HERN Develops 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 American 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” – presented through multimedia clips using patients’ own voices about their 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 approach is maximum variation sampling, which assures the study seeks out and presents the broadest possible range of patient experiences and that it avoids inaccurately showcasing extraordinary stories or inspiring anecdotes. We also work hard to ensure that the resource is accessible to and relatable for a wide range of audiences and individuals. A summary of the methodology we will use for this study can be seen here.
Audiences for the Web-based Module: Target audiences for the completed module include: patients wanting to hear first-hand accounts about experiences with each health condition; to the family and friends of such patients; to caretakers of this patient population; to medical educators; to clinicians; to other researchers; and to policy-makers.