The MyPaTH Story Booth will use an (audio) "document" approach to elicit in depth experiential knowledge or perspectives from patients and caregivers by recording their personal stories.
Modeled after the Storycorps project and healthtalk.org, MyPaTH Story Booth will use an (audio) "document" approach to elicit in depth experiential knowledge or perspectives from patients and caregivers by recording their personal stories. Narratives provide a powerful framework for understanding patient problems and the larger process of illness, coping, and seeking health care. Narratives can provide meaning, context, and perspective for patients' situations and insight into failures in health care delivery, particularly for marginalized patients. MyPaTH Story Booth will provide simple instructions for how participants can work with an interview partner (e.g., a family member or friend) to record their story. MyPath Story Booth may be launched sequentially at each PaTH site to establish an initial archive of patient and caregiver narratives. Individuals who record narratives will be asked to provide limited "tags" to populate a searchable database (e.g., their age, sex, interview topic). The audio booth and procedures will also be made available to PaTH affiliated researchers who wish to augment the narrative database with narratives of patient partners from specific study populations.
Study Type
OBSERVATIONAL
Enrollment
2,000
University of Pittsburgh
Pittsburgh, Pennsylvania, United States
RECRUITINGNumber of stories collected
The goal of the project is to generate a searchable archive of patient and caregiver narratives
Time frame: September 2018
Comparison of approaches to categorize story contents
Researchers will compare how story contents are categorized using (a) qualitative research coding with survey data collected from (b) participants and (c) study staff
Time frame: Cross-sectional analysis of the first 100 stories, September 2018
Number of researchers who access the online story archive
To support health researchers' use of patient and caregiver narratives in formulating research questions
Time frame: Annually at 2 and 3 years of follow-up the number of researchers who accessed stories will be reviewed.
Number of research teams who engage stakeholders through the project
The project aims to facilitate connections between individuals who have real-world insights and experience with health care or health care delivery and health researchers.
Time frame: Annually at 2 and 3 years of follow-up
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