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MyPaTH Story Booth

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ClinicalTrials.gov Identifier: NCT03494075
Recruitment Status : Recruiting
First Posted : April 11, 2018
Last Update Posted : August 31, 2020
Sponsor:
Information provided by (Responsible Party):
Kathleen McTigue, University of Pittsburgh

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.

Condition or disease
Narrative Medicine

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 will 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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Study Type : Observational
Estimated Enrollment : 1000 participants
Observational Model: Other
Time Perspective: Prospective
Official Title: MyPaTH Story Booth
Study Start Date : March 2016
Estimated Primary Completion Date : June 2025
Estimated Study Completion Date : June 2025

Resource links provided by the National Library of Medicine

MedlinePlus related topics: Caregivers




Primary Outcome Measures :
  1. Number of stories collected [ Time Frame: September 2018 ]
    The goal of the project is to generate a searchable archive of patient and caregiver narratives


Secondary Outcome Measures :
  1. Comparison of approaches to categorize story contents [ Time Frame: Cross-sectional analysis of the first 100 stories, September 2018 ]
    Researchers will compare how story contents are categorized using (a) qualitative research coding with survey data collected from (b) participants and (c) study staff

  2. 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. ]
    To support health researchers' use of patient and caregiver narratives in formulating research questions

  3. Number of research teams who engage stakeholders through the project [ Time Frame: Annually at 2 and 3 years of follow-up ]
    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.



Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


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Ages Eligible for Study:   18 Years to 99 Years   (Adult, Older Adult)
Sexes Eligible for Study:   All
Sampling Method:   Non-Probability Sample
Study Population
Anyone over the age of 18 who can provide informed consent
Criteria

Inclusion Criteria:

  • Over the age of 18 and the ability to read and understand English

Exclusion Criteria:

  • Researchers will exclude individuals who are not 18 years of age or older and/or do not provide informed consent

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03494075


Contacts
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Contact: Ana L Arita, MS 412-864-3025 ana111@pitt.edu
Contact: Kathleen M McTigue, MD 4126922940 kmm34@pitt.edu

Locations
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United States, Pennsylvania
University of Pittsburgh Recruiting
Pittsburgh, Pennsylvania, United States, 15213
Contact: Ana L Arita, MS    412-864-3025    ana111@pitt.edu   
Principal Investigator: Kathleen M McTigue, MD, MS, MPH         
Sponsors and Collaborators
University of Pittsburgh
Investigators
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Principal Investigator: Kathleen M McTigue, MD University of Pittsburgh
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Responsible Party: Kathleen McTigue, Associate Professor, University of Pittsburgh
ClinicalTrials.gov Identifier: NCT03494075    
Other Study ID Numbers: PRO15100466
First Posted: April 11, 2018    Key Record Dates
Last Update Posted: August 31, 2020
Last Verified: August 2020
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No
Keywords provided by Kathleen McTigue, University of Pittsburgh:
Patients
Caregivers