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.
The Childhood Arthritis and Rheumatology Research Alliance (CARRA) recently announced award recipients for the CARRA-Arthritis Foundation 2018 large and small grant awards. Grants are awarded to investigators with projects that positively impact the pediatric rheumatology scientific community. Funded by the Arthritis Foundation, a total of almost $240,000 was awarded for this year’s grants. Alpha Omicron Pi Foundation (AOII), a funding partner, funded three of the grants noted below.
“These grants are important because of the rarity of these patients, “explained Guy Eakin, PhD, senior vice president of Scientific Strategy. “Research on rare conditions is difficult, and required broad networks like the partnership between the Arthritis Foundation and CARRA to launch great ideas, then turn them into active research programs. We’re very proud to work in partnership with CARRA to see these and other major scientific initiatives moving forward.”
Of the 9 grants awarded, 5 are related to systemic lupus erythematosus (SLE) studies, 3 are related to juvenile idiopathic arthritis (JIA) studies, and 1 looks at tracking localized disease with mobile apps.
LARGE GRANT AWARDEES
Two applications were selected to receive $50,000 awards:
- Kiana Johnson, East Tennessee State University: Healthcare Transition Readiness and Health Self-management among youth with Juvenile Systemic Lupus (funded by AOII)
- Kathleen O’Neil, Indiana University School of Medicine: The Relationship Between Changes in Adipokine Levels and Disease Activity in Pubertal Children with SLE
Seven new small grants of up to $25k each were awarded. Congratulations to:
- Fatima Barbar-Smiley, Nationwide Children’s Hospital: Immunogenicity of pneumococcal vaccination and impact on nasopharyngeal pneumococcus colonization in patients with childhood onset systemic lupus erythematosus
- Ingrid Goh, The Hospital for Sick Children: Patient and Caregiver Engagement in Research (PACER): Approaching for research on date of rheumatic diagnosis—a pilot project (funded by AOII)
- Joyce Hui-Yuen, Cohen Children’s Medical Center: Feasibility of Conducting Epigenetic Analysis in Pediatric Lupus B Cells
- Suzanne Li, Hackensack University Medical Center: Tracking Disease Activity in Juvenile Localized Scleroderma with a Mobile App (funded by AOII)
- Melissa Oliver, Indiana University, Riley Hospital for Children: Clinical disease manifestations associated with anti-TNF non-response in Juvenile Spondyloarthropathy
- Victoria Werth, The University of Pennsylvania: Evaluation of the reliability and validity of the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) in pediatrics
- Leandra Woolnough, Texas Scottish Rite Hospital for Children: Longitudinal Musculoskeletal Ultrasound Assessment in Juvenile Idiopathic Arthritis
CARRA will continue with the large grants program in 2019. The deadline for the next round of large grants will be March 1, 2019. Visit the CARRA website for details on other funding opportunities.
Last week more than 400 pediatric rheumatologists, researchers, fellows, patients, parents and industry representatives, along with Arthritis Foundation staff members and volunteers, came together for the 2016 Annual Scientific Meeting of CARRA, the Childhood Arthritis and Rheumatology Research Alliance. Held in Toronto, Canada, this was CARRA’s largest annual meeting to date, with participants from renowned institutions across the United States and abroad.
For nearly 70 years, the Arthritis Foundation has been committed to serving families affected by juvenile arthritis and other childhood rheumatic diseases. We’ve supported CARRA since it formed more than a decade ago, and today our partnership is stronger than ever. Both CARRA and the Arthritis Foundation are working to improve treatments and outcomes for the estimated 300,000 children in the U.S. who live with arthritis and related conditions. Together, we are creating a more unified and powerful research and advocacy community by leveraging physicians, researchers and staff from both organizations.
Continue reading Pediatric Rheumatologists, Researchers and Patients Unite in Toronto to Change the Future of Living With Childhood Arthritis
For the next five days, more than 430 people who aim to improve the lives of children with arthritis — including physicians, nurses, parents, patients, and representatives from advocacy organizations — will gather in Toronto for Childhood Arthritis and Rheumatology Research Alliance’s (CARRA) annual meeting, marking the largest gathering in the meeting’s 12-year history. Their common goal? To advance research projects that will uncover the answers to specific questions about rheumatic diseases in children.
Continue reading Groups Collaborate to Improve Future for Children Living with Arthritis