Background: Despite the project team’s success at recruiting consented patient participants into the ArthritisPower Patient Powered Research Network (PPRN) and involving patients in externally funded studies, the researchers face three important engagement hurdles: mobilizing a diverse population; activating more participants to regularly contribute data and engage with the app for research; and fully synchronizing engagement tactics and metrics with fellow PPRNs to identify and share best practices.
Proposed Solution to the Problem: The project team seeks to: diversify the study population of ArthritisPower to be more responsive to the needs of patients and other stakeholders; test and track recruitment, engagement, and retention strategies to improve the efficiency and effectiveness of patient-driven research; and share best practices with peer networks and work with them to develop shared metrics and conduct stakeholder engagement and business development activities that highlight the unique value of PPRNs for engaging patients in research.
Enhance the inclusiveness of the PPRN by engaging a more diverse group of participants for patient-centered CER
Activate a diverse cohort of PPRN participants as patient research partners through implementation and assessment of a new participant navigation model
Increase awareness among stakeholders of the value of the PPRN and other PCORnet research resources through shared engagement metrics and coordinated stakeholder engagement
Activities: The project will:
Conduct community engagement studios and key informant interviews, establish a patient engagement advisory panel, and assess new engagement approaches (including social media, etc.) in order to engage a more diverse group of participants for research
Implement and assess a study navigation model and interactive educational webinars to increase participant activation
Share engagement metrics and coordinate stakeholder engagement for business development with other PPRN partners
Outcomes: The short-term objectives of this two-year project include mobilizing a diverse group of existing ArthritisPower participants for ongoing assistance to engage a larger and more inclusive population of arthritis patients in the PPRN, and quantitatively capturing and conveying the value of PPRNs’ unique ability to engage patients in research. In the medium term, the project team anticipates improving the representativeness of the patient population in ArthritisPower and securing new research sponsorship interest for studies. The long-term outcome is a sustainable, representative patient-powered research network that is responsive to the needs of stakeholders.
Patient and Stakeholder Engagement: Patients will participate in engagement groups, key informant interviews, and the patient engagement advisory panel.
Project Collaborators: Patient leaders and advisors, experts in minority health, other PPRNs, and PCORnet Clinical Research Networks (CRNs).
This project will leverage existing engagement infrastructure, including patient stakeholder partnerships and outreach campaigns, to design and conduct an autoimmune COVID-19 project. The project will gather information about COVID-19 and its impact on people living with autoimmune, rheumatic, and related conditions; provide information and support related to COVID-19 for patients; and reach new patients who may be eligible, but not yet engaged with ArthritisPower and patient-centered outcomes research.
The enhancement will extend the group’s reach to underrepresented patients by translating materials into Spanish and holding COVID-19-related educational webinars for patients with a focus on topics relevant to underrepresented communities.