Background: The PARTNERS Patient- Powered Research Network (PPRN) has been a successful model for engaging pediatric rheumatic disease stakeholders in promoting and participating in patient-centered research through an online presence, printed materials, and component advocacy organizations. Through engagement efforts, PARTNERS has uncovered an unmet need that also represents a compelling opportunity: assisting interested patients/caregivers in their efforts to proactively participate and engage in research.
Proposed Solution to the Problem: Through the use of an app-based “web of engagement,” the project team intends to leverage widespread access to smart phones in order to close the gap between the desire to participate in research and the presentation of opportunities to engage in research. The team intends to develop and pilot a process and supporting infrastructure that uses currently available, state-of-the-art mobile app platform technology.
- Personalize engagement
- Create a community of engagement opportunities
- Enable sharing
Activities: The project will:
- Develop a new “web of engagement” process model that allows for bidirectional communication between patients, families, and caregivers with the participating organizations and their associated applications
- Develop a diverse group of apps to foster engagement across the broadest possible spectrum of prospective participants
- Development and implementation of processes and policies to achieve engagement goals using mobile apps and a process-based app community infrastructure
- Pilot this model and infrastructure in the real world
Outcomes: The project team will develop a PARTNERS interactive subscription app, a connected community of PARTNERS-curated mobile apps, and a linkage of participant-contributed data between apps, across research studies, and PARTNERS organizations.
Patient and Stakeholder Engagement: Patients and caregivers will be recruited to participate in all stages of the project including codesign of the apps. They will receive the training necessary to optimize their contributions to the project.
Project Collaborators: This project is a collaboration of the members of the PARTNERS PPRN. Members include patient advocacy groups (Arthritis Foundation, Cure JM, Lupus Foundation of America), an investigator-sponsored research group (CARRA Registry/CARRA, Inc.), and a quality improvement group (PR-COIN). In addition, Boston Children’s Hospital, Duke University, Cincinnati Children’s Medical Center, and University of California San Francisco are also providing support.