(This article is part of the capstone project for an online course in Stanford University MedicineX on Partnering with the Public and Patients in Medical Research. Published with permission.)
RT @trishgreenhalgh: Doctor: Don’t confuse your Google search with my 6y at medical school. Patient: Don’t confuse the 1-hour lecture you had on my condition with my 20 years of living with it.1
In this simple tweet I believe Trish Greenhalgh has perfectly summarized the value proposition of involving patients in the medical research process. More specifically, “patients can move past the challenges of misunderstood roles and mismatched priorities to make practical contributions in a successful (research) partnership” (Chu and Price 2019).2
There are three elements of particular note to understanding the value of patient/researcher partnerships, more specifically summarized as:
Healthcare is not like a widget;
There is a disparity between the theoretical and practical; and
Insight/innovation comes from all corners.
Dr. Larry Chu suggests “healthcare is not a product that can be manufactured by our healthcare system” (Chu 2019).3 Each person’s health is individual and rarely follows a theoretical cookie cutter category. Effective healthcare research requires understanding the need for a more realistic patient-centered perspective.
As a work example, as part of our implementation process of automating assessment workflows, we require clinician clients to facilitate focus groups with patients; in many cases having never done so before. And in those many cases, the clinicians are surprised that patients do not respond “as they should”, resulting in outcomes very different from those expected.
“Patients and clinicians bring real world problems and priorities for end users to the table while researchers bring us medical research methods” (Price 2019).4 Medical/scientific research generally looks at an issue with a general perspective, “washing” the data for estimating population, utilizing statistical methods to answer a hypothesis.
Conversely, patients only see what they see, which is their personal experience with their individual issue. Successful research cannot operate in any such silos, and thereby needs to incorporate both the scientific method and patient insight.
As noted by Melissa Hicks “…one of the biggest roadblocks to involving patients as partners in medical research is a systemic issue within the entire healthcare system. And that’s communication” (Hicks 2019).5
It’s not only important to recognize the value of a patient/researcher partnership, it’s equally important that researchers are provided the proper tools to incorporate it. This means educating researchers how to communicate with patients with elements of trust, respect and understanding.
From my work example above, patient focus groups always elicited skeptical looks from clinician clients and their patients. BUT when they see the results (and the initial results are always a surprise) they then embrace the partnership wanting to better involve the patient, look for other research opportunities, insights on how better to reach them and how to work together.
Dr. Amy Price has described this patient/researcher partnership co-production value as where “one adjustment can turn … a failure into a victory” (Price 2019).6 By enhancing the medical research processes from being two dimensional to multi-dimensional, research can then be viewed from many perspectives such that, what in one way may look like a problem, from another, a solution will make itself visible.
The patient/clinician co-production approach provides for solutions, insights and outcomes that are more directed, more practical, more effective and more humanistic.
1 Trish Greenhalgh, Twitter (March 25, 2019)
2 Chu, L. and Price, A. Partnering with Patients and the Public in Medical Research, Medicine X Stanford University School of Medicine (2019)
3 Chu, L. Partnering with Patients and the Public in Medical Research, Medicine X Stanford University School of Medicine (2019)
4 Price, A. Partnering with Patients and the Public in Medical Research, Medicine X Stanford University School of Medicine (2019)
5 Hicks, M. Partnering with Patients and the Public in Medical Research, Medicine X Stanford University School of Medicine (2019)
6 Price, A. Partnering with Patients and the Public in Medical Research, Medicine X Stanford University School of Medicine (2019)