Our Rheumatology Learning Health System Is Starting to Attract Attention!

A big part of our Collaborating With Patients for Better Health scientific initiative has been development of the Rheumatology Learning Health System (RLHS) in collaboration with some of our major partners. The goal of RLHS is to improve quality of care for pediatric and adult arthritis patients.
Suz Schrandt, the Arthritis Foundation’s patient engagement director, was one of the coauthors of an award-winning abstract poster presentation at the recent Childhood Arthritis and Rheumatology Research Alliance (CARRA) annual scientific meeting. The poster presentation, entitled “Partnering With Patients and Families to Coproduce Better Care and Outcomes,” won the Patient Engagement Award, competing with about 75 other posters. It illustrated how patients and families have worked together with doctors, other health care providers (HCPs) and partner organizations to develop an integral dashboard tool for RLHS, which displays patient-reported data, clinical data and medications over time that can be used during a clinic visit.

During the initial pilot phase of this project, the group has been able to create and test paper-based versions of the dashboard at three pediatric sites: Hackensack Meridian Health in New Jersey, Stanford Children’s Health Care in California and Wake Forest Baptist Health-Brenner Children’s Hospital in North Carolina. The teams developed the prototype dashboards through biweekly webinars, which included multidisciplinary clinical care teams and parent partner groups, bringing the voice and experience of parents and families into the process.

The aim of the dashboards is to support meaningful conversations and shared decisions about care and treatment plans. The dashboard will include patient-reported outcomes (PROs), enabling patients to list questions and concerns at any time. Patients and HCPs can turn on/off different data elements to focus on trend comparisons.
Based on this work, the group is ready to begin creating an electronic dashboard to launch at the three pediatric sites in November 2019. Here are samples of the information you might find on a prototype dashboard:


The Arthritis Foundation is working with leaders from the following partner organizations: 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). This group is facilitated by the Dartmouth Institute for Health Policy & Clinical Practice, which provides strategic oversight and support for RLHS. The project aims to improve patient care by helping patients and doctors prepare for office visits, working together as a team, and improving communication between visits.

“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,” explains Arthritis Foundation Senior Vice President Guy Eakin, PhD. “This is a difficult experiment, and exactly the type of challenge we’re proud to be working with patients and professionals to accomplish. We’re approaching our pilot phase for launch of EMR connected patient dashboards.”

The partner organizations will meet in Chicago on May 15 to discuss next steps in developing this program. The meeting will bring people together to examine and refine the tool we’re building. We’ll also talk about how to best implement the tool in a way that leads to better connections between patients and doctors, creating a culture of coproduction that allows patients to become equal partners in developing their treatment plans.

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