By Kyle Bozentko

At the Jefferson Center, we know everyday people (as opposed to advocates, policy experts, or politicos) have the wisdom and capacity to make informed, credible decisions about complex public issues. This assertion may induce heartburn in those who have dedicated considerable time and energy to master the technicalities and nuances of their specialty. Yet we maintain (and the research backs this up), given the time and resources to study issues and discuss policy with one another, non-experts can develop credible, defensible solutions to our toughest public challenges.

Building from this assumption, we teamed with Dr. Tina Nabatchi, Associate Professor at the Maxwell School of Citizenship and Public Affairs at Syracuse University, and the Society to Improve Diagnosis in Medicine (SIDM) to focus on one of the most complicated and costly challenges in the realm of patient safety: diagnostic error.

With support from the Agency for Healthcare Research and Quality, our team is in the middle of a two year research project exploring (a) the extent to which patient deliberation can generate practical, patient-centered strategies for improving diagnostic quality; (b) the effects of deliberation on patient activation measures, health literacy, and knowledge about the health system; and (c) the responses of doctors and health professionals to the recommendations of patients.

To begin, we convened a group of 18 healthcare consumers residing in Onondaga County, New York in a six-day deliberative event, Clearing the Error, utilizing our Citizens Jury model of deliberation. Participants ─ randomly selected and stratified to reflect regional diversity in socioeconomic, demographic, and patient experience characteristics ─ came together to learn about diagnostic error from more than a dozen leading experts; to deliberate together; and to recommend patient-centered strategies to improve diagnostic quality in clinical and ambulatory care settings.

Thanks in large part to the considerable awareness and coalition building efforts of SIDM, diagnostic error is a hot topic in patient safety. Serendipitously, between the first and second weekends of our deliberative event, the Institute of Medicine released its groundbreaking report (“Improving Diagnosis in Medicine”) dedicated to identifying and alleviating missed and misdiagnosis in medicine. The report begins with the acknowledgement that “most people will experience at least one diagnostic error in their lifetime, sometimes with devastating consequences.”

This report, the culmination of nearly two years of research and collaboration by a blue ribbon committee of health researchers, medical experts, and health professionals, provides a survey of the causes and consequences of diagnostic error. The report also offers up a wide range of goals and recommendations for improving diagnostic quality from the provider, system, administrative/payee, and patient perspectives. Our group of consumers focused exclusively on the development of strategies that patients themselves would be willing and able to take in order to strengthen the doctor-patient relationship and improve diagnostic quality.

Clearing the Error participants focused their efforts on three primary components of developing strategies and interventions:

  1. Recommendations for patient action.
  2. Obstacles patients might face from providers and/or health system protocols, regulations, and other institutional structures when taking action.
  3. Strategies that could be adopted to overcome those obstacles.

It would be unrealistic to claim Clearing the Error participants developed in six days a more comprehensive plan for improving diagnostic quality than the IOM Committee did in two years. However, the quality and specificity of patient recommendations complement those in the IOM report, offering tangible strategies that can be implemented today to improve diagnostic quality.

We can tap the wisdom and resourcefulness of patients and funnel it productively to overcome the challenges we face. As the Minnesota Alliance for Patient Safety states, a patient is their “own best medicine.” It turns out, a patient isn’t a bad policy wonk, either.

Bozentko is the executive director of Jefferson Center (www.Jefferson-Center.org), a nonpartisan civic engagement and public policy organization founded in 1974. Its mission is to strengthen democracy by advancing informed, citizen-led solutions to challenging public issues. Jefferson Center advocates for the American public, not for specific policies or positions.