A great deal of effort has gone to engaging patients and caregivers in the decisions being made about their treatment and care. There is also a growing interest in engaging patients and families in the organizational design and governance of hospitals, health care facilities, and other health care delivery systems. A wide range of tactics, tools, and methods have been developed to help patients and families actively participate as partners in these arenas, with more on the way. These many efforts are exciting and will have profound impacts on health care.
Yet, AIR’s conceptual model of patient and family engagement also encourages patient and family involvement in the formation of public policy. While patient and family engagement in the formation of public policy may look a bit different than it does in the clinician’s office or on the hospital Board, it is no less vital if we are to achieve patient-centered care.
Tactics, tools, and methods for engaging patients in this area have been more limited, and are often understudied. Policy has, for many years, relied heavily on public opinion polling, which collects “top of mind” responses that may reflect little understanding of the issue. Public deliberation is a different approach, where patients and family caregivers join other stakeholders in facilitated discussion forums where they are able to learn about an issue from multiple perspectives, share their own views, and weigh competing priorities and values. Public deliberation is designed to capture in-depth and informed perspectives on complex topics using three main components: (1) Educating participants about an issue, usually through neutral, objective written materials or conversations with experts; (2) Ensuring balance by considering all sides of an issue; and (3) Encouraging participants to keep broader societal concerns in mind along with their individual points of view.
While public deliberation has a long history in society, it’s use as a tool to engage patients and families in the process of creating public policy on health care is relatively new. There has been very little rigorous research to answer key questions about how effectively public deliberation can collect informed public input, especially from diverse populations, and what format these forums should use to yield the best results.
That gap in research was recently narrowed through the Community Forum project, the first large-scale randomized controlled trial of alternative methods of public deliberation, sponsored by the Agency for Healthcare Research and Quality (AHRQ) to investigate whether public deliberation was an effective means of informing the public and collecting informed input on healthcare issues. The article can be found in the May 2015 edition of Social Science & Medicine.
This study showed that public deliberation is an effective way for policymakers to both engage citizens in complex health care issues and ‘see around the corners’ to better anticipate how public attitudes might evolve as people learn more about issues and discuss them.
The research included seventy-six public deliberation groups (1,338 people) assigned to one of four deliberative methods or to a reading-materials-only control group. We found that compared to the control group, public deliberation increased participants’ knowledge of medical evidence and comparative effectiveness research. This led to a shift in their attitudes about the importance of medical evidence in treatment decisions. As a result, policymakers were provided truly “informed” public input on a difficult and challenging policy subject.
Another important discovery, detailed in a second article published in the February, 2015issue of the Journal of Healthcare for the Poor and Underserved, was that public deliberation was as effective for minority populations and those with limited education, which suggests that the tool may be an effective way to engage patients and ca4regivers from all races and walks of life.
Given that public policies affect the choices and experiences of patients, family caregivers, and everyone else involved in providing or receiving health care, finding good tools that help provide a voice to these stakeholders opens new doors for public engagement in policymaking. Public deliberation shows true promise, regardless of the format that is used, to give patients and families a chance to be partners in the process.
Coretta Mallery, PhD, is a Senior Researcher at AIR and an expert with the Center for Patient and Consumer Engagement.