In this episode, Tiffany, Deb, Patrice, and Katie - all persons living with AiArthritis diseases - attended the 2021 European Alliance of Associations for Rheumatology (EULAR) Scientific Congress and convened several times over a few weeks to review the sessions most relevant to our community and to the work we do at our organization.
The sessions reviewed in this segment involved "patient-rheumy communication", which we were happy to see covered so much at the conference! So, while historically all of our debriefs are...
In this episode, Tiffany, Deb, Patrice, and Katie - all persons living with AiArthritis diseases - attended the 2021 European Alliance of Associations for Rheumatology (EULAR) Scientific Congress and convened several times over a few weeks to review the sessions most relevant to our community and to the work we do at our organization.
The sessions reviewed in this segment involved "patient-rheumy communication", which we were happy to see covered so much at the conference! So, while historically all of our debriefs are patient-led only, we decided for the first time to invite two rheumatologists to 'zoom bomb' our discussion. In this review, join Tiffany, Deb, Katie, and Patrice AND Al and Jeff (Dr. Al Kim - Tiffany's own rheumy - and Dr. Jeff Sparks) as they talk about the EULAR session content around communication and office visit needs (patient side and rheumy side). Shared-decision making and the evolution of visits to include discussions on comorbidities (and multi-morbidities) AND associated "holistic" approaches was also visited.
Dr. Al Kim ("Al") is from the Washington University School of Medicine and Dr. Jeff Sparks ("Jeff") is from the Harvard School of Medicine. They were invited to zoom bomb our session right as we were giving our opinions about our rheumy visits. Hey, we need all voices at the table for these conversations, right?!
Today's show is a segment from our "Go with Us!" to Conferences series, EULAR 2021 Scientific Congress patient-led debriefs, all which can be viewed in full on our YouTube Channel). It is also considered part of our Rheumy RoundsⓇ special series, where patients and rheumatology professionals unite - as equals - to discuss problems that, if solved, could improve outcomes in the rheumatology community.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Episode 64: The office visit - viewpoints from both the patients AND the rheumies!
00:53 - Katie welcomes listeners.
01:20 - Katie is joined today by recurring co-hosts Tiffany, Deb, and Patrice and rheumatologists Dr Al Kim and Dr Jeff Sparks.
01:55 - Today’s episode will focus on the challenges of communication between patients and rheumatologists during office visits.
04:28 - What does a doctor plan for in a 10-20 minute visit?
04:34 - Doctors are focusing on maximizing therapeutic use of medications, especially minimizing steroid usage.
05:07 - They then focus on health maintenance issues like cardiovascular disease management.
05:36 - Emotional aspects of living with rheumatic disease or quality of life issues for patients are highly unpredictable and difficult to anticipate, and physicians have limited tools for addressing these concerns.
08:22 - Rheumatologists feel constantly pressed for time because 20 minute appointment slots are never enough time, especially for complex cases, and often the visits don’t even receive the full 20 minutes due to outside logistical complications.
09:11 - The top priorities for Jeff are to get a full interval history of how the patient has been doing since the last visit and to make sure the current medication regimen is correct for the patient.
10:33 - Jeff hopes to get to health maintenance issues before the time expires.
11:53 - How do rheumatologists fit conversations about holistic approaches to disease management in that 20 minute appointment model?
12:07 - It’s almost impossible to do during the standard appointment, so some doctors are trying to connect patients with other resources like dietitians, physical therapists, or even yoga instructors instead of trying to provide those services themselves.
13:17 - An ideal would be to have a multi-disciplinary center where patients see all the specialists in the same day to receive holistic care, but that doesn’t really happen - at least in the American healthcare system.
14:58 - What is the ideal level of preparation for a patient, from the perspective of a rheumatologist?
15:09 - Patients who have 3-10 questions planned in advance, especially when those questions are related to medication regimens or therapeutic plans.
17:24 - Do you have issues with patient compliance with prescribed medications?
18:11 - Patient adherence is definitely an issue, and rheumatologists would rather know if you are not taking your medication and why so they can get you on a medication that will work for you.
19:48 - Rheumatologists are trying to use the term non-concordance in place of compliance or adherence because neither of those terms are consistent with shared decision making principles.
20:02 - Eroded communication between patient and provider is responsible for non-concordance because it leads patients to make their own decisions about certain medications.
24:35 - What are the biggest changes you’ve seen in rheumatology visits over the course of your career?
24:53 - The changing requirements of documentation for medical records has created an incredible amount of bureaucracy that is not helpful to caring for patients and strips away the humanity of providing medical care.
25:58 - To watch the entirety of this conversation, check out our EULAR debrief video #6 on our YouTube Channel.
26:48 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow.
26:57 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward.
Be sure to check out our top-rated show on Feedspot!
