Tag Archives: understanding childhood arthritis network

Tuesday, August 13 |Arthritis Foundation

Developing the Rheumatology Learning Health System – A Patient’s Story

A big part of ourCollaborating With Patients for Better Health科学倡议已经与主要伙伴合作建立了风湿病学习卫生系统(RLHS)。RLHS的目标是通过电子仪表盘加强患者和医生之间的交流来提高护理质量。

These dashboards 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.

During the pilot phase of this project, the group created and tested paper-based versions of the dashboard at three pediatric sites. In the next phase, electronic versions of the dashboards are being created, and adult sites are being added. Jennifer is helping us make this project successful.

Jennifer is a member of the Dartmouth-Hitchcock Adult Pilot Site Team. She was diagnosed withrheumatoid arthritis (RA)10 years ago. While being treated with methotrexate, she started experiencing flares. Her doctor prescribed a short course of prednisone.

Reviewing the RLHS dashboard (like the one below) with her doctor helped them both see the visual of her joint count increasing in her RAPID3 scores. This led to her trying a new medication. Seeing Jennifer’s data at a point-in-time, and then over time, helped her and her doctor see how her RA disease activity needed a different treatment approach.

Jennifer says, “In the past, when thinking about a change in therapy, I’ve had some hesitation. It involves weighing how well I’m currently doing against things like possible side effects. What impact will the new medication have? Will I feel better? And equally important, what’s the added cost of a new medication?”

The dashboard helps focus conversations between patients and doctors. Asking patients like Jennifer the “Why” behind the reluctance or hesitation about changing medications invites a conversation about patient preferences and whatever extra help they may need.

“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 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 are thankful for the generosity of our donors for making this project possible.”

The Arthritis Foundation is working with the following partner organizations: 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.

RLHS pilot program
Friday, February 9 |Arthritis Foundation

Enhancing Communication Between Patients and Health Care Teams

Enhancing Communication Between Patients and Health Care Teams
Pilot Network to Launch Soon

The Arthritis Foundation is currently supporting the development and rollout offour specific scientific initiatives. These breakthrough initiatives are shaping the way new arthritis treatments are developed and will strengthen the relationship between you, your health care team. One of these initiatives is dubbed “Collaborating With Patients for Better Health” and the central component to this project is the Rheumatology Learning Health System.

What is theRheumatology Learning Health System(RLHS)?The RLHS is a process that builds better bridges of communication between doctors and their patients to improve health outcomes by providing a wholistic picture of a patient’s condition – from not only clinic visit data, but also data entered by patients in between clinic visits and complemented by available research data. It is the central piece of ourCollaborating with Patients for Better Health science initiative. The RLHS will be enabled by a shared electronic platform that will provide the means for this patient-provider produced health record. The complexity of the project requires that it be tested at a small number of sites to ensure that it works as planned. It will allow for new ideas and concepts to be “incubated” and tested thoroughly before growing the RLHS.

This proof of concept pilot network project will test the RLHS at six sites – three pediatric and three adult sites. So far, three pediatric sites have been selected for this project: Hackensack Meridian Health in New Jersey, Stanford Health Care in California, and Wake Forest Baptist Health -Brenner Children’s Hospital in North Carolina. The adult patient sites will be selected soon. The pilot project will span two years (from February 2018 to February 2020).

The RLHS will securely house information from 3 different sources that will be available to participants through patient and health care provider coproduced dashboards:

  • Electronic patient health records maintained at individual medical practices:This contains information obtained during a medical visit, prescription information, and any patient test results ordered by a doctor
  • Information entered by patients themselves between visits with their doctors:These are known as patient reported outcomes, and includes information about general health, how a patient is feeling, how many joints are inflamed or painful, or side effects from medications
  • Existing arthritis patient registries:Databases of patient health information typically used for research

RLHS design features will include patient and health care provider decision support and shared decision-making tools, as well as features to support patient self-management.

The RLHS is being created through collaboration between the Arthritis Foundation, theChildhood Arthritis and Rheumatology Research Alliance (CARRA), thePediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN),Understanding Childhood Arthritis Network – Canadian/Dutch Collaboration (UCAN, CAN-DU), and theDartmouth Institute for Health Policy & Clinical Practice. Each participating organization has contributed to the co-design of this system and guides its path forward.

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