An ArthritisPower Patient Governor attends rheumatology conference in Maui
What is it like for a patient to “crash” a rheumatology conference organized for doctors and scientists? I recently sat down with Carole Wiedmeyer, who attended the Rheumatology Winter Clinical Symposium in Maui during February 2016, to learn about her experience. Carole, a self-employed researcher with rheumatoid arthritis (RA), has logged countless hours as an advocate and Patient Governor for the ArthritisPower™ Patient-Powered Research Network that CreakyJoints launched in 2014. ArthritisPower allows patients to track their symptoms and treatments using the free mobile app on a smartphone or web-based equivalent on a computer while simultaneously participating in arthritis research. ArthritisPower was created with support from the Patient-Centered Outcomes Research Institute (PCORI) in partnership with researchers at the University of Alabama at Birmingham (UAB), notably rheumatologist Jeffrey Curtis, MD, MS, MPH.
Carole lives in Hawaii and offered to represent CreakyJoints at the symposium to let doctors know about ArthritisPower and to hear the latest news in rheumatology research.
What struck you about the conference?
Clearly, there is still a lot to learn about rheumatologic conditions. No one’s cured anything yet—but the 150 or so doctors attending the conference were visibly interested in learning the latest so they could get the best possible outcomes for their patients.
And there was a lot to learn! I gained an appreciation for the breadth of information that rheumatologists need to know, and the wide array of conditions that they treat.
Because I was part of a pilot patient panel for RA treatment guidelines, I was quite interested to learn that some doctors are frustrated by their lack of role in the development of treatment guidelines. One presenter said that the GRADE methodology used to develop the guidelines shuns them in favor of methodologists who are experts in the GRADE process. Another complaint about the new RA guidelines was that the strong recommendations are not necessarily based on the highest quality evidence.
You’ve been a big part of the RA shared decision making study that we’re doing with Yale. Were many doctors interested in this? What other topics did conference attendees seem to be interested in?
In one-on-one conversations, I found many doctors were concerned about doctor-patient communication, including risk communication. There’s frustration over patients who will not consider taking medications that would very likely benefit them, but might rarely result in a dangerous side effect. One doctor talked about a “risk-risk” approach to emphasize the risk of doing nothing [to treat their condition], instead of a “benefit-risk” approach.
Other doctors expressed interest in related issues having to do with patient psychology. One presenter talked about routinely providing referrals to psychiatric specialists who treat chronic patients. She noted that patients are grateful for the referral information, and appreciate realizing that “It’s not just me”—they are not alone in confronting depression and anxiety related to their conditions.
There was also concern about adherence to triple therapy, or any case where a patient is taking multiple medications. There is some exciting research now being done in clinical trials with new medicines, and biosimilars are highly–yet cautiously–anticipated. There was also some attention given to microbiome-related research.
There was a sobering session on the future of clinical practice, citing the need for more coordinated care across specialties, reducing costs, and dealing with pressures from insurers to keep costs down. Rheumatologists definitely see challenges ahead for their practices.
What topics interested you and what did you learn there?
Personally, I was interested to hear about vaccinations. The presenter said that, overall, doctors are not very effective at making sure patients get vaccinated for flu and pneumonia each year. Even when they try, it’s a hard idea to sell to patients. Plus, live vaccines—like for shingles—cannot be administered to patients who are on certain therapies, like biologics. However, gaps when a patient is switching from one therapy to another could be used to administer live vaccines. An inactive shingles vaccine is in the works, and research is currently being conducted by our partners at UAB on the safety and effectiveness of using the live vaccine in patients on anti-TNF biologics.
I also realized how much RA dominates the research and treatment landscape. Lupus in particular needs more good options for patients, as do psoriasis and psoriatic arthritis. I learned a new term—“rhupus”—for people with rheumatoid arthritis and lupus. A term I liked that applies across rheumatological conditions was “deep remission.” It means a consistent long-term remission, when a patient’s condition is well managed and symptoms are under control.
There was a fair amount of discussion about managing the risks of nonsteroidal anti-inflammatory drugs (NSAIDs) and steroids throughout various sessions. Of note: The Food and Drug Administration (FDA) strengthened the NSAID warning regarding heart and stroke risks. For these types of medications, the admonition to “take the lowest amount for the shortest period of time” doesn’t really work. As one presenter put it: “What’s the shortest amount of time for a chronic disease? Forever.”
Did doctors at the symposium know much about CreakyJoints and ArthritisPower?
Many were familiar with CreakyJoints, and those I spoke with one-on-one were interested in ArthritisPower once I explained it. Some were quite interested in getting more involved in patient education or advocacy.
What topic wasn’t talked about that you know is important to many patients?
I did not attend every single session, but I did attend most of them during the days I was there and I didn’t really hear much about fatigue. Fatigue is a big deal for many patients with arthritis, so it was surprising not to hear more talk about it. I think that we have an opportunity to put fatigue in the spotlight with ArthritisPower studies and CreakyJoints advocacy.
There was the occasional reference to diet, but only as part of the discussion of a larger topic. Diet seemed of particular interest in reference to microbiome research that’s being done.
Do you recommend patients attend conferences like this?
Absolutely. But, as a patient, it would be much better to attend as a presenter or an exhibitor. Since I was not presenting a poster or a session about research findings, I was limited in my ability to get the message out about CreakyJoints and ArthritisPower. It would also be nice to be there with other patients, both for the company and for the ability to tag team. It was a very long, data-rich conference, and it would be nice to have someone else help cover the sessions.
Any final thoughts about this conference?
First, I would like to thank the symposium organizers and attendees for their warm welcome and engaging conversations at the event.
In the end, I’m left with the sense that we have a lot in common with the doctors who treat us.
Just like us, they:
- Want better treatments.
- Want patients to be aggressively treated so that they can have as much function as possible.
- Are frustrated by the cost of care and the role of insurance companies in limiting access to treatments.
- Want more of a role in developing recommendations for how research should be translated into treatments.
- Want better communication with patients.
Thank you, Carole, for sharing your insights about the Rheumatology Winter Clinical Symposium. We’ll work on having something from ArthritisPower to present in upcoming conferences.
Looking for more ways to get involved in research? Check out www.ArthritisPower.org.