Rheumy Rounds™ Pilot Episode: Office Visit Communication Obstacles

#RheumyRounds is a pilot break out series of AiArthritis Voices 360 

Full Episode Episode #13
Air Date: February 9th, 2020

Join your patient co-hosts, Tiffany and Kelly, as they are joined by roundtable guests - rheumatologist, Dr. Alfred Kim, and graduate researcher Jerik Leung -as we dive right into the heart of the issue - communication barriers that currently exist between patients and their rheumatologists in the office setting. 

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Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.


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The establishment of Rheumy Rounds™ is based on patient-reported needs to enhance communication and relationship management with their rheumatologists, so issues they deem important could be addressed in a manner that would lead to improved outcomes. All Rheumy Rounds episodes will unite two very important stakeholder groups - the rheumatology community and the patient - in a roundtable discussion where both parties are on equal levels discussing important topics that, if solved, can improve outcomes. 

It is a break out, pilot series established by the International Foundation for Autoimmune & Autoinflammatory Arthritis and in conjunction with our award-winning AiArthritis Voices 360 talk show (podcast).


Show Notes: Episode 13 Rheumy Rounds Pilot Episode: Office Visit Communication Obstacles (Part 1)

 

00:52 - Tiffany welcome listeners to the pilot episode of Rheumy Rounds


01:15 - Tiffany is joined today by co-host, Kelly


01:36 - Tiffany identifies her diagnoses


01:58 - Kelly explains her diagnosis


02:35 - Tiffany welcomes today’s guests: Dr. Alfred Kim and Jerik Leung


03:01 - Kelly introduces Dr. Kim and Mr. Leung and explains their work focus in the AiArthritis Community


04:54 - Tiffany explains the goals of the Rheumy Rounds Series


07:04 - Today’s Topic: Improving Doctor / Patient Communication


08:12 - Jerik’s research showed that patient goals did not always align with the physician’s goals, especially relating to medications and side effects


09:20 - Patients who are not connecting with their doctor and aren’t understood by their family will often seek out online communities so that they feel understood by someone 


13:05 - Dr. Kim says the primary goal of rheumatologists is to determine what is actually going on with the patient. Are additional testing or imaging studies necessary? Are the notes from the previous doctor or patient provided information enough?


13:54 - Practicing Rheumatology is somewhat similar to practicing psychiatry in that there are usually not clear cut answers from test results.  The physician has to review as much information as possible to arrive at a correct diagnosis.


14:50 - Rheumatologists must also prepare to have a difficult conversation with patients if the diagnosis doesn’t align with what they have been told previously or what they believe or don’t believe they have


15:13 - Sometimes patients arrive at a new doctor with incorrect information in their chart because a previous doctor had to use a certain diagnosis - even if it wasn’t the correct one - so the patient could get access to a needed medication


17:13 - Rheumatologists primarily base treatment plans on symptoms, rather than diagnosis. This is different than 99% of medicine practice and is confusing for patients.


20:08 - 80% of health outcomes are determined by social determinants, and only 20% is based on medical care


20:14 - Social determinants are the variables of how your living and working situation influences your health (income, education, social support, addiction status, employment status, etc.)


20:40 - Physicians have no meaningful training in influencing social determinants in their patients


23:30 - Patients really benefit from having collaboration between their doctors and having someone coordinate the services they need - both medical and social determinants - all in one place


29:45 - Physicians must translate colloquial information from the patient to technical information so that it will align with their training and then translate it back to colloquial format so the patient will understand it and be able to explain it to their social support network


30:18 - Physicians receive no formal training in communicating effectively with patients


32:33 - Patients should document concerns as they go so that they can communicate them effectively with their physician 


32:50 - Shortened appointment times, electronic medical records requirements, and overwhelming workloads all contribute to emotional burnout among physicians who want to provide emotional support for patients


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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).



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Your Co-Hosts & Guests: Who is at the table this episode?

Tiffany Westrich-Robertson

Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels. 


Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.


Jerik Leung 

Jerik Leung is a graduate student in the Master of Public Health Program at Saint Louis University, College for Public Health and Social Justice (SLU CPHSJ) focusing in behavioral science and health education. He has been involved with lupus-related health research for the past four years, beginning during his time as an undergraduate student at Washington University, where he met Dr. Alfred Kim and conducted a senior thesis project in medical anthropology seeking to understand the primary obstacles of living with lupus from the patient perspective. This work and the necessity of the patient voice in guiding research and treatment priorities has formed the basis of Jerik’s current work with Dr. Kim and Dr. Elizabeth Baker, Professor of Behavioral Science and Health Education at SLU CPHSJ, on understanding and developing interventions related to social support and impact on quality of life among those living with lupus using a community-based approach. After graduate school, Jerik intends to continue on a career path in health sciences research with a specific focus in autoimmune diseases.


Kelly Conway

Kelly is a speech-language pathologist, author/blogger, and a patient advocate. She has been living with autoimmune arthritis since age 14 but wasn’t formally diagnosed until age 32. That diagnosis has changed more than 5 times over the past 18 years. Through social media, she connected with fellow patients and co-founded the International Foundation for Autoimmune and Autoinflammatory rthritis. She has represented her state of Pennsylvania on Capitol Hill for the American College of Rheumatology multiples times, and speaks of the patient perspective at medical/pharmaceutical conferences. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy.

Dr. Al Kim

Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim’s research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE.

Twitter: @alhkim

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