MAY 10, 2019

Patient Partner News: Fostering Stakeholder Engagement Using Narratives

The MyPaTH Story Booth project aims to help researchers understand the perspectives of patients and caregivers facing illness or who have difficulty accessing health care – so that they can develop more patient-centered research questions. The project also hopes to foster introductions between researchers and patients/caregivers that can lead to meaningful relationships where patients and researchers partner as members of the research team. Over 430 stories have been collected to date by teams at two PaTH sites, the University of Pittsburgh and Johns Hopkins University.

In 2018, the Story Booth project received a PCORI Eugene Washington Engagement Award to expand the scope of the project by developing a stakeholder-informed public website where stories can be shared and patients are empowered to learn about potential research collaborations. On October 16 and 17, 2018, physicians, researchers, patient partners, professors, and community organization leaders from around the country gathered to discuss how to create a vibrant online community that fosters story sharing and the development of stakeholder-engaged research teams. Partnering community groups included the Institute for Patient and Family-Centered Care (IPFCC), Healthy African American Families (HAAF), the Obesity Action Coalition, and ACHIEVA/The ARC of Western Pennsylvania among others. Ms. Lia Hotchkiss attended from PCORI and participants from PaTH affiliates included Dr. Jennifer Kraschnewski from Penn State, Ms. Lilly Su from Johns Hopkins, and Ms. Cara Nikolajski from the UPMC Health Plan.

Web design firm Dezudio was on-hand to lead a collaborative design effort. Interactive exercises explored various web frameworks to gauge how their elements could add value to the Story Booth website. The workshop also delved into what it means to support stakeholder engaged research, explored issues of diversity and privacy, and considered common pitfalls of website design.

Day two focused on the wonderful work of the My Legacy project of StoryCorps – a nonprofit organization whose mission is to provide people of all backgrounds with the opportunity to record, share, and preserve their story. Maura Johnson led the workshop, which focused on StoryCorps’ work on how to elicit meaningful storytelling. Elements of great storytelling, interview best practices, interview tips, recruitment strategies, and diversity were all explored. Maura left us with a better understanding of how to collect and share meaningful stories.

Overall this event was a successful step in the future of the MyPaTH Story Booth. Web designers and programmers will continue to work with stakeholders in 2019 as story collection continues, and we are excited to see where the project will go. Be sure to stay tuned for updates!