Pathway of Patient Engagement

AiArthritis Voices 360 Full Episode 66

Air Date: October 3, 2021

This week join your patient co-hosts Tiffany Westrich-Robertson, Cheryl Koehn, and Maarten de Wit as they introduce us to the Pathway of Patient Engagement in Rheumatology Research. Tiffany is the founder and CEO of AiArthritis. Cheryl Koehn is the founder and President of Arthritis Consumer Experts - Canada’s largest patient organization. Maarten is the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology). 


Tiffany, Cheryl, and Maarten are all leaders of the ACTion Council - an organization dedicated to preserving the past and advancing the future in patient-involved rheumatology research. The ACTion Council consists of stakeholder groups from patient organizations, health charities, coalitions, non-pharmacologic researchers, government agencies/initiated programs, and industry. Between 60 – 75% of those invited to participate have engaged in research collaboration as patient stakeholders. 


Today’s episode is about the Pathway of Patient Engagement in Rheumatology Research, the first deliverable produced by the ACTion Council. The purpose of the initial Pathway is to trace the evolution of patient engagement in rheumatology research, including identifying historical milestones, novel “firsts”, and tools. Then, as patient involvement continues to popularize and branch off into different directions, new entries can be added. New entries will be collected and added in the second half of 2021, and the Pathway will be updated bi-annually.


Tune in to this episode to learn why the Pathway is important, how it can be helpful to you as an AiArthritis stakeholder, and how to avoid tokenism when you want to participate as a patient research partner in rheumatology research. 



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Show Notes:

Episode 66: The Pathway of Patient Engagement in Rheumatology Research
00:52 - Tiffany welcomes listeners.

01:20 - Tiffany is joined by fellow patient co-hosts Cheryl Koehn and Maarten de Wit

02:24 - Cheryl is a person living with Rheumatoid Arthritis and works for Arthritis Consumer Experts - Canada’s largest patient organization.

04:29 - Maarten is a person living with Psoriatic Arthritis and the Chairperson for the Study Group for Collaborative Research for  EULAR (European Alliance of Associations for Rheumatology).

07:40 - Today’s episode is about Patient Engagement in the Rheumatology research space and the Pathway of Patient Engagement in Rheumatology Research as developed by The ACTion Council.

08:44 - Tiffany explains the origin of the Pathway project.

10:36 - Cheryl explains how she originally became involved in research collaboration.

18:02 - In 2017, AiArthritis organized a roundtable of the people most involved globally in patient engagement in rheumatology research.

20:13 - The Pathway to Patient Engagement was created by a group of stakeholders that grew out of that roundtable meeting called The Action Council.

21:18 - The Action Council is a patient-led initiative, and 70% of the members are patients living with rheumatic disease.

23:10 - A patient research partner (a term coined by Maarten originally) is a patient who has an equal role on a research team, collaborating on an equal level with other researchers at every stage of the research.

25:41 - The goal of patient research partners is to make the research more patient-centered and more fitting of patients needs and beneficial to improving patients’ daily lives.

25:55 - Patient research partners should ideally be co-authors of the final research publication.

27:21 - Cheryl believes that incorporating patient research partners and having them co-author research publications is the “moral, ethical thing to do.”

27:39 - Living daily with arthritis requires a lot of skill that non-patient researchers do not possess. These skills are fundamental to good research.

29:28 - The patient engagement / patient researcher model must be strategic, scalable, and sustainable.

32:40 - One of the goals of the Pathway is to avoid Tokenism in research initiatives.

33:25 - Simply mandating patient involvement in research doesn’t work due to problems with tokenism.

34:21 - Creators took care to make the Pathway a user-friendly instrument.

35:03 - Mandating patient engagement in research (for funding) is necessary to get researchers to change their methodology, but it is incumbent on the patient community to safeguard against tokenism.

36:38 - One thing you can do to safeguard against tokenism is to refuse to cooperate with any research project trying to recruit patients at the last minute before a funding deadline.

37:35 - If you are offered a position on a research team that does not include co-authorship, refuse it.

37:51 - If you are not given a power title, you will not hold power in the project.

38:26 - The Pathway is a great place to learn if you are new to patient participation in research, but it is also a great place to find models for research if you are already a leader in patient research.

39:59 - Community-led research can be valid, published research even without major research organizations or funding sources involved.

41:24 - You can find the Pathway at  rheumactioncouncil.org or on social media @rheumcouncil.

43:43 - There are videos on the website that explain in detail what the tool is and how to use it.

47:04 - Any stakeholder can contribute to the Pathway.

48:16 - You can also find any of our previous podcast episodes at  aiarthritis.org/talkshow or on any podcast platform.

Your Co-Hosts & Guests: Who is at the table this episode?

Tiffany Westrich-Robertson

Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels. 


Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.


Maarten de Wit

Maarten de Wit (1961) PhD, has been active in rheumatology patient organisations at local, national and international level for more than 20 years, including the position of EULAR vice president representing People with Arthritis/Rheumatism in Europe (PARE; 2005-2009). He is Chair of the EULAR study group for collaborative research, member of the EULAR Research Committee and leading author of the EULAR online course for Patient Research Partners (PRP’s). 

He is co-author of more than 170 peer-reviewed manuscripts and an often invited speaker (over 100 symposia, conferences and other international events). He is a senior advisor for international research consortia, universities and several PhD students and post-docs in Europe, North America and Australia. 

In 2014 Maarten defended his doctoral thesis “Patient participation in rheumatology research. A four level responsive evaluation” at the University Medical Centre Amsterdam. The evaluation of 10 years of patient participation in OMERACT (Outcome Measures in Rheumatology) was an important part of his thesis. Maarten is member of the COMET patient advisory group PoPPIE and presented at the  COMET meetings in Bristol (2011), Amsterdam (2016 and 2018). 

Maarten has psoriatic arthritis since 1984 and is successfully treated with bDMARDs. 

Cheryl Koehn

Cheryl Koehn lives with rheumatoid arthritis and over her 31 years since diagnosis has become a national and international consumer-patient community leader, educator, research partner and published author. Ms. Koehn has dedicated her life to helping others living with arthritis. She is the Founder and President of Arthritis Consumer Experts, Canada’s first national, patient-led organization that provides science-based information and education programs in both official languages to its 50,000+ members. She served as Co-Chair of the Summit on Standards for Arthritis Prevention and Care, was a volunteer member of the management committee of Canada’s first federally funded arthritis research institute (the Canadian Arthritis Network), was a consumer-patient representative Board Member of the Arthritis Alliance of Canada and Arthritis Research Canada, and today, serves as the patient representative on the Canadian Institutes of Health Research Standing Committee on Ethics. Cheryl lives and works in Vancouver, is an avid road cyclist, ocean swimmer and woods walker with her faithful dog, Molly. To learn more, please visit www.jointhealth.org

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