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

Authors :
Yolanda Vaughn
Tiffany L Israel
Yvonne Joosten
Jabari S Ichimura
Kenneth A. Wallston
Laurie L. Novak
Sarah C. Stallings
Christopher L Simpson
Sheba George
Neely Williams
Consuelo H. Wilkins
Source :
Journal of Patient Experience, Vol 7 (2020), Journal of Patient Experience
Publication Year :
2020
Publisher :
SAGE Publishing, 2020.

Abstract

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.

Details

Language :
English
ISSN :
23743743 and 23743735
Volume :
7
Database :
OpenAIRE
Journal :
Journal of Patient Experience
Accession number :
edsair.doi.dedup.....76312114dc850fcf2213a09039390ae5