The Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) is a Patient Powered Research Network (PPRN) comprised of the Arthritis Foundation, the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), Childhood Arthritis and Rheumatology Research Alliance (CARRA), the Lupus Foundation, and CureJM Foundation.
PARTNERS was recently awarded one of four PCORnet pilot grants to develop a Learning Health System that firstly targets juvenile idiopathic arthritis (JIA). Learning Health Systems (LHS) are unique, as they are designed to systematically integrate patient perspectives with, research, quality improvement science, and clinical care to improve the delivery of healthcare and in turn, get better clinical outcomes. Working more closely together, PARTNERS intends to smash through the 17 year delay known to occur between the discovery of best practices and promising research findings, and their routine implementation into daily clinical practice.
Juvenile Idiopathic Arthritis is a rare disease, making it more 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, standardize treatment across providers, medical centers, and geographic locations. PARTNERS’ vision is that all children with rheumatic conditions will be as healthy as they can be, regardless of which medical center or doctor they see for care.
What are the PARTNERS LHS goals? To co-produce programs and resources that meaningfully improve health outcomes for children with rheumatic conditions by integrating best practice clinical care with improvement science while generating new knowledge. In so doing PARTNERS’ current aims are to: increase the proportion of JIA patients with inactive disease or low disease activity, improve patient quality of life, increase the number of patients participating in research, and expand the number of centers participating in learning network activities.
We are currently designing how to best align the activities and leverage the respective strengths of PARTNERS members to improve the lives of children with JIA. In the first part of the project, PARTNERS will leverage the work of one of its component organizations, PR-COIN, a collaborative improvement network who have incorporated systematic approaches to quality improvement that benefit from strong engagement with patient communities.
In June 2018, representatives from PR-COIN (including clinicians and members of the Parent Working Group), the Arthritis Foundation, CARRA, Institute for Healthcare Improvement, and Cincinnati Children’s Anderson Center came together to provide input on PARTNERS’ vision, mission, and model of interventions that together can improve outcomes. The approach will integrate PR-COIN center improvements with research and patient facing resources, developing a more comprehensive improvement approach, and setting a path for spread to other centers. The improvement efforts will include a treatment strategy focused on keeping patient treatment goals at the center, shared decision making, and self-management support. Self–management supports will be integrated with the Arthritis Foundation patient facilitated network and community resources for broader reach and impact. There will be a community conference in January 2019 for existing PR-COIN member centers and additional pediatric rheumatology centers to join and come together to start implementing these approaches.
We are excited to work with the PARTNERS LHS members and believe we are creating a new way to address gaps and opportunities in health care.
“I understand the importance of ensuring access to quality, affordable health care and I was proud to support the PARTNERS’ application for the Patient-Centered Outcomes Research Institute (PCORI) grant. This grant will be used to create a learning health system to improve research efforts and patient care to address the needs of children with Juvenile Idiopathic Arthritis. I would like to thank the Arthritis Foundation, the Childhood Arthritis and Rheumatology Research Alliance, the Pediatric Rheumatology Care and Outcomes Improvement Network, the Lupus Foundation of America, and Cure Juvenile Myositis for their valuable research to improve the care for children and families across the United States.”
– Congressman Garland Hale “Andy” Barr IV,
United States Representative for Kentucky’s 6th congressional district