Background: Patient input is critical for formulating research questions and identifying outcomes that matter to individuals making healthcare decisions. Yet it remains challenging for researchers to engage patients, and patients often lack opportunities for sharing their perspectives with researchers. Few initiatives systematically facilitate engagement across patient and researcher communities. While PCORnet includes infrastructure such as the MyPaTH Story Booth Project, which uses narratives to help researchers understand patient perspectives, its reach has been limited to PCORnet to date.
Proposed Solution to the Problem: Patients’ and caregivers’ stories convey rich information about what it is like to be ill, to seek better health, to provide care, and/or to access health services. The MyPaTH Story Booth Project, an indexed archive of patient and caregiver stories, can inform the development of people-centered research questions. Story Booth also fosters patient/researcher involvement in research. The project team proposes to leverage PCORI’s investment in Story Booth, taking it to scale from a PCORnet-focused project to one that broadly supports engagement of patients and caregivers with health researchers. The expanded archive will create opportunities for individual patients/caregivers and affiliates of patient communities within and outside of PCORnet to learn about patient-centered research and partner with researchers with similar health interests or research goals. It will also facilitate story sharing between caregivers and patients.
Objectives: (a) to engage patients and caregivers from diverse community partners in the sharing of stories to promote people-centered research and (b) to develop a people-centered online forum for sharing stories between patients, caregivers, and clinicians, and fostering research partnerships between researchers and people involved in healthcare decisions.
Activities: Community organizations and PCORnet networks will be engaged to collect health stories. Story Booth protocols for story collection will be enhanced with input from StoryCorps. To optimize the sharing of stories between patients, caregivers, clinicians and researchers, the project team will build an online interactive forum, accessible to all, and informed by diverse stakeholders.
Outcomes/Outputs: Updated Story Booth story collection and archiving protocols; materials to help individuals and community groups share their stories; and a stakeholder-codeveloped interactive website to support patient-centered research. The project team will assess the scope of the Story Booth archive expansion (e.g., number of stories, storyteller diversity) and website use (e.g., user feedback, website clicks).
Patient and Stakeholder Engagement Plan: Stakeholders are engaged on the core project team and the stakeholder advisory board. They have contributed to planning and will play an active role in implementing the project and designing the website. Additional advocacy groups will be engaged to share stories throughout the project.
Project Collaborators: Obesity Action Coalition; Institute for Patient- and Family-Centered Care; StoryCorps; ACHIEVA/The Arc of Western PA; the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network; The American BRCA Outcomes and Utilization of Testing (ABOUT) Network; the Community Engaged Network for All; Society of General Internal Medicine; Mid-South CDRN; PRIDEnet PPRN.