Patients as Partners in Health Research

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)

VIC 20

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 book collection 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, patient engagement and working for change in health care looked more interesting and rewarding.  

eROAR 2014

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 - Evolving Patient-Researcher Collaboration: A Case Study of a Patient-Led Knowledge Translation Event

Another early collaboration was a SPOR funded demonstration project, 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 included a set of additional tools for evaluation. 

So, if you are a patient thinking about getting involved in research you might have a few questions

• Why would researchers want to or feel compelled to engage with patients? 
• Are there benefits on both sides?
• How do interested patients and researchers find one another? 

and then think about why the status quo has changed from what was normal practice in the past ie no patients.

One of the reasons for change would be the policies of the organizations that fund research. Here are quotes from three of them.

CIHR (Canadian Institutes for Health Research) “At CIHR, we want to help transform the role of patient … to a proactive partner who helps shape health research and, as a result, health care”

The SPOR (Strategy for Patient Oriented Research) program at CIHR - " Patients need to be involved in all aspects of research to ensure questions and results are relevant"

IMHA (Institute of Musculoskeletal Health and Arthritis)
encourages 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. 

There are many ways to include patients on research teams, starting with the application where the most obvious is the Patient Engagement section. There are  numerous areas for patient influence such as the

Summary where patients can add relevance from the public point of view

Knowledge Transfer Plan -- Include marketing for reach and impact

Team roles – define roles of citizen partners or panel, if chosen

Patient engagement – add an excerpt of the partnership strategy

Timelines – it takes time for researchers to develop an engagement plan and recruit patient partners

Budget – include costs of recruitment, participation and support.
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.

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. 

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.

Course

Name/Funder

Participants

Master Class

McMaster/SPOR

Patients, Researchers, Decision makers, Clinicians

Partners in Research

St Mike’s/Li Ka Shing & SPOR

Patients and Researchers

CIHR Core Curriculum

CIHR

Patients and Researchers

PaCER- Patient and Community Engagement Research

Alberta Health Services, Cummings School of Medicine

Patients

Western University University of Waterloo PORTL-PHC (Patient-Oriented Research Training & Learning- Primary Health Care) 4 modules  Available online** Some of us have taken the TCPS-2 Ethics course or other courses like those above. Of course if we need to do a CIHR CCV 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.

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.

 Slide from Patient Advisors Network (PAN)

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.

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 enthusiastic patients.who are willing to be involved.   

As an example, for the Health Minister's Patient and Family Advisory Committee (PFAC) in Ontario there were 1200 applications.

The CHI Partners conference received 170 applications for about 12 spaces.

The Partners in Research course fills up very fast and has wait lists.

So, how do researchers find patients and caregivers who want to be research partners? 

One idea is through a community of practice for patients called The Patient Advisors Network which is a national Canadian group. Members can share opportunities to get involved on the groupsite, after they join.

There is also a provincial Support Unit of SPOR in every province which may give you tips for involvement, and in BC there is a group of 700 patients and caregivers called Patient Voices Network.

    

You might also find potential collaborators on Twitter, where the clinician, researcher and patient community is quite robust.

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.

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.

ARC is also the group that produces ROAR which is a collaboration of patients and researchers presenting arthritis research.

#eROAR is an annual event done live and by webinar and tweetchat to showcase research done by ARC. You can find the 2018 videos here.

Here's one of my favourite efforts to make science understandable for everyone. 

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.

Alan Alda founded the Flame Challenge organization and the prizewinners are fascinating.

** Are you interested in taking the program?
Contact Program Coordinator: Rob Van Hoorn
rvanhoo@uwo.ca to sign up.

Patient Partners In Arthritis

There's an ongoing discussion among patients about the education of doctors.  Considering how many people see doctors for musculoskeletal (MSK) problems, and how frequently these visits occur, I think it gets relatively little time in medical school.  Certainly when it comes to awareness of Inflammatory Arthritis there's a long way to go to raise the knowledge level of everyone out there.

To help improve awareness of various types of arthritis among medical professionals there has been a  nonprofit program called Patient Partners in Arthritis used in Canada for the last 17 years.

The patients who volunteer must have a confirmed diagnosis of arthritis and feel comfortable talking about their disease and interacting with all levels of health care providers. They complete an in-depth training program that prepares them to demonstrate joint examinations and provide a real life medical history that illustrates the problems and issues that arise with both osteoarthritis and inflammatory arthritis.  That covers a lot of ground.

                         Patient Partner member ready to participate

Everyone knows the value of a good story. You see stories everywhere from commercials to mystery novels. They add interest to dry facts (and bones). 

                                            Bones of the hand (Toronto Western Hospital)

I joined Patient Partners and I think that right now I am the newest member.  I have learned a huge amount from the training and from the rheumatologists who are present and contribute to some of the Patient Partner sessions.

Currently the program is used in 10 Canadian universities as part of the MSK education of medical students, residents & other health care providers like nurses, occupational therapists and physiotherapists.

"The program is based on the principle that arthritis is a chronic condition and people living with it are often the most knowledgeable about many aspects of the disease." (from The Arthritis Society website)

It has helped me to gain confidence about my knowledge of anatomy and most days I participate I learn new facts.

The Patient Partners training is led by the same person to provide consistency and reviews are done regularly to maintain standardization. 

In a typical session Students learn joint examination techniques and are able to see and feel the joints of patients with a variety of MSK problems. The students realize the impact of arthritis better with a personal story along with the feel and look of damaged joints and restricted movement.  Feedback from students indicate that it is a better learning tool than pictures or a didactic lecture.

The last time I saw my orthopedic surgeon, the Fellow who was working with him had encountered the program in the Maritimes several years previously when he was a student . He remembered the session well.
.
One way used to demonstrate the feel of an inflamed joint is through the use of chocolate covered almonds and grapes.  No surprise to my fellow patients to hear that it's the squishy grape that feels like an inflamed joint.

Grapes from ThirdAge.com                

This is a successful 'hands on' Canadian program which I wanted to spotlight.

Volunteering With Chronic Illness

Many people diagnosed with a chronic disease become very knowledgeable about their health problems.  Some like Kelly Young turn their expertise and skills into a world-wide platform.  I read that 10% of people with Rheumatoid Arthritis Disease in the US are members of  RA Warrior    We all appreciate her advocacy and her awareness efforts with doctors and with government.

                                                                             Kelly Young


Another example of people with RA helping others is the project initiated with RA Guy's call for pictures of hands that resulted in the Show Us Your Hands project, which turned into an international movement to raise awareness of inflammatory arthritis.  The team that worked on this went on to produce a poster and a book for sale as a fundraiser.  What a successful project that is!!

Show Us Your Hands

Many others contribute through blogging and by providing on line support for their peers on Twitter, Facebook and online groups. Of course those in clinical trials also make a very concrete difference. There is a real spirit of teamwork in the chronic illness community.

                                                                  Teamwork

Aside from the online opportunities there are some programs that it's possible to participate in in real life if you are lucky enough to be close to a center that supports them. 

There's a very colourful patient I recently met who is most enthusiastic about the Health Mentor Program which I also take part in.  Health Mentors are defined as people living with chronic health challenges.  They meet and interact with groups of students in various health disciplines such as nursing,occupational therapy, MD, social work, physiotherapy and pharmacy.

In the groups the students explore the impact of a health challenge, collaborative assessments,ethics and professionalism, and patient and client safety.  I can't speak from a student point of view but as the person with chronic illness I find it very interesting to meet students who are on their way to achieving a goal that takes a lot of work and dedication.

The program is run by Sylvia Langlois who is Assistant Professor, Occupational Science and Occupational Therapy at the University of Toronto

The member I mentioned has asked patient participants to blog on his website.  He calls himself and his site Patient Commando so I expected to meet a man wearing camo and boots.  But no, he's one of us - a person living with chronic illness who is trying to do something about it and who has encouraged like minded people along the way.

                                   Zal Press Patient Commando
You've got to agree that this is a man who gets noticed.  Patient Commando creates social impact by providing platforms that amplify the patient voice.  Here's a  link to their site with 3 patient stories about the Health Mentor Program.

And here's a bonus link to a quiz that can help you to determine what kind of a volunteer you are:  http://www.getinvolved.ca/vquiz/english/   from The Arthritis Society