Lupus Foundation of America’s Collaboration in PARTNERS Seeks to Improve Pediatric Research and Care
New initiatives are underway to improve health care delivery and patient outcomes by designing research studies that include input from caregivers, patients and the medical teams who work with them. PARTNERS(Patients, Advocates and Rheumatology Teams Network for Research and Service) is one of these initiatives. PARTNERs is a PCORI funded patient powered research network that links children with rheumatic diseases and their families within the Lupus Foundation of America, the Arthritis Foundation and a quality improvement network called PR-COIN with pediatric rheumatology medical research teams in the Childhood Arthritis and Rheumatology Research Alliance (CARRA). The goal of PARTNERS is to improve the way research is done by engaging these children and their families in the conduct of research that is important to them.
Identifying the “best” care for children with complex rheumatic diseases has been a challenge for many years. While clinicians have worked to develop new treatments, comparing treatments in order to determine which plan of care is best for the different healthcare needs of each child has been challenging. Because each child deserves the best care for their unique illnesses, dedicated pediatric rheumatologists from across the country have worked together to develop consensus treatment plans (CTPs) that are now being used to develop the highest quality standard of care treatment plans. So far, CTPs have been developed for systemic juvenile idiopathic arthritis (JIA), localized scleroderma, lupus nephritis and juvenile dermatomyositis. Work is underway to develop CTPs for many other rheumatic conditions.
As physicians work with families to implement these CTPs, input from children with rheumatic diseases and their families within the PARTNERS initiative has become a critical part of this process. They play an important role in helping researchers discover the best treatment plan for the child. By sharing their perspectives, including concerns and suggestions, parents can help shape and improve the research that is conducted. Recently, families of children with systemic JIA worked closely with CARRA researchers to design a survey to identify factors that might influence a patient’s decision to start a new treatment. Input from this group was critical and helped assure the design of research that will support continued improvements in CTPs.
When families work together with the health care team, sharing information, data and their perspectives on important healthcare issues, pediatric researchers can design studies to improve care and best meet the needs of the child. As PARTNERS research projects are implemented, children and their families will continue to play a critical role in improving the research that leads to high quality care. To achieve our goals of providing the best care for all children, we will need your input and help!
Please stay tuned for future opportunities to become involved in pediatric rheumatology research.