GUEST BLOG: The Power of Sharing your Story

by Natasha Norman

I want to thank The Mast Cell Disease Society for inviting Story Booth virtually to this year’s TMS MastCellCon, to share about our project and how we would love for the TMS community to share their experience as a patient, caregiver, health provider, or research participant.

The Story Booth first began as a resource to support the PaTH Clinical Research Network. This network is a partnership between the University of Pittsburgh and UPMC, Penn State Milton S. Hershey Medical Center and Penn State College of Medicine, Lewis Katz School of Medicine at Temple University and Temple Health System and many other institutions.

It is meant to grow Patient Empowered Research that addresses the questions and concerns that matter most to our communities to make better health decisions. We work under the nationwide PCORnet, which aims to improve patient-centered research, using real-world evidence through collaboration.

We believe that this can empower patients and caregivers to:

• Help patients and caregivers support each other through the often-challenging journeys brought on by health problems
• Educate health researchers about patient and caregiver experience
• Bring together storytellers and researchers with a shared interest to form patient-partnered research teams

Story Booth is a resource for all patients/caregivers – not just those who seek care at PCORnet-affiliated institutions. Story Booth has had the fortune to work with community organizations to support their work amplifying the many voices and experiences regarding the health care system.

The purpose of this study is to create an archive of the patient, caregiver, and research participant stories that researchers can use to better understand people’s experiences with health, illness, coping, and the healthcare system. Researchers hope their findings will lead to the development of research studies that address topics that are important to patients and caregivers.

Participation involves one 45-minute session that takes place over the phone. Participants will have a pre-interview survey, a 20-minute audio-recorded interview, and a post-interview survey. We welcome anyone 18 or older, globally, with a story (stories) to share. We are also happy to do stories in pairs—loved ones, friends, caregivers, etc.

If you would like to hear other’s stories, submit a request to be contacted, or view our special collection page, please visit our website or you can reach me, Natasha Norman, at Mystory@pitt.edu or 412-208-5241, between 9:00a – 4:00p ET.

For more information click here.

Natasha Norman, MSW. I have been the project coordinator for the Story Booth project at the University of Pittsburgh, under the Center for Research on Health Care for the last four years. As an alum of the University of Pittsburgh, where I received my MSW with a  concentration in children, youth and families, I most often spent my time listening to peoples experiences navigating various institutions (i.e. health networks, support of incarcerated individuals,  education prep courses). To become more informed, empathetic, and effective in patient-centered care/research it needs to be holistic and the introduction of storytelling or narrative work is a great entry point to understanding the needs of many. In my time with Story Booth we have been fortunate to hear stories around the world in regards to health care; over 300 COVID-19 stories, Story Inspired art from college students, and our special collection on Autoimmune Disease’s in collaboration with our community partner, Autoimmune Registry.