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Clinical Trial Details — Status: Recruiting

Administrative data

NCT number NCT03494075
Other study ID # STUDY20110315
Secondary ID
Status Recruiting
Phase
First received
Last updated
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
Health authority
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
Accepts healthy volunteers
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

Study Design


Related Conditions & MeSH terms


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
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