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.

Learning to be Healthy

This article titled What Makes Canadians Healthy or Unhealthy contains an interesting discussion of why just spending more money on health care will not improve health in the general population. Many of our health problems are influenced by factors we can influence either alone or collectively as a society. 

There was an online article in the news lately talking about the Nurses Study. It stated that if you eat a good diet in your middle years you are more likely to "live long and prosper".  Here prosper means having no diseases that interfere with your work and enjoyment of life.

We have never been in a better position to find out what we need to know to stay healthy. My dad had a book of advice called "Dr. Chase's Recipes" which gave him advice on common illness. More than 100 years ago it was second only to the Bible in popularity, and sold over 4 million copies. We've come a long way since then, and we still have the same desire to know how to take care of ourselves. 

Doctor Chase from my Dad's own copy

You can find so much more accurate information now through online resources than you ever could from Dr Chase.  The internet is like a giant all-you-can-eat buffet. 

The hardest part is discovering which resources will do you the most good. In one sense it's like a first trip to Disney World where every attraction looks equally good. The truth is that they're not equal and planning the trip with a guidebook can help you hit the high points and maximize your time.

So who can you trust for your online research? Everyone says their own site is excellent.  Dr. Google gets more visits than anyone but beware - the loudest voices and top-ranked sites that come up are not always the most accurate.  On the plus side Google has changed the way it ranks sites so that credibility is more likely to be near the top of the ranking.

Knowing who and what to trust is a skill that can be  acquired, but it takes work and judgement to learn to do this. Lectures, webinars and other resources made available by credible and mainstream organizations and advocacy groups are often a good place to start you out on your search. 

Social Support is a plus 

It's when you begin to educate yourself that you need the most help to get on the right path. Here are some ideas:

Sign up for the Reaching Out with Arthritis Research (R.O.A.R.) webinar/seminar which is held in the fall every year in Vancouver Click here for past events and to hear patients, doctors, researchers and ethicists talk about the benefits and harms of using online technologies in health and healthcare.

If you have Sjogren's Syndrome you could attend the Annual Patient Conference. This year - the 10th Annual Conference - the line up of speakers was amazing. I have wanted to hear Dr Robert Fox speak for years. Now I'm looking forward to the On-line Webinar in 2017 on Oct 21. It's called Navigating an Immune System Gone Wild.

If you're starting to learn you'll find get reliable information. If you are already experienced you'll hear about the latest research. Involved patients have better outcomes!

Many pathways to knowledge