By Dr Shreya Kangovi
Patients of low socioeconomic status (SES) have little input into the design of healthcare delivery. The lack of patient engagement in the design process results in models of care that, at best, are not working for the patients at highest risk. At worst, they are perpetuating disparities. Online portals, same-day scheduling and written discharge summaries are just a few examples of delivery innovations that are intended to improve outcomes; yet each of these solutions may create access barriers for low-SES patients.
Academics, clinicians and policymakers agree that patients and caregivers should be more actively engaged in the process of healthcare innovation. There is less clarity on the methods required to achieve this goal. It is challenging to get high-risk patients in the room during the planning stages of an intervention or practice redesign. It is even harder to empower these patients to participate in conversations dominated by clinicians or policymakers.
A common solution has been to include a patient representative on planning committees or to create a patient advisory board. This practice builds upon the principles of community based participatory research, and is a huge step in the right direction. However, it has its limitations. Patients selected for this type of involvement may not represent the patients at highest risk: the uninsured taxi cab driver, the homeless diabetic patient, the undocumented immigrant. These patients may require more active outreach and engagement in order to voice their unique preferences and constraints.
Qualitative participatory action research (PAR) may be a useful strategy for operationalizing the involvement of high-risk patients in healthcare redesign. The process begins with an innovation designer (e.g. academic or policymaker) conducting in-depth, open-ended conversations with end users (e.g. high-risk patients) who are most affected by a problem (e.g. poor outcomes during the post-hospital transition). The use of qualitative methods such as in-depth interviewing and purposeful sampling allows the designer to talk with marginalized patients one-on-one and listen to their detailed accounts. The designer can learn what patients think are the root causes of the problem, and elicit their ideas for solutions.
The designer can then go about a step-by-step process of user-centered design, solving the root causes of the problem as experienced by the patient. Ultimately, this process leads to interventions that are pre-approved by the patients they are intended to benefit. Hopefully, it also results in fewer interventions that miss the mark, and improved outcomes for the patients at greatest risk.
You can find the related Healthcare article, “The use of participatory action research to design a patient-centered community health worker care transitions intervention”, here.