Our Collaborating With Patients for Better Health science initiative has been getting more attention. The National Health Council (NHC) has asked Arthritis Foundation Senior Vice President Guy Eakin, PhD, to speak to members of the Science of Patient Engagement Symposium Planning Committee about the challenges of helping patients learn to communicate with their health care providers and become partners in the decision making process to achieve personalized care management. Continue reading Personalized Care Management to Achieve Outcomes Important to Patients
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.
Dr. Crow is All-In for What We’re Fighting For
Dr. Mary K. Crow is physician-in-chief and chair of the department of medicine at Hospital for Special Surgery in New York. She has devoted her entire career to unraveling the cellular and molecular mechanisms in autoimmune diseases. Continue reading Dr. Mary Crow, Champion of Yes in New York
A big part of our Collaborating With Patients for Better Health scientific initiative has been development of the Rheumatology Learning Health System (RLHS) in collaboration with some of our major partners. The goal of RLHS is to improve quality of care for pediatric and adult arthritis patients.
Continue reading Our Rheumatology Learning Health System Is Starting to Attract Attention!
More than 15,000 doctors, nurses, physical therapists, researchers, scientists and others with interest and/or expertise in rheumatology gathered in Chicago in late October for the American College of Rheumatology’s Annual Meeting. The Arthritis Foundation had a contingent of “patient representatives” attending to provide the perspective and voice of people living with arthritis. They fanned out to attend sessions, view and present posters and collect information about exciting new developments in the field. Here are their notes from the final sessions of the meeting.
Our team of Patient Representatives and staff hit the ground running Monday to take in a range of sessions at the 2017 Annual Meeting of the ACR/AHRP (Annual Meeting of the American College of Rheumatology/Association of Rheumatology Health Professionals).
Donna Dernier sat in on a session titled “Moving Toward Better Osteoarthritis Management.” In it, Kelli Allen, a research professor of medicine from the Thurston Arthritis Research Center at the University of North Carolina, Chapel Hill, said there is plenty of good evidence that certain behavioral therapies can work to better manage osteoarthritis (OA), but the message is getting lost in translation to the patient. Dernier reports, “The good news is there are agreed-upon strategies that work well to reduce pain and increase mobility. These include weight loss, better sleep patterns, judicious use of pain meds, increased exercise. Unfortunately, compliance isn’t always as high as doctors would like. Causes for this could be: non-shared decision making, a patient’s lack of confidence in the recommendation, or perhaps difficulty in actually getting to [physical therapy] sessions.”
The 2017 American College of Rheumatology’s (ACR) Annual Meeting (#ACR17) was in full swing Sunday in San Diego with health care professionals from all over the world in attendance, and the Arthritis Foundation had a cadre of Patient Representatives there to participate and report on what they saw and heard.
One session that received a lot of attention and praise from the Patient Reps was the Association of Rheumatology Health Professional (AHRP) keynote address titled “Exercise is Medicine: We All Need to Say the Same Thing.”
There is growing evidence to support the value of patient engagement in research and healthcare activities. Case studies from drug and device development, academic research, and other healthcare sectors cite the impact of engaging expert patient partners in the design, conduct, and dissemination of research, discovery, and delivery initiatives. Encouraged and facilitated by entities like the Patient-Centered Outcomes Research Institute (PCORI), academic and clinical professional societies are beginning to adopt more patient-engaged strategies as well, like the inclusion of patient representatives at annual meetings and scientific conferences. In 2017, the Arthritis Foundation is partnering with the American College of Rheumatology (ACR) to pilot an Arthritis Foundation Patient Representative program (#AFPatientReps), bringing a cadre of ten highly involved, engaged patients to attend and participate in #ACR17, the ACR/ARHP annual meeting.
The Arthritis Foundation champions the fight against arthritis and we are excited to have thought leaders, such as Rowland W. (Bing) Chang, MD, MPH, as a partner in this fight.
Dr. Chang is a rheumatologist, epidemiologist and health services researcher. He was named chair of the Arthritis Foundation’s board of directors in November 2016.
The Arthritis Foundation is excited to participate in #ACR17, the Annual Meeting of the American College of Rheumatology. This year, the 2017 ACR Annual Meeting is taking place Nov. 3-8 in San Diego, California! Close to 17,000 rheumatologists, rheumatology health professionals, fellows-in-training, and exhibitors from more than 100 countries are expected to attend to discuss the latest scientific advances, clinical issues, professional development, and more. We are proud to be amongst the thought leaders in the field of rheumatology.