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.
The American College of Rheumatology (ACR) reports there were currently 15,000 attendees representing 106 countries at the 2018 Annual Meeting in Chicago and more than 3,000 abstracts on exhibit. Also on tap: session after session highlighting the newest research and filling in information gaps, and the Arthritis Foundation’s Patient Reps are hard at work going to them and reporting back with their findings and impressions.
Donna Dernier attended a session called “Mechanics of PBMs and Patient Access to Medications.” PBMs, which stands for Pharmacy Benefit Managers, are the groups that work between drug manufacturers and health insurance plans that decide which drugs are in the plans’ formulary, how much they will cost and who will have access. “They are totally opaque, powerful, they use a system of rebates and fees to set the prices. They are largely unregulated,” says Dernier. Thanks to long, complicated forms that medical practices have to fill out, “Lots of practices cannot handle that workload and their patients lose out,” she says. Continue reading ACR 2018 Sessions Include Drug Pricing, OA Treatments, Diet as Therapy
“Patient perspective,” “patient-reported outcomes” and “shared decision making” are hot topics at the American College of Rheumatology (ACR) 2018 Annual Meeting in Chicago. In fact, many patients – including some of the Arthritis Foundation’s patient representatives – are attending the four-day event, which highlights rheumatology developments and draws medical professionals and researchers from around the world.
Donna Dernier, one of the Arthritis Foundation’s Patient Reps, reports that she ran into Hazel Breland, PhD, the incoming president of the Association of Rheumatology Health Professionals (AHRP), a division of the ACR. “She noticed my Patient Rep Sticker and stopped to say how glad she was to see patients involved with so many aspects of health care,” says Dernier.
Besides attending the conference, patients are getting involved in many ways. Four patients affiliated with the Arthritis Foundation exhibited posters during the Patient Perspectives Poster session on Sunday.
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.