The Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) consortium was selected to receive a 2-year grant to implement a Pediatric rheumatology Learning Health System (LHS) that will work with networks in the Patient-Centered Outcomes Research Institute (PCORI) PCORnet Learning Healthcare System Collaborative.
The PARTNERS Pediatric LHS will provide support for patients with juvenile idiopathic arthritis (JIA) and their families to actively engage in care and self-management activities. JIA is a rare disease, making it difficult to study. Currently there is no cure for JIA. Recent advances in drug development have resulted in many therapies, including biologics. However, there remain many unanswered questions about how to use available therapies. While early diagnosis and initiation of treatment have proven to improve outcomes, variation exists in treatment patterns across providers, medical centers, and geographic locations.
The PARTNERS Pediatric LHS will systematically integrate viewpoints and actions of many stakeholders (i.e. patients, families, PARTNERS researchers, and healthcare providers) into collaborative efforts aimed at improving quality of care. This grant will allow PARTNERS to bring growth to an expanding PARTNERS network, and to offer opportunities for research into an emerging science of quality improvement.
Three of the PARTNERS consortium groups are actively involved in the development of the PARTNERS Pediatric LHS: the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), the Arthritis Foundation, and the Childhood Arthritis and Rheumatology Research Alliance (CARRA).
In the first part of the project, PARTNERS will leverage the work of PR-COIN, who have spent the last decade developing approaches to quality improvement that benefit from strong engagement with patient communities.
The PARTNERS Pediatric LHS will provide an innovative approach to share Arthritis Foundation and PR-COIN self-management tools directly through the Arthritis Foundation patient community, the world’s largest network of arthritis patients. By empowering patients to share these tools with any of their providers, PARTNERS will diversify the stakeholders participating in the PARTNERS Pediatric LHS to include all the healthcare providers caring for these patients, such as general pediatricians, physical therapists, and even mental health specialists.
Driving growth of the PARTNERS Pediatric LHS will also include expanding the number of participating clinical sites that actively practice quality improvement and LHS approaches. While the Arthritis Foundation has initiated an adult and pediatric Rheumatology Learning Health System (RLHS) that focuses on many forms of arthritis, the PARTNERS Pediatric LHS focuses only on JIA.
- Learn More About PARTNERS
- Learn More About Our Efforts to Conquer Childhood Arthritis
- Learn About Our Recent JIA Patient-Focused Drug Development Meeting