a lot in common. Whether it is finding information, planning doctor visits, developing a website to help others, or just advocating for being included in decision making in healthcare, the disease doesn't matter as much as common issues about which we are passionate. Many topics that I instantly dismissed as not relevant to me have led to useful discussions and new friends.

In ovarian cancer, lung cancer, rare disease, diabetes or being a caregiver, I have found in all of these topics there are more similarities than differences. That may be part of the reason that the ePatients at Stanford Medicine X became a strong community so quickly, often greeting one another as if we were long lost friends rather than strangers.

Recently I came across a new issue that concerned me and where advocating passionately for myself in person had no effect on "the policy." When I was back in my natural habitat (in front of my computer) I realized the obvious - patients on social media are no longer alone. When I tweeted about my issue I found others across the country who felt the same and also agreed that we needed to work for change.  The issue is now an area of discussion with policy makers. We hope positive results will come from our meeting.

Including the patient voice in healthcare decision making can have impressive results, as I found out during the IDEO Design Challenge. Maybe it is time for a new sign.

Graphic by Lucien Engelen

Here are some links to Patients Included blog posts

One by Susannah Fox
And Leslie Kernisan

And I'll end with a quote from ePatient Dave speaking to a conference organizer: 

"I say this: want to know if you have Patients Included? Ask this: “Are there any actual sick people in the room?”

Medicine X is Close and has a Global Access Program

Alan Brewington (@abrewi13010), an ePatient Scholar, issued a suggestion to ePatients attending MedX this year. I took it as a challenge to write a post about the Who, What, Where, When and Why of Stanford Medicine X.

2013 MedX painting by Regina Holliday

In the What section it sounds as though Dr Larry Chu's brainchild conference with a capital C is well established as the most popular conference on Twitter, and Symplur has the graphs and charts to prove it. My favourite one of all shows the conversation between participants physically at MedX 2013 and then expands to show all of the links and connections all over the world. I also love to see video mapping of the way that conversations on Twitter spread through groups and individuals. If you look at this page you can see a time lapse video map of the conversation in 2012, and last year the number of tweets was up 170% from then.

The Who of MedX from my patient view includes many of the people I've been following, listening to, or conversing with on Twitter. Last year I watched as much of the livestream as I could, while I followed the conversation on Twitter at the same time. It was an immersive experience. Despite the obvious fact that I was not in California and was wearing "sitting around at home" casual clothes, I was exhausted after the three days ended and the real life participants flew home. I'm really excited to be attending in person as an ePatient delegate this year. 

Of course I'll be dressed

In addition to the people I think of as friends already there are experts from many areas of health care and innovation. Last year Jack Andraka was so quotable. This year the presenters include keynote speakers such as Daniel Siegel, MD, clinical professor of psychiatry at UCLA and author of The New York Times bestseller Brainstorm: The Power and Purpose of the Teenage Brain and panel discussions like those about emerging technologies in mental health led by Malay Gandhi, chief operating officer of Rock Health, a business accelerator for start-up companies in health-care technology.

What is MedX? To a patient advocate it is far more than a great place to connect with others who share your point of view (at least some of it). It's a place where you're exposed to startling new ideas, meet some of the people you "see" every week (virtually), and where you form bonds that last well after the conference is over.

On the plus side though, even at home you can get a lot of that feeling through watching and tweeting. There are many reasons that being there in person is not possible for ePatients and this year Medicine X has a new feature. There is a special Global Access Program available internationally to ePatients, academic scholars and students so that they can participate virtually in addition to watching on the web. To use this interactive access you can register here for the conference on September 5th to 7th. With this you can see the main stage speakers.

Feel free to spread the word about this to others in your own community. It sounds as though Medicine X is using design thinking. Using the question "How might we....? as a starting point they have found a way to include many more people in the conference.

The schedule is full of events I don't want to miss and people I can't wait to see, so whether it is virtual or in-person I hope to see you there. 

Word Bubble from Medicine X 2013

Last year the Medicine X was a revelation of patient inclusion. The conferences I have been to or seen advertised since then are notable for excluding patients through high admission, tokenism, or stating "We're all patients" even when they use terms like patient-centric or patient engagement in the conference designation. Here's a quote from an ePatient Scholar

“Medicine X is all about people working together toward changing health care for the better, and everyone is welcome,” said e-patient Hugo Campos. “Patients are on an equal footing with all other participants, and that’s fundamental for fostering true partnership toward change.”

The “X” in Medicine X is meant to evoke a move beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health. For the Global Access program X also represents what it costs to tune in to the live stream. X is the value virtual attendees get from the experience. X is what it’s worth to be included. X is up to you.

"Stanford Medicine X is a catalyst for new ideas, designed to explore social media and information technology’s power to advance medical practices, improve health, and empower patients to participate in their own care. "

With Medicine X less than a month away and a visit from grandchildren you may notice a summer hiatus here at Rheutired blog.

Blogging and Connections

When I started to blog I gradually realized that I had good practical tips learned through being a patient with chronic illness for over thirty years. That's the first reason I blog and share details of my own health on social media.

I jumped in head first

As a patient I had already discovered that the best way to find the in-depth learning I needed was to talk to communities of patients. Sjogren's World helped me to realize I had Sjogren's Syndrome long before I got a diagnosis. I joined a yahoo group of people with shingles who held my hand and supported me with information from their experiences. In another more social group, after ten years we share the good and bad as life goes on. 

On the #MedX Engage/Empower course and Twitter discussion on February 20th, 2014 I heard Gilles Frydman @gfry and Roni Zeiger @rzeiger talk about the way patients form networks of microexperts and "amplify the collective intelligence of the members."

I think that's what we're all trying to do with our blogs. Add another voice to the rivers of patient experience that are starting to grow in strength and power. The current is moving away from the patriarchal hierarchy where health care knowledge is held by a few. 

You never know who your audience is

My life with chronic disease developed in the usual way. I started with pain, depression and feeling that I was weak and unable to fully participate in a normal life. It was not possible for me to have a full life in all of the areas that were important. If I worked full time then social life, career development and even family would suffer due to lack of energy. I proceeded like this for years - my doctor said my RA was well-controlled but obviously the lack of energy affected my life so his version of "control" did not match what I expected.

Love to give directions but hoped for more energy than an inukshuk.

But there were some turning points - when I successfully advocated for treatment change and another when an offhand compliment encouraged and even energized me.

Now I have adapted to the life I have and the results have been unexpected and positive.

The second reason I blog and share on social media is that I benefit too. This statement from the research paper below really makes sense to me.  

Communicating the Experience of Chronic Pain and Illness Through Blogging  by Pamela Katz Ressler, RN, MS, HN-BC,#1 Ylisabyth S Bradshaw, DO, MS,#1,2 Lisa Gualtieri, PhD, ScM,#2 and Kenneth Kwan Ho Chui, PhD, MS/l

"Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations.
Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness."

It's all about the connections. There's no other way possible to connect with such a great group of people involved with and interested in health care at every level.

Connections

This post is part of a blog carnival: "Why do you blog or share through social media about your illness?"

http://restoringqualityoflifeblog.org/2014/03/05/blog-carnival/

Here is a link to a previous post that I called Fruit vs the Blog exploring the question of which is better for your health - eating fruit or blogging? Of course there's no way to compare.

A Day In the Life

The members of the support group I've been in for ten years were thinking about Rheumatoid Awareness Day which occurred this week. In talking about A Day in their Lives with chronic disease some memorable comments came up.

Rosie says "One that you can't avoid considering is the extra diseases we have to deal with. Sometimes I wonder whether it matters if the fatigue is caused by my RA, Sjogren's or Fibromyalgia. This morning my eyes felt like they were sticking to my eyelids. Eye drops help but not enough."

Julie says "I know the first thing on my list is stretching/exercising my feet (so I don't get that awful plantar fasciitis) and trying to stand up, move and get my house coat on.

Then, I get in my Chair/stair lift that takes me downstairs.  I could go on from there and maybe I will do that.  I also use a knife to open up those "easy-open" tabs on milk cartons, etc." 

Lily says "I have a pill bottle opener that looks like this one.

My friend Ali bought it for me years ago and I use it every day."

I have asked my pharmacy to make sure that they put my medication into containers that are easy to open.  If it's child-proof, that's the same as RD proof for some of us.

Patti talked about bottles of all kinds "Some bottles I have found incredibly hard to squeeze, so I avoid buying them; some plastics are just too hard to squeeze. Like honey,mayonnaise,mustard, shampoo. I would also wish for RA to be more widely known about and understood, rather than people thinking you just have the odd achy joint."

She also mentions the problem of being stranded in snow and unable to shovel your way to your mailbox, another expense you don't need on a limited income.  She had to have a special car ignition key turner made because she could no longer use the regular key after her fingers got bad. She carries a rubber pad in her purse in case she needs to turn a doorknob.

I think Patti's rubber pad is a rubber circle like this to help with grip. (Canadian version)

The new cars with push button ignitions are much easier to start. It's so simple to get in the car and drive.

Also on the plus side Lily really enjoys being able to take as long as she needs to get ready in the morning. "One thing RA/RD has given me is the gift of time." (at a cost of course)

I'd agree that RA has given me a lot too. My life is not what I expected it to be; that's so common with or without chronic disease. 

After I retired I wanted to be able to volunteer in health care especially connected to RD. My wish came true in spades and even though I miss my clients and staff members, I have found my virtual life very exciting. It's quite possible to make your virtual life and your real meet up.

Still I do agree with what @angryblacklady tweeted one day. "Twitter is for introverts" And It was interesting watching the #MedX hangout a few weeks ago. Most the panelists said they were not outgoing so here's hoping when I'm at MedX this year I'll fit in. Though  fitting in at MedX is different from fitting in at most conferences.

Inspiration and Unmet Needs

This past weekend as I watched the MedX livestream and the associated Twitter timeline; I was saving tweets that impressed me. When a panel discussion came up called "Addressing Unmet Needs in Healthcare" I was prepared to take a 'brain rest'. But a week later I was still looking at this series of Tweets and finding them thought-provoking. Seeing a rebroadcast of that panel would help me to learn more. I hope it is posted in the future.

                                      I need real food

Stanford Medicine X @StanfordMedX

"There are 3 types of unmet needs: I didn't know, I know I should, I want to but I can't"-@AmyCueva #MedX

.@StanfordMedX @AmyCueva gr8 points-people often blamed for not doing "I know I shoulds" for health. Blamers don't acknowledge other unmet needs #medX

Susannah Fox‏@SusannahFox2m

3 types of unmet needs. Look for patterns. Anticipate. Take responsibility. - @amycueva #medx pic.twitter.com/DCrgr2s81l

InnoCiter (CarlaNB) @InnoCiter

Via @StanfordMedX: @AmyCueva: look for feelings, triggers, transitions, opportunities, partners #MedX #designthink #hcinno

@nickdawson: " 'No' is a barrier to innovation - it says 'stay comfortable, don't change.'" -@AmyCueva #MedX #designthink #s4pm 

Kathy Nieder MD‏@docnieder1m

@timautrey Talking about the 5C's that affect processes Culture, Conditioning, Content, Context, Choice #medx

"Design thinking starts with 'How might we...?'" -@dennisjboyle #MedX

Stanford Medicine X‏@StanfordMedX 29 Sep"I've never encountered too much of a disparity. At end of the day, everyone wants health. It's just how you get there." @AmyCueva #MedX

Amy Cueva has a powerful message. I suggest that you read Regina Holliday's blog post about the painting she did at Amy's conference called "Health Experience Design 2012." The post is called "Wind of Change."

If you don't know about Regina Holliday's work here is a chance to be introduced to it. It is illuminating to read about the reasoning that makes her paintings so deeply meaningful. She was once accused of being too able to call up emotion when she speaks about the deeply personal mural that started her journey to being a health activist artist. 

It is just not credible. Though I have never met Regina, when I tell her story to others I feel emotional even with such distance from her and Fred. The ideals she fights for resonate strongly with patients and have made her an inspiration. Having one of her Walking Gallery jackets is a great honour to anyone in healthcare.

Informed Consent

It was great to see a conversation about informed consent taking place at Stanford's MedX Conference on September 18. I have  put these tweets in a storify called Informed Consent at MedX. It's an important topic and I was happy to collect them in one spot. The MedX stream went so fast it was hard to get much that is verbatim.

Here's my view on some aspects.

In surgery you expect to know what is going to be done during your operation. Consenting to a procedure based on the expected results is not good enough. For instance for a forefoot reconstruction I don't think it is adequate to be told that your toes will be straightened. For my first operation the only way I was aware of the actual procedure used on my toes was to read the file. The only reason I was able to was that I was left waiting in a hall with my file and nothing to do. Needless to say I was surprised.

                                        Imagine this is me in the hall

That happened years ago but it is a more recent example of how not to do Informed Consent.  For this situation I can almost visualize a Walking Gallery jacket. I was having a toe shortened so I would be able to wear shoes more comfortably. Once I was sedated and lying on the gurney outside of the operating room the surgeon came out for a talk about the two possible methods he could use to do the procedure. As a sedated 'people pleaser", I chose the method that was easier for him and signed the consent. I still have to look at the results every day. It's not pretty. Now only doctors and students see my feet.

                                     (and everyone else  in the world)

In market research we often worked on projects for banks about credit card holders. Basically there are two types of customers. Transactors who pay in full every month and Revolvers who pay less than the balance. You might wonder how this relates to informed consent? 

I found a study about consent stating that many doctors look at the informed consent as a transaction, not an ongoing process. It is something that needs to be dealt with because of potential liability. The idea that it is part of patient education has passed them by.

The whole abstract of this interesting paper is included here because the points the points the authors make are so significant. 

Beyond Informed Consent: Educating the Patient
Lawrence H. Brenner, JD, Alison Tytell Brenner, BA, and Daniel Horowitz, MD

Based upon our interpretation of the literature and experience, we make the following recommendations: (1) The informed consent form is not a substitute for educating a patient. It is merely evidence that appropriate discussion occurred. In addition to assuring that the patient has signed the informed consent document, these discussions must occur. (2) The forms should be designed to be understandable, and all care should be taken to ensure that comprehension is achieved, and the process should be viewed as a tool to educate rather than waive liability. (3) The surgeon should avoid the paternalistic approach in dealing with uncertainty and, instead, use uncertainty as the foundation for forming a therapeutic alliance. (4) A well-educated patient does not need to be presented with an exhaustive list of every conceivable complication. Rather, an educated patient needs to be an active participant in a dialogue about the inherent risks of the surgery that are important to the individual decision-making process, ie, the risks that are specifically of concern to that patient. For example, the complications of hand surgery may be more material to a concert pianist than the average patient. (5) An understandable note in the medical record that a discussion has occurred with the patient and/or the family may be far more effective as evidence of the discussion than a lengthy signed but incomprehensible form.