Story Booth’s mission is to make patients’ voices central to health research.

We seek to share stories in the voices of those who are living with an illness or experiencing any kind of health challenge. Our belief is that this can empower patients and caregivers to:

  • Educate health researchers about what matters to people who are struggling with ill health
  • Support each other through the often-challenging journeys brought on by health problems
  • Join research teams as partners to help make sure health care is always asking:
    • Does this research matter to patients?
    • Will this research improve patients’ lives?

Researchers, patients, caregivers, and patient groups worked together to develop the Story Booth project and this public study website.

The Story Booth project is structured as a research archive, so stories can be used only for the purposes outlined in the Informed Consent document. This is a higher standard of protection than what many other digital story collections use. Based on stakeholder input, we take measures to mask the identity of storytellers. We welcome feedback.


Our Story

Story Booth began as a resource to support the PaTH Clinical Research Network’s mission of using Patient Empowered Research to address the questions and concerns that matter most to our communities in order to make better health decisions. With guidance from patient partners across the PaTH Network, the University of Pittsburgh team began story collection with an audio booth at the Falk Medical Building. We subsequently expanded to phone-based story recording, and added a new site for in-person story collection – with the booth traveling to Johns Hopkins Medical Center under the leadership of Dr. Cheryl Dennison Himmelfarb, where it remained until September 2019. Critical input from our patient partners shaped early story collection policies such as the need for telephone recording sessions, the expansion to include caregiver views, and the need for post full unedited stories to our website in order to ensure that patient/caregiver words are not taken out of context.

Our roots are in PaTH, and the nation-wide PCORnet, which aim to make patient-centered research using real world evidence easier to accomplish and more efficient. This connection with hundreds of researchers and multiple studies holds promise for bringing together patients, caregivers and researchers seeking engaged research opportunities. However, it is important to note that Story Booth is a resource for all patients/caregivers – not just those who seek care at PCORnet-affiliated institutions. Likewise, clinicians and researchers affiliated with non-PCORnet sites are welcomed to use this resource.

A PCORI Eugene Washington Engagement Award enabled the development of this website, using a stakeholder-engaged design. In October 2018, 31 individuals representing the perspectives of patients, health advocacy groups, caregivers, educators, researchers, health plans, stakeholder engagement experts and website designers gathered to lay the groundwork for the site (photo below). StoryCorps© ran a workshop on the second day of the event to help us learn more about helping storytellers share their perspectives. This website reflects the work of this talented group of collaborators.

The Story Booth team is most grateful to the many people who have shared their time, effort, and most of all, stories, with this project.


The Story Booth Team

Kathleen McTigue
Associate Professor of Medicine
University of Pittsburgh
Lead PI, PaTH Clinical Research Network

Cheryl Dennison Himmelfarb
PaTH Network Story Booth Site Lead
Associate Dean Research, Office for Science and Innovation
Sarah E. Allison Professor for Research and Self-Care
Johns Hopkins University

Sabrina Elias, MSN, RN
Story Booth Site Project Coordinator
PhD Fellow
Johns Hopkins University School of Nursing

Megan Hamm
PaTH Network Engagement Lead
Assistant Professor of Medicine
Director of Qualitative, Evaluation, and Stakeholder Engagement Research Services

Jen Kraschnewski
Story Booth Engagement Award Investigator
Associate Professor and Vice Chair for Research,
Department of Medicine
Penn State College of Medicine

Cassie Lewis-Land, MS, CCRP
Program Administrator
Recruitment Innovation Unit
Johns Hopkins Institute for Clinical & Translational Research
Johns Hopkins University

Mitchell Lunn
Story Booth Engagement Award Investigator
Assistant Professor of Medicine
Stanford University Medical Center

Joseph Nadglowski
Story Booth Engagement Award Investigator
President & CEO
Obesity Action Coalition

Natasha Norman
Story Booth Research Assistant
University of Pittsburgh


Story Booth Stakeholder Advisory Board

Marie Abraham
Institute for Patient & Family Centered Care

Malon Murphy
Media & Communication Specialist

Alex Alexander
National Alzheimer's & Dementia Patient- & Caregiver-Powered Research Network

Michael Rothberg
Cleveland Clinic

Allison Dushack

Sharon Terry
Genetic Alliance

Megan Hamm
University of Pittsburgh

Neely Williams
STAR Clinical Research Network

Robin Karlin
American BRCA Outcomes and Utilization of Testing Network


Our Partners

Story Booth partners are health care systems, educational institutions and community organizations who see the value of patient-centered research and whose patients, caregivers and providers share stories and collaborate with clinical research teams. We welcome new partnering organizations. To learn more about partnering with Story Booth to amplify the voices of your patient or caregiver community, contact our team.


PaTH Network Stakeholder Engagement Work Group

This group has helped guide the implementation of Story Booth and evaluates research proposals using Story Booth stories.

Kendal Bacharach
University of Pittsburgh

Young Ji Lee
University of Pittsburgh

Anu Paranjape
Temple University

Daniel Ford
Johns Hopkins University

Jody McCullough
Penn State College of Medicine

Tricia Piechowski
University of Michigan

Megan Hamm
University of Pittsburgh

Kathleen McTigue
University of Pittsburgh

Victoria Schlieder
Geisinger Health

Megan Gauvey-Kern
Johns Hopkins University

Photo on home page: Lilly Su, a researcher from Johns Hopkins, shares ideas about using social media to reach Story Booth goals at the Story Booth website planning meeting.

Copyright 2019 | PaTH Network