An Innovative Methodology for Studying/Disseminating Patients’ Experiences. As use of web-based health information increases, the influence of patients’ experience has also grown rapidly. It can often be difficult, however, for users to identify authentic experiences and rigorous research on the web.
In response to this concern, researchers at four U.S. universities and the Veterans Administration have formed the Health Experiences Research Network (HERN) and brought an internationally-vetted method of rigorously collecting, analyzing, and presenting diverse health experiences to the United States. At the heart of this work is a commitment to marrying systematic qualitative research studies about patients’ health experiences with the development of public-facing, web-based resources.
Our initiative provides accessible, engaging, systematically-collected qualitative summaries, or “modules.” Through multimedia clips, modules convey insights as patients’ describe experiences with health and health care. Each module is set in the context of current clinical best practice and the evidence-base related to its specific illness or health condition. The collection of these modules is publicly accessible online at www.healthexperiencesusa.org.
A key strength of HERN’s research methodology is maximum variation sampling, which assures the study seeks out and presents the broadest possible range of patient experiences. At the same time, it avoids inaccurately showcasing extraordinary stories or inspiring anecdotes. We also work hard to ensure that the resource is accessible.
Intended audiences for the completed module:
- patients wanting to hear first-hand accounts about experiences with specific conditions
- families, friends, and caregivers of such patients;
- medical educators, clinicians, and researchers