MyPaTH Story Booth
- Conditions
- Narrative Medicine
- Registration Number
- NCT03494075
- Lead Sponsor
- University of Pittsburgh
- Brief Summary
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.
- Detailed Description
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.
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 2000
- Over the age of 18
- Researchers will exclude individuals who are not 18 years of age or older and/or do not provide informed consent
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Number of stories collected September 2018 The goal of the project is to generate a searchable archive of patient and caregiver narratives
- Secondary Outcome Measures
Name Time Method Number of researchers who access the online story archive Annually at 2 and 3 years of follow-up the number of researchers who accessed stories will be reviewed. To support health researchers' use of patient and caregiver narratives in formulating research questions
Number of research teams who engage stakeholders through the project Annually at 2 and 3 years of follow-up 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.
Comparison of approaches to categorize story contents Cross-sectional analysis of the first 100 stories, September 2018 Researchers will compare how story contents are categorized using (a) qualitative research coding with survey data collected from (b) participants and (c) study staff
Trial Locations
- Locations (1)
University of Pittsburgh
🇺🇸Pittsburgh, Pennsylvania, United States