“Those boxes do not hold me”: Using Narrative Health Experiences Research to Learn from Patients and Care Partners Beyond Surveys

Stories are fundamental to how we understand individual beliefs and experiences, as well as collective mindsets and institutional practices. Volunteered narratives are abundant, especially on the interweb. We in the health experiences research community, however, are challenged to develop effective, equitable approaches to moving beyond surveys by hearing and responding to not just dominant voices, but also those whom research has historically ignored, silenced, or objectified. In this commentary, we describe one such approach: the Database of Individual Patient Experiences (DIPEx) methodology as adapted by the Health Experiences Research Network (HERN) for use in the U.S. context since 2015. We summarize HERN’s approach to moving the patient experience paradigm outside the boxes characteristic of survey design, and our aspirations for the future.