MyPaTH Story Booth
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Narrative Medicine. Basic parameters: 18 years — 99 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
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.
Primary outcome measures
- Number of stories collected [Time frame: September 2018]
Secondary outcome measures (3)
- Comparison of approaches to categorize story contents [Time frame: Cross-sectional analysis of the first 100 stories, September 2018]
- Number of researchers who access the online story archive [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 [Time frame: Annually at 2 and 3 years of follow-up]
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Study design
- Observational model
- Other
Study locations
United States · 1 center
- University of Pittsburgh — Pittsburgh
Publications
- Hamm M, Wilson JD, Lee YJ, Norman N, Winstanley EL, McTigue KM. Substance use as subtext to health narratives: Identifying opportunities for improving care from community member perspectives. Patient Educ Couns. 2024 Nov;128:108384. doi: 10.1016/j.pec.2024.108384. Epub 2024 Aug 9. PMID 39168050
- 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. PMID 36961380
- 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
Identifiers
NCT: NCT03494075 · STUDY20110315