All posts by Arthritis Foundation

UCLA Fellows: Meet Samira Nazzar and Stephen Wong, Jane Wyman Foundation-sponsored Fellows

Because access to care is not always guaranteed, the Arthritis Foundation has been working to help close the gap on the nation’s rheumatologist shortage through our fellowship initiative. Through generous donations from the Jane Wyman Trust, we have been able to fund two pediatric fellowships at the University of California, Los Angeles (UCLA). Continue reading UCLA Fellows: Meet Samira Nazzar and Stephen Wong, Jane Wyman Foundation-sponsored Fellows

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

A big part of our Collaborating With Patients for Better Health scientific initiative has been creating the Rheumatology Learning Health System (RLHS) in collaboration with major partners. The goal of RLHS is to improve quality of care by enhancing communication between patients and their doctors through electronic dashboards.

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 with rheumatoid 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.

Paying It Forward to Solve Osteoarthritis

Osteoarthritis (OA) isn’t just a disease that affects older adults; it’s the most common form of arthritis, affecting more than 30 million Americans. Anyone who injures or overuses their joints, including athletes, military members and people who work physically demanding jobs, may be more susceptible to developing this disease as they age. Continue reading Paying It Forward to Solve Osteoarthritis

Meet Matthew Clark: One of Our Newest Foundation-Sponsored Fellows!

Because access to care is not always guaranteed, we’ve been working to help close the gap on the nation’s rheumatologist shortage through our fellowship initiative . In June, we announced four new fellowship awards for 2019. One of those grants was offered to Vanderbilt University Medical Center, which recently announced a three‑year pediatric fellowship to Dr. Matthew Clark. Continue reading Meet Matthew Clark: One of Our Newest Foundation-Sponsored Fellows!

Meet Vin Sivan Pillai: One of Our Newest Foundation-Sponsored Fellows!

Because access to care is not always guaranteed, we’ve been working to help close the gap on the nation’s rheumatologist shortage through our fellowship initiative.  In June, we announced four new fellowship awards. One of those grants was offered to SUNY Downstate Medical Center, which has been awarded to Dr. Vin Sivan Pillai.

Already serving a very diverse community, the SUNY Downstate program is also addressing the needs of young adults transitioning from pediatric to adult care. This innovative program, involving rheumatologists, urban health planners, the city of Brooklyn and the Arthritis Foundation, seeks to understand the needs of young adult patients.

Dr. Pillai will be a welcome addition, with a very diverse medical background spanning several countries. He explained his journey: “I grew up in Dubai in a very multicultural environment. I decided to go to medical school in India to get some real-world experience. During my time there, I had to learn two new languages to converse with my patients. I worked in underserved areas where my patients didn’t have easy access to health care.”

Dr. Pillai moved to the UK for his residency, hoping to get into endocrinology. After completing his training, he decided to pursue better opportunities in the U.S. During his residency at Danbury Hospital in Connecticut, Dr. Pillai got interested in rheumatology.

“I saw some really interesting cases while on the rheumatology rotation. These cases were complex and required collaboration with providers from other fields,” he says.  “Not only would I get the chance to sharpen my knowledge to become a well-rounded rheumatologist, but I would also get to work with providers and caregivers from other fields. I cherish the opportunity of establishing meaningful long-term relationships, and there is nothing more rewarding than seeing my patients make progress.”

“My training in India, the UK and America have given me a strong sense of cultural awareness, which helps me connect with my patients on a much more personal level,” he explains. “After completing the fellowship, I hope to work at a teaching hospital.”

Thanks to the generosity of our donors, Dr. Pillai is just one new rheumatologist who’s helping bridge the gap in the shortage of much-needed specialists.

 

JAC Research Sessions

Kids, teens, young adults and their families from across the country are landing in Minneapolis for the second of two National Juvenile Arthritis (JA) Conferences the Arthritis Foundation is hosting this year. This week’s conference offers a variety of events and informational program tracks focused on education and connecting with others, including two research sessions that will take place on Friday, August 2. Continue reading JAC Research Sessions


Spring 2019 Childhood Research Grants Announced

We recently granted $232,357 to childhood arthritis research. Grants are funded through the Childhood Arthritis and Rheumatology Research Alliance (CARRA). Small grants were given to pediatric rheumatologists and fellows; more awards were given to third-year fellowship students. The following projects have been funded from July 1, 2019, through June 30, 2020. Continue reading Spring 2019 Childhood Research Grants Announced

What’s Important to Juvenile Idiopathic Arthritis (JIA) Families: the JIA Voice of the Patient Report

Arthritis patients have spoken: “We want safer, more effective, easier-to-use and less-painful-to-administer treatments that are less likely to cause potential long-term side effects. We need solutions to the challenges of dealing with comorbidities and multiple treatment changes.” Continue reading What’s Important to Juvenile Idiopathic Arthritis (JIA) Families: the JIA Voice of the Patient Report