MyPaTH Story Booth

Narrative Medicine Clinical Trial

Official title:

MyPaTH Story Booth

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT03494075
• Other study ID #: STUDY20110315
• Status: Recruiting
• Start date: March 2016
• Est. completion date: June 2025

Study information

• Verified date: May 2024
• Source: University of Pittsburgh
• Contact: Emily L Klawsson, MS
• Phone: 412-586-9796
• Email: EKK15[@]pitt.edu
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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 information / eligibility

• Status: Recruiting
• Enrollment: 2000
• Est. completion date: June 2025
• Est. primary completion date: June 2025
• Gender: All
• Age group: 18 Years to 99 Years

Eligibility

Inclusion Criteria:

• Over the age of 18

Exclusion Criteria:

• Researchers will exclude individuals who are not 18 years of age or older and/or do not provide informed consent

Related Conditions & MeSH terms

• Narrative Medicine

Locations

Country	Name	City	State
United States	University of Pittsburgh	Pittsburgh	Pennsylvania

Sponsors (1)

Lead Sponsor	Collaborator
University of Pittsburgh

Country where clinical trial is conducted

United States, 

References & Publications (2)

McTigue KM, Fear D, Hunter K, Karanam S, Uhrig J, Alston T, Dillon S, Faust J, Kim J, LaRosa A, Postol B, Umegbolu S, Hamm M. The development of a patient and caregiver narrative archive to support patient-centered research. Eur J Pers Cent Healthc. 2018 Dec;6(4):565-570. doi: 10.5750/ejpch.v6i4.1546

Shah VK, Hamm M, Glynn NW, Rockette-Wagner B, McTigue K. Comparing survey data to qualitative themes in patient stories to help researchers better identify pressing community healthcare needs. J Eval Clin Pract. 2023 Aug;29(5):793-801. doi: 10.1111/jep.13837. Epub 2023 Mar 24. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Number of stories collected	The goal of the project is to generate a searchable archive of patient and caregiver narratives	September 2018
Secondary	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	Cross-sectional analysis of the first 100 stories, September 2018
Secondary	Number of researchers who access the online story archive	To support health researchers' use of patient and caregiver narratives in formulating research questions	Annually at 2 and 3 years of follow-up the number of researchers who accessed stories will be reviewed.
Secondary	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.	Annually at 2 and 3 years of follow-up