Enhancing Communication Between Patients and Health Care Teams
Pilot Network to Launch Soon
The Arthritis Foundation is currently supporting the development and rollout of four 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 the Rheumatology 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 our Collaborating 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, 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 Dartmouth Institute for Health Policy & Clinical Practice. Each participating organization has contributed to the co-design of this system and guides its path forward.