The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC) have developed a collaborative research model for use by patients and patient organizations, funders, research institutions and other traditional biomedical research teams. The project was funded by a grant from the Patient-Centered Outcomes Research Institute (PCORI).
The model is represented by a set of scorecards which focus on:
- Patient/Partner Governance
- Integration into Research Process
- Patient Burden
- Research Organization Readiness
During Thursday’s webinar, Hannah Wei and Gina Assaf of PLRC will focus on the scorecards related to Research Partner Readiness and Integration into the Research Process, but if you have overall questions please feel free to ask them.
As Hannah wrote on Twitter:
We @patientled have developed a series of scorecards to evaluate patient involvement in research. We hope to share our best practices to help teams and research orgs raise the bar for effective patient engagement.
Why scorecards? As patients, it’s important to contribute meaningfully and know a baseline of acceptable engagement. It’s important for research teams to plan for equitable and effective patient engagement. We created this tool to help bridge the dialogue and raise standards.
So much on pt engagement in research has been written from an institution or consultant’s POV. We wanted a tool that’s practical, agile and reflects @patientled’s vision. I hope it can help allies at institutions advocate for change from the inside. #NothingAboutUsWithoutUs
I was an advisor to the project and will act as an ombudsman during the first webinar on Thursday, January 19. We would love for people to download the scorecards (here’s a PDF) and, if you have time, share some of your questions in advance — here in the comments, or find me on Twitter/LinkedIn. There will also be time for questions during the webinar.
Here’s a link to information about the webinar series, including links to the scorecards AND registration (which is free and open to the public, by the way).
Featured image: “In Dark Times Shine Your Light Brighter” by Ted Eytan on Flickr.
The following question was posted by Darshan Kulkarni on the LinkedIn version of this article:
“Can I start with a basic one? What does it mean? I have seen patient centric, and patient focused. What does patient led mean?”
Here’s what I wrote (within the character limit of LinkedIn’s comment box):
Thank you and I love this question. I’ll highlight it for our speakers this afternoon and I invite anyone reading this to comment if they would like to.
Personally, I can say that as an advisor to the team that created the scorecards, I *thought* I was pretty knowledgeable about the differences among the terms (and the practices underlying) patient-led, patient-centric, patient engagement, etc. But the readings & insights shared by other advisors and from within the PLRC deepened and expanded my understanding.
At its core, I’d say that there are two ideas embedded in the term patient-led. One is about power – look to the disability community’s Nothing About Us Without Us, for example. The other is about effectiveness of the research being conducted. It is a competitive advantage to involve people experiencing the symptoms/living with the challenges you are trying to solve at every stage of the research. And the best way (the only way?) to do that is to create a patient-led research team. The PLRC proved this over the last two years.
Again, I invite anyone reading this to add their thoughts AND I look forward to hearing what the speakers today have to say about this question. Thanks again for asking it!
-end of LinkedIn reply-
There is so much more to say of course! But I’ll pause and link to a few of my favorite resources and articles related to this topic.
See for example:
Sherry Arnstein, “A ladder of citizen participation.” Journal of the American Planning Association 35, no. 4, (1969) 216–224. (Check out a summary of it here.)
“Building Effective Multi-Stakeholder Research Teams,” Patient-Centered Outcomes Research Institute, https://research-teams.pcori.org
“You Need to Ask Patients: A Step-by-step Guide to Creating a Mindset of Inclusion,” Savvy Cooperative e-book
“A Research Partnership Maturity Model for Patient Organizations,” FasterCures, (2021), https://milkeninstitute.org/article/RPMM-companion-guide.
Comments are open, both here and on LinkedIn.
Geoff Revill wrote on LinkedIn (on a post by Bertalan Meskó):
“Useful tool, luckily uk nhs related research already sets these stds and even has public orgs set up for patient led research support”
My reply:
Yes! Paul Wicks shared this resource with me and I’d love to find more NHS standards documentation if you can share it:
Briefing notes for researchers – public involvement in NHS, health and social care research
https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371
Geoff replied:
“think you have the main touch point. In the UK orgs seeking to pursue NIHR can call on an org called RDS Research Developent Service, they key there is that they tend to have patient groups ready to go for research and all the proper contracts and funding model etc”
I wrote:
Thank you! I found this site: https://www.nihr.ac.uk/explore-nihr/support/research-design-service.htm
As an aside, I’ve been talking with a founder of a startup here in the U.S. about building a patient-led company that will deliver both services and fund research for a certain set of conditions and I asked if they had considered starting it in the UK because of how advanced your structures are for this type of work. It’s not going to change their path but it sparked a good conversation.
In the US, I like to recommend Savvy Cooperative to orgs/companies that want to involve patients, survivors, caregivers, and others with lived experience in the design of a study. Would love to point to more examples if people reading this thread know about them.
-end-
I will keep adding questions and resources to this thread. Please join in if you have a comment, question, compliment, or counter-argument.
> download the slides (here’s a PDF)
I believe that link goes to the scorecards, not slides. Am I missing something?
This whole project is so powerful! I don’t know at which point you got involved as an advisor but if I had an award to bestow, this project would get it. Here’s a snip from what I said to some friends about it:
>I think it’s the best thing PCORI’s ever done – it’s actually getting at *who has power.*
> I was thrilled that they started by citing Arnstein’s Ladder of
> Citizen Participation, which I’ve been touting for years.
> This is the 8-level scale that says, in its middle levels,
> when the power-holders merely *inform citizens of what they’re doing,*
> or merely *CONSULT citizens before deciding,* it’s tokenism.
> It’s not enough… from the disempowered citizen’s POV.
My enthusiastic kudos, too, to Hannah and Gina and all PLRC for the deep, rich articulation of their values in each of the scales. I’ve worked on similar things, and they did just a super job. Such a contribution to the field!
Will it be published in a journal so others can cite it?
Thanks!!
When I wrote “slides” in the post I meant the scorecard tool. The presentation slides are not yet available online. As for the video, I believe it will appear on the same page as the other information. CMSS is looking into how to add closed captioning, if they can.
My role has been as an ambassador and advisor. When the CMSS began organizing webinars about the role of data in pandemic response back in 2020 I proposed to Helen Burstin that we create a patient-led webinar. She enthusiastically agreed and I invited Gina Assaf, Hannah Davis, Gary Wolf, and Emily Sirotich to present their work. That’s what sparked CMSS to ask PLRC if they’d be interested in collaborating on a PCORI project to help more researchers and data scientists to understand the patient-led process.
After they began work, I joined the advisory committee for the project but all the credit for the brilliance of the scorecard tool belongs to the PLRC team and CMSS.
Thanks for the additional background. (At least you know I’m one of those who actually click things. :-))
I’ll repeat that I hope this will be published, in a journal. I’ve learned the hard way that a lot of thoughts may get praise in public but they simply *do not exist* in academia unless there’s a doi: attached to them.
These scorecards are a seriously important creation.
This is a timely topic Susannah! I am serving on the planning committee of The National Academies for a workshop on long tail diseases, including long COVID, chronic Lyme, and ME/CFS which is planning a session on patient-driven research. The conference “Toward a Common Research Agenda in Infection – Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors” will be held June 29 and 30 in Washington DC—please come if you can and attend virtually if you cannot. Enrollment details https://www.nationalacademies.org/event/06-29-2023/toward-a-common-research-agenda-in-infection-associated-chronic-illnesses-a-workshop-to-examine-common-overlapping-clinical-and-biological-factors. I think this will be the first time a panel on patient-driven long tail disease research has been constructed. It is interested that many of those proposed to be on the panel, including myself, have experience with PCORI.
I was on the inaugural patient engagement panel of PCORI that formulated the patient engagement rubric and served on the next session that developed the patient compensation framework and authored a college text book chapter on patient engagement (yes, it included the Arnstein ladder!) edited by the NIH. Sue Sheridan (@sue_e_sheridan) was the spark at PCORI that galvanized the shift to patient powered research—so by the way was Harlan Krumholz at Yale (@hmkyale).
I also chaired the patient counsel for PCORI which drafted a data privacy, consent and usage policy that was unfortunately not implemented. MyLymeData was initially included among the PCORnet patient registries, but pulled out when PCORI’s data use policies did not align with our patient community interest. We now act as a trusted data steward for the MyLymeData patient registry ensuring that the data in the registry is used solely for the benefit patients. I am so grateful to @bravebosom and @belikelight for leading the charge on patient privacy—which is such an important and overlooked issue for patient communities.
I sat on the Executive Committee and the Steering Committee of PCORnet, PCORI’s big data project. That experience taught me about patient-led registries and research engines as PCORnet had roughly 23 patient registries. The MyLymeData patient registry has now grown to over 17,000 and we have published 5 peer reviewed publication based on data from the registry and are working on 2 more. All of our research is conducted in partnership with researchers. This is why I am so enthusiastic to see the efforts in long COVID by @patientled, @ahandvanish, @LisaAMcCorkel, in the patient-led research space. We need more of these efforts. As Rob Califf, head of the FDA (who also sat on the Executive Committee of PCORnet) likes to say “randomized trials are great, but they cost too much, take too long, and don’t apply to most people”.
We need to start thinking about what type of research is fit for the purpose at hand. For example, should post exertional malaise, which may be harmful to some patients with long COVID, be studied by a randomized controlled trials or can we get at that same information more quickly, less expensively, and more safely through patient surveys conducted by patient led research?
I always enjoy your these deeply informed threads Susannah and the conversation they spark in comments.
Lorraine
Thank you, Lorraine! I will check back on the June meeting to see how the agenda is built out. I’m very glad to know that you are involved.
Boy, year after year your posts amaze with the outstanding conversations they start and the stellar resources people contribute. You are such a thoughts whisperer!
> they tend to have patient groups ready to go for research
> and all the proper contracts and funding model etc
Wow. I’m gonna go ask Savvy Coop’s Jen if they’ve seen this