Bringing patient voices into research
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:
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.
Please contact the Story Booth team if you have interest in using our database for research to improve health.
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.
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 PI, PRIDEnet
Joseph Nadglowski Story Booth Engagement Award Investigator President & CEO Obesity Action Coalition
Natasha Norman Story Booth Research Assistant University of Pittsburgh
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 ACHIEVA
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
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.
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
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
