MyPaTH Story Booth

Study Overview
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Brief Summary
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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.

Detailed Description
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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.

Official Title
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MyPaTH Story Booth

Conditions
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Narrative Medicine

Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 99 Years

Sexes Eligible for Study
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All

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | 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 | 

Secondary Outcome Measures

| Outcome Measure | 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 | 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 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Patients, Caregivers