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The development of a patient and caregiver narrative archive to support patient-centered research

Kathleen M McTigue, David Fear, Ken Hunter, Sri Karanam, James Uhrig, Treva Alston, Stacey Dillon, Jenni Faust, Juliana Kim, Anthony LaRosa, Barbara Postol, Sylvia, Megan Hamm


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.


Narratives, patient-centered outcomes research, person-centered healthcare, stakeholder engagement

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