title: Patient narratives representing patient voices to inform research: a pilot qualitative study.
abstract: We are investigating the feasibility and effectiveness of establishing a library of patient narratives to inform patient-centered research in the U.S. Veterans Affairs organization. Using qualitative methods, we conducted a needs assessment of 15 researchers and then interviewed and videotaped 11 veterans with traumatic brain injury or diabetes. We developed a method for displaying the narratives to researchers modeled after a UK initiative called DIPEx and then performed preliminary usability testing. We found that it is not only feasible to provide researchers with patient narratives that could help guide their research, but that similar narratives might be useful to practitioners, health system decision makers, and other patients as well.
authors: Oregon Health & Science University, Portland, OR, USA.
authors: Joan S
authors: JS
authors: Ash
authors: Oregon Health & Science University, Portland, OR, USA.
authors: Erika
authors: E
authors: Cottrell
authors: Oregon Health & Science University, Portland, OR, USA.
authors: Lauren
authors: L
authors: Saxton
authors: Oregon Health & Science University, Portland, OR, USA.
authors: Lucas
authors: L
authors: Newman
authors: Oregon Health & Science University, Portland, OR, USA.
authors: Eric
authors: E
authors: Gebhardt
authors: Oregon Health & Science University, Portland, OR, USA.
authors: Mark
authors: M
authors: Helfand
mesh_terms: D001294:Attitude to Health; D016208:Databases, Factual; D005240:Feasibility Studies; D006302:Health Services Research / Q000379:methods* / Q000458:organization & administration; D033262:Narration; D009922:Oregon; D010358:Patient Participation / Q000379:methods* / Q000523:psychology; D010865:Pilot Projects; D014728:Veterans / Q000523:psychology / Q000706:statistics & numerical data*