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2015 HSR&D/QUERI National Conference Abstract

3196 — The feasibility and effectiveness of creating a library of patient narratives to inform patient-centered research and practice in the VA

Cottrell EK, Portland VA; Ash J, Oregon Health & Science University; Saxton L, Oregon Health & Science University; Helfand M, Portland VA;

As the VA strives to become a leader in patient-centered care, VA-based researchers and clinicians will increasingly want and need access to the voice of Veterans as well as models for how to effectively integrate this information into research. We conducted a pilot project to: 1) assess the feasibility of creating a library of patient narratives of Veteran experiences with social reintegration after traumatic brain injury (TBI); 2) identify ways to facilitate the use of patient narratives in VA health services research.

We interviewed 15 researchers to assess the need and feasibility of creating a library of patient narratives. We conducted videotaped interviews with 10 Veterans with TBI. Two members of our research team coded interviews for themes and sub-themes; disagreements were resolved through consensus.

Researchers thought a library of patient narratives would be useful at various points in the research process (e.g. research design, recruitment, analysis and interpretation, dissemination). Researchers were most interested in patients' goals and values, the gaps in their care, the biggest challenges they face, and where shared decision-making and communication could help most. There was strong support for making the interviews available in a variety of formats, including raw transcripts or audio / video files as well as distilled themes and snippets of stories. We developed two methods for displaying the narratives to researchers: 1) transcripts indexed by key words, and 2) written summaries of overarching themes from the interviews, illustrated with text from transcripts and/or audio and video clips, using a methodology modeled after a UK initiative called the Database of Individual Patient Experiences (DIPEx).

Allowing narratives to inform multiple studies and be used for multiple purposes is more efficient than obtaining patient input de novo for every new research study. A library of narratives would permit researchers to access patient input at various points in the research process, increase efficiencies, and reduce barriers to conducting patient-centered research.

If created and sustained properly, a library of narratives would provide rich detail on health experiences to inform patient-centered research, and could be a valuable resource for medical education, health system redesign, and guideline development.