Hackensack Meridian Health Hackensack University Medical Center has been chosen to be one of only three pilot pediatric sites in the United States, along with Stanford Health Care in California and Wake Forest Baptist Health – Brenner Children’s Hospital in North Carolina, to participate in a groundbreaking rheumatology initiative led by The Dartmouth Institute for Health Policy and Clinical Practice and funded by the Arthritis Foundation. Working in partnership with 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 Arthritis Foundation, The Dartmouth Institute is implementing the Rheumatology Learning Health System (RLHS) — an innovative, new model for health care co-production for children, teenagers and adults suffering from inflammatory arthritis.
The RLHS aims to create an electronic “dashboard” that will bring together clinical information from electronic patient health records, information entered by patients themselves both at and in between visits with their doctors, and existing arthritis patient registries (databases of patient health information used for research and quality improvement). In this way, providers and patients/families will easily be able to see how the patient has been doing over time, and make educated decisions about their health care and treatments. The RLHS will be designed to include patient and health care provider decision support and shared decision-making tools, as well as features to support patient self-management.
“Hackensack University Medical Center is thrilled to be chosen as one of the first few pilot sites to participate in the creation and implementation of this groundbreaking initiative,” said Yukiko Kimura, M.D., chief, Division of Pediatric Rheumatology at the Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center, president of the Childhood Arthritis and Rheumatology Research Alliance (CARRA), and professor of Pediatrics at the Seton Hall-Hackensack Meridian School of Medicine. “The RLHS is truly a game-changing initiative that will ultimately improve the lives of children and adults suffering from arthritis and rheumatic diseases.”
The proposed national network will provide doctors and patients with a secure communication channel where they can coproduce a care plan in real time. Patients will be able to record their symptoms, progress and challenges, and be able to see it all in context on an electronic dashboard. They will be able to compare current data with the past, as well as see what other patients are experiencing. The RLHS will improve the patient’s quality of care through better communication with health care providers and regular, more informed health care discussions. It also aims to improve patients’ self-management of disease outside of the doctor’s office to achieve greater control of inflammation, pain and other arthritis symptoms. Patients and family members will be able to access this platform from any electronic device.
Daniela Vitelli, whose 14-year-old daughter Victoria suffers from systemic-onset juvenile idiopathic arthritis (JIA), the rarest form of JIA, will be participating as a key team member for the RLHS pilot at the medical center, helping to develop and assess the project. Diagnosed in 2013, Victoria has been a patient at Hackensack University Medical Center for the past five years. “We are excited to be part of this new project that truly elevates the patient’s voice, and ensures patients and families are working with their doctor to create a care plan,” said Daniela Vitelli.
The new platform will allow Vitelli to make daily updates about her daughter’s health, access information about other patients, and connect directly with her physician in between visits. “As a working parent having this kind of connectivity at my fingertips will be invaluable to my daughter’s treatment plan. And if the information I’m sharing helps someone else’s child or someone else shares information that helps my daughter, that’s a win-win for us. We are so grateful to the team at Hackensack University Medical Center for their support over the past five years, and we are eager to give back through this new initiative.”
“We are pleased to have the opportunity to work with Hackensack University Medical Center and the Pediatric Rheumatology program led by Dr. Kimura to begin this important and innovative program,” said Eugene C. Nelson, DSc, MPH, professor, The Dartmouth Institute for Health Policy and Clinical Practice and Principal Investigator: Rheumatology Learning Health System Program. “The Hackensack Meridian Health Pediatric Rheumatology program was selected as a pilot site based on their proven record of leadership in both improving the quality and outcomes of care for pediatric patients as well as for conducting research to improve the health of children living with serious rheumatoid problems. We are confident that their team will lead the way in demonstrating how engaging patients and families in coproducing their health care and in generating new scientific knowledge can lead to meaningful improvements in the health of children.”
The RLHS is modeled after the Swedish Rheumatology Quality Registry, which developed a similar 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.
This innovative initiative is at the forefront of quality improvement science, advancing the co-production of health care among caregivers, patients and families, explained Carol L. Barsky, M.D., MBA, chief quality officer, senior vice president of Hackensack Meridian Health and professor of medicine at Seton Hall-Hackensack Meridian School of Medicine. “By bringing patients, families and physicians together, we will ultimately achieve better health outcomes, particularly in children with chronic diseases like rheumatology, when illness impacts an entire family. It’s no longer a physician just telling a patient to do something, it’s together we are improving our health outcomes.” There is a growing consensus among health care professionals that fully engaging patients and their families in care planning and treatment decisions leads to better care experiences and better health outcomes.
“We are honored to be part of this groundbreaking program that has the power to transform treatments and improve outcomes for children with arthritis and other rheumatic diseases,” said Ihor Sawczuk, M.D., FACS, president of Hackensack University Medical Center. “Hackensack University Medical Center continues to be on the forefront of pediatric rheumatology, as we continue to pursue new and innovative treatments to improve the lives of the patients we serve.”
This proof of concept pilot network project will test the RLHS at six sites —three pediatric and three adult sites. The adult patient sites will be selected soon. The pilot project spans two years, from February 2018 to February 2020.
“The Arthritis Foundation is delighted to have Hackensack University Medical Center as part of this exceptional program,” said Guy S. Eakin, PHD, Senior Vice President, Scientific Strategy, Arthritis Foundation. “There are many barriers in health care to arriving at a care plan that meets both medical and patient goals. This pioneering work will help build tools and processes for both patients and doctors to overcome these barriers. We believe that in partnership with Hackensack, this consortium will lead the way in understanding how patients and the health care system can work together to improve health outcomes.”