Patient Stories Can Make a Difference in Patient-Centered Research Design

Amid increasing interest in improving the patient-centeredness of research, new forms of engagement are emerging that enable researchers to get input from community members on research goals, methods, and implementation. This input often includes stories, which are useful for understanding lived exp...

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Bibliographic Details
Main Authors: Laurie Lovett Novak PhD, MHSA, Sheba George PhD, Kenneth A Wallston PhD, Yvonne A Joosten MPH, Tiffany L Israel MSSW, Christopher L Simpson MA, Yolanda Vaughn MS, Neely A Williams MDiv, Sarah Stallings PhD, Jabari S Ichimura, Consuelo H Wilkins MS, MSCI
Format: Article
Language:English
Published: SAGE Publishing 2020-12-01
Series:Journal of Patient Experience
Online Access:https://doi.org/10.1177/2374373520958340
Description
Summary:Amid increasing interest in improving the patient-centeredness of research, new forms of engagement are emerging that enable researchers to get input from community members on research goals, methods, and implementation. This input often includes stories, which are useful for understanding lived experiences of illness and encounters with health care organizations, and for locating these experiences within larger meta-narratives of specific communities. We analyzed the stories in transcripts of 13 Community Engagement Studios and identified 4 major functions that the stories served in the sessions. Major functions included: (1) establishing mutual understanding, (2) adding expansion and depth, (3) characterizing abstract concepts, and (4) providing context for experience, with the latter being the most frequent. We assert that stories can serve to better communicate the complex contexts of patient experiences, helping to align research priorities and research design with community interests, leading to more patient-centered innovations in clinical practice.
ISSN:2374-3735
2374-3743