Background: The IBD Partners Patient- Powered Research Network (PPRN) was developed to foster a collaborative environment that incorporates the patient voice and values into each stage of the research cycle in a meaningful and effective way. To date, the project team has: established patient-centered governance; developed an interactive patient portal to recruit, retain, and engage members in research prioritization; enrolled and collected standardized data from more than 15,500 members from all 50 US states; developed processes to recruit PPRN members for participation in clinical research; and completed over 40 high-impact research studies in collaboration with external researchers.
Proposed Solution to the Problem: The project team proposes to strengthen its patient-researcher partnership model and enhance clinical research through capturing strong, accessible, and reliable patient and caregiver voices. Using an evidence-based approach to build capacity, the team aims to increase its impact by improving the representativeness and quality of the patient voice. To ensure the project’s network and patient input is representative of the patient population, the team will collaborate with other PPRNs, external engagement and diversity experts, and large clinical and health plan data networks to broaden and deepen patient membership within the community.
Grow network and attract more diverse members and enhance engagement with patients to make patient-driven research more impactful
Address research inefficiencies and facilitate enrolling patients into clinical studies, and advance the project’s sustainability model through cross-network business development to elevate the stature and importance of organizations that facilitate patient-driven research
Activities: The project will:
Continue to support PPRN growth and diversity and the collection of patient-generated health data
Update a patient-prioritized research agenda and disseminate this within PCORnet and beyond
Increase engagement of PPRN members through targeted communication, training, creating progressive opportunities for engagement and leadership
Refine and promote processes for screening and recruitment to clinical trials and other studies
Outcomes: Outcomes of the project include: a patient-generated research agenda, a description of the distribution of IBD within PCORnet by race/ethnicity, a white paper on minority recruitment to immune-disease PPRNs, curation and delivery of research trainings to engaged patients, and strategies to promote the role of PPRNs in patient-focused drug development.
Patient and Stakeholder Engagement: Patients and representatives from patient organizations will be involved in project leadership, governance, working committees, and in the planning and conduct of the work for each of the above objectives.
Project Collaborators: Crohn’s & Colitis Foundation, University of North Carolina
This project will build on the existing Inflammatory Bowel Disease (IBD) Partners Patient-Powered Research Network infrastructure and current Engagement Award activities to meet patient demand for information on the effects of COVID-19 among the IBD community. The study team aims to prioritize the information and dissemination preferences of the IBD community related to emerging COVID-19 research to provide critical data for patients to make informed healthcare decisions.
The project team will engage IBD patients through a series of virtual focus groups to prioritize COVID-19-related research questions and preferences for sharing information, conduct a systematic review of the published literature to identify relevant research, and conduct further focus groups to inform dissemination activities.