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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.
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.
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| Measure | Description | Time Frame |
|---|---|---|
| Number of stories collected | The goal of the project is to generate a searchable archive of patient and caregiver narratives | September 2018 |
| Measure | Description | Time Frame |
|---|---|---|
| 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 |
| Number of researchers who access the online story archive |
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Inclusion Criteria:
Exclusion Criteria:
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Anyone over the age of 18 who can provide informed consent
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Emily L Klawsson, MS | Contact | 412-586-9796 | EKK15@pitt.edu | |
| Kathleen M McTigue, MD | Contact | 4126922940 | kmm34@pitt.edu |
| Name | Affiliation | Role |
|---|---|---|
| Kathleen M McTigue, MD | University of Pittsburgh | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Pittsburgh | Recruiting | Pittsburgh | Pennsylvania | 15213 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 39168050 | Result | 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. | |
| 36961380 | Result | 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. |
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| ID | Term |
|---|---|
| D000073935 | Narrative Medicine |
| ID | Term |
|---|---|
| D033262 | Narration |
| D003142 | Communication |
| D001519 | Behavior |
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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. |
| 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 |
| Result | 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 |