Clinical trial NCT03494075: MyPaTH Story Booth
Official title: MyPaTH Story Booth
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Narrative Medicine
Keywords: Patients
Caregivers
Lead sponsor: University of Pittsburgh
Sponsor class: OTHER
First posted: 2018-04-11
Enrollment: 2000
Sex: ALL
Minimum age (years): 18
Maximum age (years): 99
Standard ages: ADULT
OLDER_ADULT
Observational model: OTHER
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Anyone over the age of 18 who can provide informed consent

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.

Eligibility criteria: 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

Primary outcomes:
measure: Number of stories collected
timeFrame: September 2018
Secondary outcomes:
measure: Comparison of approaches to categorize story contents
timeFrame: Cross-sectional analysis of the first 100 stories, September 2018
measure: Number of researchers who access the online story archive
timeFrame: Annually at 2 and 3 years of follow-up the number of researchers who accessed stories will be reviewed.
measure: Number of research teams who engage stakeholders through the project
timeFrame: Annually at 2 and 3 years of follow-up
Other outcomes:
Locations:
city: Pittsburgh
country: United States
facility: University of Pittsburgh
state: Pennsylvania
Study officials:
affiliation: University of Pittsburgh
name: Kathleen M McTigue, MD
role: PRINCIPAL_INVESTIGATOR
References:
citation: 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.
citation: 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