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Patient Stories Can Make a Difference in Patient-Centered Research Design
Laurie Lovett Novak1, Sheba George2,3, Kenneth A Wallston4
1Department of Biomedical Informatics, Vanderbilt University Medical Center, USA.
Journal of Patient Experience
|January 18, 2021
Summary
Patient stories in community engagement studios help researchers understand lived experiences. These narratives provide context, depth, and mutual understanding, leading to more patient-centered research and clinical innovations.
Area of Science:
- Health Services Research
- Community-Based Participatory Research
Background:
- Growing emphasis on patient-centered research.
- Emergence of new community engagement methods.
Purpose of the Study:
- To analyze the functions of stories in Community Engagement Studios.
- To understand how stories contribute to patient-centered research.
Main Methods:
- Analysis of transcripts from 13 Community Engagement Studios.
- Identification of recurring functions served by participant stories.
Main Results:
- Identified 4 major functions of stories: establishing mutual understanding, adding expansion and depth, characterizing abstract concepts, and providing context for experience.
- Contextualizing experience was the most frequent function.
- Stories effectively communicate complex patient experiences.
Conclusions:
- Stories are valuable tools for aligning research with community interests.
- Utilizing patient stories can lead to more patient-centered innovations in clinical practice.
- Enhancing patient engagement through storytelling improves research relevance.
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