Including patients in advisory boards in research studies is an important approach for increasing the relevance of research and bridging the gap between research and healthcare. Strategies for recruiting patients to advisory boards include patient panels, groups, or boards that are active throughout all stages of research [1].
In our institution, we are very interested in including people with Parkinson’s or their loved ones in different stages of our studies to get their input, feedback, and mostly make sure we do patient-centered research. We would greatly benefit from hearing your experience.
In this post, I would like to bring @DCoP_Innovators attention and ask you, do you have patients, care partners or families involved in advisory boards (or elsewhere besides as participants of the study) in your current research projects? At what stages? How do you recruit them and what is the extent of their responsibilities?
@paularp my experience with Patient advisory board has been in connection with my work in our Foundation here in Ghana.
The Anidaso Parkinson’s Disease Foundation has research, , patient advocacy, patient support and training as its focus so the Patient Advisory board have a say in the direction that we go in these areas.
In terms of clinical research in particular ,we have not fully utilized them and I believe that should be looked at in future if we are to sustain patient participation and engagement in trials and research.
One success we have achieved with the Board was when we worked with Parkinson’s Africa and IPDGC-Africa on a health literacy drive to produce a booklet culturally relevant for the African and simple enough for patients to understand the disease. The Head of the Patient Advisory Board worked with them to ensure content was relevant ,simple and covered what mattered to patients.
Hi! Thanks for this important post and I wanted to add my input. In the US, we have a funding program called PCORI (Patient Centered Outcomes Research Institute). This funding mechanism really focuses on patient involvement in study design and research as a whole, so patients are involved at all stages, and they are typically recruited directly from clinic, but also through PD advocacy organizations. If you want to read about specific projects, here is one that focuses specifically on PD:
@Vidash , is this booklet you mention available somewhere online?
At MJFF, we will often include patients in research projects and have the Patient Council to formally advise MJFF on both research and other PD-related matters [link]. On a broader scale, we also often have people with PD in study steering committees; more narrowly, I’ve worked with patients in our registry advisory committees and on things like developing one-time surveys for Fox Insight (i.e., Women’s Health and Home Life surveys, among others, were developed by several researchers/community members with or impacted by PD).
More practically, to your question Paula, I think people with PD or community member involvement varies based on their interest and desired level of involvement. When they are involved I think would vary, too, but my strong preference is to have them at the table as soon as feasible – I do not have PD nor do any of my family members, so despite best intentions, I will never have the same insight as them into their lived experience. MJFF has a large network of people who are interested in being involved and if you’re interested I wonder if perhaps we could help find folks with PD or their loved ones to join in your work if you are having trouble recruiting/finding them .
In my experience so far with studies that involved participatory methods such as community maps and photovoice, I have learned to view patients as co-researchers rather than just participants. This helps a lot with power dynamics and removes barriers.
Again, patients who live the disease conditions are often overlooked as important sources of information about the disease. In some cases, clinicians do not understand their health seeking behaviors, which may be due to the patients understanding of the disease and its etiology. Patients are somewhat experts of the conditions they live with and seeking their inputs makes way for more culturally sensitive and appropriate interventions. I have come across patients accounts that are not in the textbooks.
So, in addition to inclusion in advisory boards, they should be seen as co-researchers and experts in the conditions they live with.
I agree they should be seen as co-researchers/collaborators! I follow some Parkinson’s patients on X (formerly Twitter) and it is interesting to see what they post. Scientists post things about PD and often times patients voice frustrations with how the research is presented and what their own priorities are. Patients also post their lived experiences which are also unique in how they are presented online vs. in clinic.
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