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 al...
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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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.
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