The Stories Patients Tell: What Do We Need to Know?

Beth Toner
Leigh Anne Cappello
Lisa Gualtieri
Brooke Van Roekel


Patient engagement. Patient-centered. Patient empowerment. These phrases have become ubiquitous synonyms. Sadly, however, they have been co-opted by well-meaning (and some not-so-well-meaning) folks who use them to mean something that does not really put the patient at the center of care.

In this era of high-tech medicine and instantaneously available information, providers obtain information about patients, not from them – getting plenty of data, but almost never listening to their stories. These stories, however, provide valuable information about each patient’s life context – context that could truly provide the patient’s perspective, level the proverbial playing field between those who get and give care—and improve the health care experience for everyone.

Throughout the country, myriad efforts are underway to better capture the stories of patients struggling with illness and recovery. These undertakings have the potential to help us build a Culture of Health and improve the value our health care system provides.

The first step is giving people the opportunity to tell their stories. The next: Understanding how to truly listen to those stories, and then apply those insights to create meaningful change.

Over the course of the last year, the Robert Wood Johnson Foundation (RWJF) has had the opportunity—thanks to several of its grantees and staff—to spend some time listening to patient stories. The stories that have arisen out of their work have been eye-opening and inspiring. In this presentation, panelists will share what they’ve learned:

  • Leigh Anne Cappello, director of the Patient Experience Lab for the Business Innovation Factory, will share what her team learned from “The Power of Narrative: Contextualizing a Culture of Health Through Story,” a Participatory Design Studio that included physicians, nurses, researchers, educators, artists and patients. Together, this group created a “playbook” that we hope will serve as a national resource for both patients and practitioners to learn about, champion, and implement narrative as a natural part of health and health care.
  • Lisa Gualtieri, assistant professor in the Department of Public Health and Community Medicine at Tufts University School of Medicine, will highlight the findings from her research, “The Untapped Potential of Patient Activists.”  She will examine the answers to the three questions she set out to answer: 1) Who are patient activists? 2) What motivates them? 3) How do they use their experiences to help others?
  • Beth Toner, senior communications officer at RWJF, will present the results of a social media monitoring project designed to "listen" to patients who are active on all forms of social media, focusing on one or more chronic conditions as a sampling of the problems patients face.
Most importantly, however, the high point of this panel will be a listening session moderated by Brooke Van Roekel, RWJF’s direct of audience engagement marketing. This session will be a chance for ePatients in attendance at MedX to let us hear, in real time and in real life, what we need to know about what it’s like to be a patient today. How and where should the Robert Wood Johnson Foundation (and philanthropy in general) be listening to patients? How can it inform us as we all work together to build a Culture of Health?
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