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.

Engaged Patients: What Good Are They?

It's important for the voice of the patient to be included at all levels of health care. Ultimately the money for the health system, including hospitals, pharma and insurance companies comes from patients. But we can't all just jump in and say we want to sit on boards and committees when we know very little about the issues that will be discussed.

Everyone knows that feeling of saying the wrong thing and losing credibility in the blink of an eye. As patients we may become experts on our own or a family member's disease, but that does not automatically give us insight into the way the system works and how it all fits together. That's one reason that patients need support and information to help with learning what they need to know to participate.

With the meaningful inclusion of patients as members of teams making decisions about healthcare the system will improve. Here's a quote from the Canadian Foundation For Healthcare Improvement. (CFHI) 

 ..."co-designing improvements with patients and families leads to new insights and better results than providers and leaders working on their own.

There is recognition of this fact in the efforts we see governments making to include patients on research teams, on advisory board work groups and on hospital advisory committees. Notable government funded groups are SPOR in Canada, PCORI in the US, and Invo in the UK, all hoping to see patient involvement as "The Blockbuster Drug of the Century."

Imagine how powerful a force a blockbuster like the engaged patient could be for governments that are trying to lower health care costs. That might be what is behind SPOR and PCORI.

The question on everyone's mind now is how do we find or produce these blockbuster engaged patients; how do we inspire more patients to take this amount of interest in their health, in research and in the health care system? 

I can tell you from experience that is not easy to go from being a naive and trusting patient who assumes the doctor knows best, to being well educated about my own health issues and being able to discuss my own health and the health system confidently. It's a lot of work, but of course, it's your life hanging in the balance, so you do it.

In Canada I have heard that routes to engagement for patients are being discussed. There's a lot of interest in what works and what doesn't. It's unfortunate they can't just hatch us. 

When I was first diagnosed I had two children, major fatigue and pain, and no time to try going through journals in the Central Library. Now it's easy to access much of the same information as your doctor sees just by searching on your computer. The major issue is choosing trusted sources of information. One thing to remember is that any site with something for sale is not unbiased.

Starting with government health sites, hospitals and disease charities is usually a good way to start to learn more. Another way to learn and gain confidence is through conferences and online webinars where you can get accustomed to hearing the language.

Our health care system could do a lot more to improve health literacy. In my wilder dreams I imagine courses that people can access in many different ways, depending on their language and literacy levels. You'd start with multiple choice, a lot like the game "Free Rice". The level of difficulty would keep increasing as you learned more.

      Not free rice

With the ability to make complex information into a game I am sure that with a concerted effort we could have the basics of anatomy and health terminology online fairly fast. Med students already have the bare bones of learning systems so we are not going to have to start from scratch.

Even educational games can be addictive

Of course another issue is access to the internet, with a recent study saying that 15% of people have no access. There's another issue to work on - social determinants of health already means that many people already have a disadvantage.

It is very satisfying to learn a new area and I admire people who follow this guideline to shared knowledge. "Give away everything you know, and more will come back to you" They have been a big help on this learning journey.

What do you want researchers to find out for you?

I've heard a lot of talk this past year about patients being more involved in research and in decision making. People in high places are talking about including the patient voice, from Ontario's Health Minister Eric Hoskins on Thursday at Health Quality Transformation 2014, to the Canadian Foundation for Healthcare Improvement (CFHI).

Minister Eric Hoskins said the first priority is to create and grow a patient centered health system. CFHI (Canadian Foundation for Health Improvement) says they are "Putting Patients at the Centre of Care" and they are behind the Strategy for Patient-Oriented Research (SPOR) which has big research projects coming up. These indicators sound as though the patient rallying cry of "Nothing about me without me" has been heard.

This does not guarantee success - there are many forces that want to see their own vision of participatory medicine, some because of profit, some who like the status quo, and others who resist change.

I was involved in a tweet chat this weekend with The Arthritis Research Centre and their Patient Advisory Board. This organization and their researchers have found ways to include patients and their views throughout the research process. ROAR stands for Reaching Out with Arthritis Research.

The event featured researchers speaking about their new projects to an audience that included anyone who wanted to listen to the live webinar or be in the in-person audience. That's a big change from the usual way we hear about and use research in our own lives.

They want to know what the audience wants to see and hear at the next eROAR event. So I take that to be an open question. Let them know what you want to hear about.

Let them hear what you want to see studied.

They'll have to use those ideas to get grants to do the research so it may be a long shot but I'm betting you all have at least two questions that you want answered.

What questions do you have that you think are being missed and neglected in your health area?
Do you ever look at research papers and wonder who on earth would have picked ____ as a research topic? I have been saving some doozies that I just won't post and let them see the light of day.

I'll forward all responses from comments to the Arthritis Research Centre, or you can send them direct at their website. It doesn't matter what country you're in. You know researchers - they all share. Your ideas won't go to waste.

ARC researchers, bloggers, and Arthritis Society representative

If you are interested in a definition of Patient Centered Healthcare I have linked to a paper by Donald Berwick that has a good discussion of the concept.