Our Collaborating With Patients for Better Health science initiative has been getting more attention. The National Health Council (NHC) has asked Arthritis Foundation Senior Vice President Guy Eakin, PhD, to speak to members of the Science of Patient Engagement Symposium Planning Committee about the challenges of helping patients learn to communicate with their health care providers and become partners in the decision making process to achieve personalized care management.
Dr. Eakin will speak to the group of medical, scientific and research leaders from a variety of patient advocacy organizations, nonprofit health groups and industry on October 29, 2019, at the Capital Hilton in Washington, DC.
A big part of this scientific initiative has been creating the Rheumatology Learning Health System (RLHS) in collaboration with major partners. The goal of RLHS is to improve quality of care by enhancing communication between patients and their doctors through electronic dashboards.
“We’re trying to improve patient care by helping patients and doctors prepare for office visits, working together as a team, and improving communication between visits,” explains Dr Eakin. “This is a difficult experiment and exactly the type of challenge we’re proud to be working with patients and professionals to accomplish.”
Dr. Eakin will share the team’s experiences, driven by patient involvement, to create the electronic dashboards, which will support meaningful conversations and shared decisions about care and treatment plans. They include patient-reported outcomes (PROs), enabling patients to list questions and concerns in advance of a clinical visit. Patients and doctors can turn on/off different data elements to focus on the most meaningful data.
The Arthritis Foundation is working with the following partner organizations: 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); and the American College of Rheumatology (ACR). The Dartmouth Institute for Health Policy & Clinical Practice facilitates the group by providing strategic oversight and support for the RLHS.
“Making a conversation happen through electronic medical records (EMR) is not trivial. That speaks to why it was so important to gather major registries together and not select just one partner for this project,” Dr. Eakin says. “This is exactly the type of challenge we’re proud to be working with patients and professionals to accomplish. We are thankful for the generosity of our donors for making this project possible.”