Positive Signs for Rheum Patient Activism

Seeing is believing: rheum patient activism

Last Friday, a meeting of the Emirates Society for Rheumatology (ESR) in Abu Dhabi heard a presentation from Katrina Thornley who has had Juvenile Rheumatoid Arthritis (JRA) for 27 years (since age 2). Dr. Mustafa Al Maini, President of the ESR, comparable to our ACR (American College of Rheumatology), called it a milestone for doctors and patients. He praised the concept of collaboration because by “pooling our knowledge and resources we aim to forge stronger links between healthcare professionals and patients that will in turn improve the management of arthritis…”

Dr. Al Maini said, “Rheumatology patients will be invited to speak and listen at seven further ESR meetings taking place across the UAE throughout the rest of the year. The events traditionally target practicing rheumatologist but have been expanded by the ESR to give primary care doctors and non-rheumatology specialists the chance to learn about the latest treatments for a range of rheumatologic diseases. This scheme is part of our new medical education programme that means whenever ESR meets we will make a slot available for patients to interact with rheumatologists. ”

Sound exciting? Keep reading!

Rheum patient activism comes to life

This spring, I almost fell off my chair when I read an article about rheum patient activism by Pat Rich in the Canadian Health magazine about Linda Wilhelm. I felt like the author was writing my very thoughts. I’ve argued for some of the exact scenarios. It was astonishing.

Linda’s advocacy work began by “identifying a failure in the health-care system to recognize just how serious the disease can be…” After years of advocating, she went “beyond traditional patient activism and is involved in actually helping researchers ensure that their work is meaningful and helpful for patients.”

Rich writes, “There is a growing recognition throughout the medical research community that patients are not only the final beneficiaries of medical research but also important players in determining what research gets done and how. Rather than just recording laboratory results of what a test or treatment can do clinically, more and more there is a requirement that new investigations produce outcomes that matter to the patients themselves.”

Successful rheum patient activism needs supportive doctors

Today, in another positive sign for rheum patient activism, a rheumatologist commented on our most recent discussion about swelling. The debate about whether visible swelling is required for RA to be active, painful, or destructive is one of the most crucial ones in rheumatology today. There are doctors on both sides, but for the most part, the issue unfortunately separates doctors and patients.

 So of course we welcome input of a doctor who wants to converse with us! Dr. Akerkar said:

“Health care social media has been a very good eye opener for me in recent times. It give me the patient’s perspective; the story on the other side of the table. It has helped me improve on many counts. Take this voice of RAers to such heights that it falls all the Rheumie’s ears. It’ll tell them what books don’t. RAers should be promoting the good Rheumies they have met. Wasting time in diagnosing inflammatory arthritis is criminal as the time wasted is function lost in the long run…”

Postblog: This was part of a discussion about RA swelling with Debbie who said that even after a trip to the ER, swollen hands, a 2 day hospitalization, and an elevated CRP,  her rheumatologist says her “hands just are not swollen enough” to be treated. She left in tears because her grandmother lived in a wheelchair due to RA.

Do patients in the US have similar needs to participate?

Recommended reading

• Two Types of Progress & Shared Responsibility
• Alice Goes to Jacksonville: Mayo Clinic Center for Social Media
• Using CRP in Criteria for Rheumatoid Arthritis Clinical Trials