Collaborating with Patients for Better Health

Improving Quality of Care

What if you could record information on your symptoms, health and quality of life on your own time at home? And, have that self-reported data sent to your doctor in real time? Then, when you go for your visit, you won’t have to remember everything that happened since the last time you saw your doctor. They would have your reported information and would be able to add clinical information from your visit. We want to build a model that allows for this unique and personalized patient-doctor dialogue. With the help of our partners and donors, it’s coming to life.

The Arthritis Foundation is taking the lead in piloting a model of healthcare in rheumatology by partnering with the Childhood Arthritis and Rheumatology Research Alliance (CARRA), the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), Understanding Childhood Arthritis Network – Canadian/Dutch Collaboration (UCAN, CAN-DU), the American College of Rheumatology (ACR), and the Dartmouth Institute for Health Policy & Clinical Practice.

Together we are building the Rheumatology Learning Health System (RLHS) to improve the quality of care for pediatric and adult arthritis patients. The model will combine existing arthritis patient registries (databases of patient health information typically used for research), electronic patient health records maintained at medical practices and information entered by patients themselves between visits with their doctors. This combination of data will provide a more complete picture of a patient’s condition which will improve care delivered, resulting in better health outcomes.

The RLHS is modeled after the Swedish Rheumatology Quality Registry, which is an interactive tool that helps patients and doctors prepare for office visits and work together as a team, even between visits, to decide on the best, personalized care plan. The RLHS is advancing and adapting this patient and doctor produced electronic-based approach for the arthritis community in the U.S.

Watch How We're Bringing Patients and Doctors Together

The RLHS will improve patient’s quality of care through better communication with health care providers with regular, more informed healthcare discussions. It also aims to improve patient self-management of their disease outside of the doctor’s office to achieve greater control of inflammation, pain and other arthritis symptoms.