Leveraging Health Experiences Research to Enhance Veteran Engagement
Erika Cottrell, PhD
Rachel Grob, PhD, MA
Mark Helfand, MD, MS, MPH
Nancy Pandhi, MD, PhD
Mark Schlesinger, PhD
Seminar date: 7/13/2016
Description: Engaging and understanding the perspectives of patients and their caregivers is a critical component of clinical and health services research. However, few approaches to patient engagement or incorporation of patient perspectives in research are evidence-based and researchers frequently find it difficult to incorporate patient perspectives, values and preferences into projects in a meaningful way. Developed in 2001 by the Oxford University Health Experience Research Group (HERG), the Database of Individual Patient Experiences (DIPEx) methodology utilizes rigorous qualitative research methods to collect and analyze interviews about patient experiences with particular health conditions. A unique feature and key strength of DIPEx is the commitment to making information about health experiences available to a wide audience. Interviews are transcribed and analyzed by qualitative researchers using a grounded theory approach. In addition to publishing findings in the peer-reviewed literature, researchers produce web modules that include lay language summaries describing the range of patient experiences in a balanced and accessible format and raw interview transcripts are stored in a data warehouse and available for secondary analysis, upon request. Inspired by the success of this approach, nine countries have launched their own DIPEx chapters and joined with the UK to form DIPEx International. The US DIPEx chapter, referred to as the Health Experiences Research Network (HERN), was launched in 2014 by a steering group of researchers and clinicians from the University of Wisconsin-Madison, Johns Hopkins, Yale, and Oregon Health & Science University.
In this presentation, members of the HERN steering committee will provide an overview of the DIPEx approach, with specific focus on the value of this approach for enhancing patient engagement. We will also discuss first two DIPEx modules underway in the US – a module on young adult experiences of depression (led by researchers at UW-Madison) and module on Veteran experiences with social reintegration after traumatic brain injury (led by researchers at the Portland VA and Oregon Health & Science University).
Intended audience: Researchers, clinicians, and administrators interested in the methods for understanding patient health experiences, enhancing patient engagement, and integrating patient voice into research.