This past month, CreakyJoints attended EULAR (the European League Against Rheumatism), the second largest arthritis medical and scientific conference in the world, to represent our community and to learn about new advances in arthritis care and research. While this was our 8th year attending EULAR, it was the first year we were joined by a rheumatology fellow whose role was to attend the presentations, medical sessions and fortunately, help us to decipher the science.
We sat down with Dr. Sarah Doaty, MD, who is a second year clinical fellow at the University of California at Los Angeles (UCLA), and asked her about her experience attending EULAR, including her impressions of the conference, especially as it relates to our community.
Seth Ginsberg (CreakyJoints): Dr. Doaty, it’s great to have had the chance to get to know you. Please tell us a bit about yourself.
Dr. Sarah Doaty, MD: Thanks, Seth! It has been a pleasure getting to know the CreakyJoints team! I attended medical school and completed a Primary Care residency at the George Washington University. During my time in DC I focused my efforts on learning to care for underserved populations and as a result, developed an interest in health policy. After working as a hospitalist in Anchorage, AK for year, I started a Rheumatology fellowship at UCLA, where I’ve had the opportunity to work with and learn from many remarkable Rheumatologists, including Dr. Dan Furst.
As a fellow, I’ve had the opportunity to volunteer with the American College of Rheumatology (ACR) and currently serve as a member of the Fellows-in-Training Subcommittee and the Government Affairs Committee.
In a few weeks, I’ll be leaving Los Angeles and moving back to Alaska to practice Rheumatology with the Alaska Native Tribal Health Consortium.
CJ: What are your specific interests within rheumatology?
Dr. Doaty: I’m interested in improving access-to-rheumatologic care, especially for rural and disadvantaged populations, and enhancing health policy education and engagement among young rheumatologists. I believe that my generation of rheumatologists is really interested in working with patients and lawmakers to develop policies that will help us to adapt to the changing healthcare environment and improve the way we deliver care. Substantial advances have been made in the treatment of arthritis. As the science continues to advance, our generation of rheumatologists will need to continue to work to ensure that patients have access to these treatments
CJ: What was your impression of EULAR 2016?
Dr. Doaty: I was very happy to see how patient-friendly the meeting was. Patients were at the center of so many presentations, studies, and discussions. To that end, I was most impressed by the dedicated focus on the patient perspective, the work of patient organizations throughout Europe, and their presence within PARE (the National Organizations of People with Arthritis and Rheumatism, a standing committee of EULAR).
As doctors, most of the professional meetings we attend focus on how the science and the medicine create an impact on patients (how doctors and scientists affect patients). The PARE track within ‘EULAR Village’ at the congress really created a space (literally and figuratively), for open dialogue about the patient experience, the role of patients in the management of their health and the impact that patients have on medicine and science (how patients affect doctors and science).
The EULAR Congress really opened my eyes to the importance and impact of patient reported outcomes research and shared decision-making.
CJ: What was the session or poster that struck you as most interesting for patients?
Dr. Doaty: Toby Bellerby from the UK presented a poster on her project, called “What do I want to talk about?”. She created an area in her rheumatologist’s office waiting room with pads of paper and pens and a sign that read “What do I want to talk about?”. Patients were encouraged to use their time in the waiting room to prepare for their visit by writing down their questions and concerns. Patients and doctors reported that this helped to better guide the conversation in the exam room and ensure that the patient’s needs were addressed.
I really liked this project for a few reasons. First, it is a patient directed initiative that stems from the patient experience and helps to overcome a common barrier. Second, it is low-cost and very easy to implement or modify for each patient or doctor’s office. Third, it enhances the patient-doctor relationship by highlighting the patient’s agenda at each visit and finally, it encourages patients to think about what they can do to help others overcome common challenges and to share those ideas with others.
CJ: What other interesting things did you learn last week?
Dr. Doaty: One of the most impactful sessions of the week for me was the PARE abstract session. This session focused on the patient-doctor relationship from a patient perspective: what we as rheumatologists are doing right, what we can do better, and how we can work together to overcome certain barriers.
The session highlighted the importance of communication and understanding that the patient’s goals for the visit are often very different than those of the physician. Recognition of these differences allows us to better communicate, understand and incorporate both parties’ views into a treatment plan that data shows will be more effective than a traditional physician-directed plan.
CJ: What message(s) do you have for patients living with rheumatic diseases?
Dr. Doaty: Science has brought us a long way in the past 50 years. We now have medications that are changing patients’ lives – in both longevity and quality of life. The way we diagnosis, monitor and treat rheumatic disease has become increasingly complex. This complexity has the potential to further divide doctors, who are focused on the science and the medical aspects of the care, from patients who are concerned about the medical aspects, but are also impacted by the more practical, social and emotional effects that newer treatments have on their lives. Data now shows what patients have always known: treatment plans only work if patients and doctors are working toward a common goal. To improve upon the science and treatment outcomes, we must work together as a team. Your experience, your voice, your participation in clinical research and patient organizations is what will drive the future of rheumatology.
CJ: Why is it important for patients to get involved with 1. Advocacy?
Dr. Doaty: Great question, Seth! Many lawmakers don’t know much about Rheumatic diseases or the challenges that patients with arthritis are facing. Your perspective, your voice and your vote, matter. By sharing your experiences and your opinions with your lawmakers, you can help them to see how the policies and regulations that they create are impacting your life and the lives of patients nationwide. Much like in the patient-doctor relationship, patients need to play an active role in the design and implementation of policies and regulations that impact their lives. Your voice and your vote are more powerful than you think.
CJ: 2. Research?
Clinical data drives discovery and innovation of new treatments, but without patients, there is no data.
Unfortunately, patient data used in large trials is not always representative of the patient population as a whole, with minority and rural populations often underrepresented. If patients in these groups actively seek out and enroll in clinical trials and patient reported outcomes research, we will have data from a larger patient population, which will provide better insight into how well our treatments work for everyone.
Many patients might not be sure how to get involved with research or may be hesitant to do so. I recommend the following:
–Talk to your doctor about ongoing research trials in your area or look online to find clinical trials that are enrolling patients around the country.
–Talk to other patients who have been involved with research to learn about their experiences and whether or not it would be a good fit for you.
Participation in research can be an empowering experience. As an individual, you have the opportunity to contribute to a body of science that will help to improve or even save the lives of patients all over the world.
CJ: What do you wish your patients did that they don’t always do?
Dr. Doaty: Ha! We should ask my patients the same question! Here are a few of my suggestions:
–Make a list of goals and questions for the encounter
–E-mail or call me between visits if there is a significant change in their health, such as an infection, flare or medication side effect
–Share with me major life events- good and bad, and the impact that these are having on disease activity and management
–Provide honest feedback on which aspects of our treatment plan or encounter aren’t working
–Talk to lawmakers about how certain policies in the US healthcare system are impacting their lives
–Engage me in conversations about how we can work together as a team to advocate for improvement in care for all patients
Thanks again for this great opportunity, Seth. It has been a pleasure getting to know patient advocates from all over the world and learn about the amazing work they are doing. Thank you to the CreakyJoints team for all that you do to improve the lives of patients with arthritis.