Project Summary
The Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) brings together children the two most prevalent pediatric rheumatic diseases, juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (lupus); their family members; and other key stakeholders in a new patient-centric model of collaboration that fully engages patients and families in decision making and governance to optimize the relevance and significance of research outcomes. PARTNERS includes healthcare providers, a clinician scientist-initiated research network (Childhood Arthritis and Rheumatology Research Alliance [CARRA]), three patient-advocacy groups (Arthritis Foundation [AF], Friends of CARRA [FoC], and Lupus Foundation of America [LFA]), and a quality-improvement learning network (Pediatric Rheumatology Care and Outcomes Improvement Network [PR-COIN]).
To assemble a patient-powered research network, we are extending our current registry of 9.000 children with rheumatic disease, focusing first on children with JIA and lupus. These diseases share both treatment approaches and physical, emotional, and social impact on patients and families.
PARTNERS will create a patient-centered learning health system in which participating groups bring complementary perspectives, infrastructure, and expertise to empower patients, clinicians, and researchers to learn from every patient interaction, conduct patient-centered outcomes research, and implement the findings.
Patient engagement is the core—patients connect, participate in the governance structure, and contribute to comparative effectiveness research through data collected at clinical visits and on electronic devices. We will leverage existing outreach and technology capabilities of the AF, FoC, and LFA to contact patients affected with JIA and lupus and to optimize capture of diverse patient perspectives, focusing on engagement of underserved populations.
These organizations anchor PARTNERS in the JIA/lupus community, raising awareness of the importance of, and opportunities for, patient engagement for research purposes. LFA will extend its online patient registry to enhance lupus-patient enrollment and electronically link to the CARRA Registry. AF and FoC will partner with PR-COIN to expand current JIA patient engagement. This grassroots approach will increase patient enrollment to support health care innovations.
Specifically, we are focusing our efforts on:
- Establishing a shared governance model, in which patients and advocates fully partner with clinician-scientists in network leadership
- Implementing consortium-wide strategies and metrics for enhanced patient engagement and adoption of patient-directed research priorities; and
- Coordinating and standardizing data collection and sharing across the consortium, extending existing online platforms for patient reported outcomes (PROs) and direct data transfer from electronic health record (EHR) to PARTNERS databases, eliminating duplicate collection of data elements, increasing the feasibility of widespread participation, and promoting integration of quality improvement and research as part of a learning health system.