Link to the University of Pittsburgh Homepage
Link to the University Library System Homepage Link to the Contact Us Form

The Development of a Patient and Caregiver Narrative Archive to Support Patient-centered Research

McTigue, Kathleen M. (2018) The Development of a Patient and Caregiver Narrative Archive to Support Patient-centered Research. European Journal for Person Centered Healthcare, 6 (4). pp. 565-570. ISSN 2052-5656

Published Version

Download (86kB) | Preview


Background: Engaging patients and other stakeholders is a key tenet of patient-centered research, but can be challenging to implement.

Objectives: To determine the feasibility of using patient narratives for informing comparative effectiveness research and engaging patients in the research process.

Research Design: Cross-sectional study.

Participants: The first 153 participants to share a story using the MyPaTH Story Booth protocol were, on average, aged 51 (18.8). Most were white (79%) or African American (13%) and well-educated.

Measures: Participants self-categorized their narratives according to the sort of health experience(s) described (e.g., diagnosis, doctor/patient communication), the anatomic locations of health problems discussed and the type of disorder or condition addressed. They also reported on whether they were interested in engaging in clinical research as a participant or stakeholder and their satisfaction with the study processes.

Results: The archived narratives addressed a wide range of health experiences of relevance to clinical researchers, most often medical treatment (82%), communication with healthcare team members (81%), diagnosis (64%), symptoms (61%), healthcare access (60%) and health decision-making (60%). Health problems related to diverse anatomic locations were addressed. Health conditions such as mental health concerns (35%), infections (23%) and cancers (20%) were often discussed. Among participants, 63% expressed interest in learning of opportunities for stakeholder engagement in research related to their stories. Ninety seven percent were very satisfied or satisfied with the MyPaTH Story Booth process.

Conclusions: The narrative archive represents a unique resource for researchers interested in developing and carrying out patient-centered research projects to improve health or healthcare.


Social Networking:
Share |


Item Type: Article
Status: Published
CreatorsEmailPitt UsernameORCID
McTigue, Kathleen M.kmm34@pitt.edukmm34
Date: 2018
Date Type: Publication
Journal or Publication Title: European Journal for Person Centered Healthcare
Volume: 6
Number: 4
Publisher: European Society for Person Centered Healthcare
Page Range: pp. 565-570
Schools and Programs: School of Medicine > Medicine
Refereed: Yes
Uncontrolled Keywords: Narratives, patient-centered outcomes research, person-centered healthcare, stakeholder engagement
ISSN: 2052-5656
Funders: Patient-Centered Outcomes Research Institute (PCORI)
Article Type: Research Article
Date Deposited: 14 May 2021 13:03
Last Modified: 14 May 2021 13:03


Monthly Views for the past 3 years

Plum Analytics

Actions (login required)

View Item View Item