acr patient voices 2017

Patients Weigh In on ACR 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.”

Patient Representative Grecia Aguilar reports, “Two doctors presented information reiterating how important exercise is for arthritis. Dr. Teresa Brady [a senior behavioral scientist with the Arthritis Program at the Centers for Disease Control and Prevention] gave interesting statistics on PWA (people with arthritis) and activity: 36 percent are getting the recommended 50 minutes of physical activity per week, 22.6 percent are insufficiently active, 41.2 percent are inactive and only 17.8 percent are doing muscle strengthening physical activity at least two days per week. According to the CDC’s 2008 physical activity guidelines, 45 minutes of moderate physical activity helps improve/sustain functions. People should be walking more than 6,000 steps a day.

“Dr. Alex McDonald [a family and sports medicine doctor and former professional triathlete] identified four types of exercise: aerobic, strengthening, balance and flexibility. He said he finds yoga and stretching to be the most effective and popular forms of physical activity.

“I personally enjoy aerobic and strength training exercise, but I tend to neglect balance and flexibility. I’ve heard that yoga is good for arthritis, but I have never tried it. Now that I’ve heard doctors talking about it, I would like to give yoga a shot and monitor how it affects my body – whether it helps my symptoms or not. I think it would be important for doctors to suggest this to their patients as well. In my 23 years of having arthritis, I’ve never had a doctor suggest yoga for my symptoms.”

The lecture also resonated with Laura Genoves. “My primary takeaway for today is personal. Very personal. I left with the goal to recommit myself to physical exercise. I’ve had three surgeries (foot, shoulders) in the last 21 months and have packed on the pounds.

“Today’s keynote talk emphasized 150 hours weekly of physical activity. Clinicians have found the term ‘exercise’ can have negative connotations to patients, so rebranding it as ‘physical activity’ gets more patients to buy in. Sold!”

Genoves also noted “the importance of breaking this down to manageable goals, such as five days a week of 30 minutes per day, or even further into three 10-minute chunks. The doctors at the keynote also pointed out the importance of two days a week of resistance/strength training.”

Says Stacy Courtnay, “Dr. Alex McDonald – he literally prescribes exercise to his patients. Writes them a real prescription with his recommendations for starting an exercise regimen. Brilliant idea!”

Taylor Gray added, “I found the session on ‘Exercise is Medicine’ to be very informative. It is nice to hear that rheumatologists want patients to be active so that they can live their best life.”

Several other sessions also grabbed the attention of our Patient Reps. Donna Dernier was intrigued with “Using Social Media to Connect With and Recruit Patients for Research Studies.” She reports, “Seventy percent of American adults use social media. There is no real difference between races or ethnic groups. Nearly 60 percent of Americans say they sought health info online. The most effective way of setting up a web page is the spoke-and-hub method, where there is a main page with general info, and satellite pages off of that. Posts with either photos or videos get the most engagement. Although there is lots of anecdotal data on the effectiveness of social media [for research], there are no real studies on the subject.”

Dernier also learned much at “The Patient/Provider Dance: Enhancing Shared Decision-Making.” She says, “The first speaker [Adena Batterman, a clinical social worker from the Hospital for Special Surgery] talked about the implicit biases both patient and doctor have when making decisions. Those include race, gender, weight, sexual preference, etc. They arise from early experience, news programming and media. The best concept to use when using shared decision-making is ‘start where the patient is.’ The best decisions are made from there.”

Rick Phillips was alarmed by what he learned. “The long-time lack of rheumatologists in the U.S. is getting worse. Legislative efforts are needed to encourage more [prospective] rheumatologists to enter the field – including allowing [more] foreign-born doctors to receive training and work-permit status in the U.S. The American College of Rheumatology is working to increase the supply of doctors and protect the residency continuation status of those foreign-born doctors in the U.S. From a patient perspective I see the terrible outcomes in underserved areas and I support this effort.”

The Patient Reps also enjoyed the show as Drs. Jonathan Kay and Roy Fleischmann duked it out in the lively and entertaining “Great Debate: Biosimilars… To Switch or Not To Switch? That is the Question.” That biosimilars are as safe and effective as the originator medication is not so much the question as will they save patients and society money? Only time will tell, the doctors concluded.

Perhaps the best way to sum up the feelings elicited by Sunday’s events came from Courtnay: “As a patient, it is mind-blowing there are so many brilliant people attending ACR to find a cure and help us lead pain-free, active lives!”

Author: Andrea Kane for the Arthritis Foundation

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