RheumyRounds: The Good, The Bad, & The Ugly - Improving Office Visit Communication

AiArthritis Voices 360 Main, Full Episode 80

Part of our RheumyRounds Series

Air Date: December 4th, 2022

This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.


Welcome to another Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we are creating an e-book with a collection of all your stories. 


During this episode, Kerry Wong and Tiffany Westrich-Robertson share their experiences as patients and Dr. Lisa Zickuhr shares her perspective as a physician. Together on this episode, we highlight the importance of communication, compassion and openness in bettering patient-doctor relationships. 


If you are interested in sharing your rheumy/patient office experience for our new Ebook, submit them below!



Episode Highlights: 

  • AiArthritis is creating an Ebook with a collection of patient stories of the good, the bad and the ugly to study these interactions and help improve patient care.
  • Kerry, Tiffany and Dr. Lisa Zickuhr share their experiences with undiagnosed and misdiagnosis and patient care 
  • How a doctor can approach a patient who they are unable to diagnosis in the beginning stages 
  • Patients need to be receptive to a physician's message as much as a physician needs to be empathetic to the patient
  • The importance of knowing what to do next or monitor for if you’re tests come back negative so the patient doesn’t feel left without any direction
  • Information sharing between the doctor and patient can be the difference between a bad and good interaction even without diagnosis


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RheumyRounds is sponsored by Bristol Myers Squibb.


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).  Be sure to check out our top-rated show on Feedspot!


Patients OR Rheumatologist Professionals: Submit YOUR Good, Bad, or Ugly Story!

Who is at the table?

Tiffany Westrich-Robertson, CEO AiArthritis and person living with non-radiographic axial spondyloarthritis,  Kerry Wong, Float Like a Buttahfly/sarcoidosis, and Dr. Lisa Zickhur, Washington University Rheumatology

LISTEN TO THE FULL EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 

Click here to pull up a seat!

All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode, where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process).


After each show airs we  spin off the conversation into many discussions over various formats, which we now call #360its (new in 2022)!

 

You can find, follow, and listen on Podbean, Spotify, Apple Podcast, or where ever you do podcasts. Please follow, rate, and subscribe to the show, then share it with someone. Be sure to check out our top-rated show on Feedspot!

View Full Transcript

And now, let's 360it!

The main Sunday episode is where we "put the topic on the table," but it's not where the conversation ends!  Now we spin off the conversation into different discussion segments. Below you will find several 360its. Some are videos from the main episode, while others are audiograms (soundbites).


Soon we will be launching additional 360its, which will build on these conversations. We'll hear from patients in the United States, Canada, and Australia who are here to help you through the transition to biosimilars. We are also planning a WATCH PARTY, where we will play back segments of webinars that aim to teach you more about biosimilars - and you'll have your fellow patients at AiArthritis to talk through it all with you!  Stay tuned.

*New* 360it SPIN-OFF TWITTER POST!

Join Kerry on her Twitter page as she discusses this conversation in greater detail!


Check out her Twitter Page @Buttahflyk and search the hashtag #SarcChat to find additional conversations like this!

SHORT VIDEO CLIPS FROM THE MAIN EPISODE

360it Short Video #1

How to Improve a Doctor-Patient Experience

Autoimmune diseases are complex and unlike other diseases, there isn’t one definitive test to give the patients a diagnosis. To improve doctor-patient communication, both sides need to listen and hear each other. Patients should be prepared for visits with questions, symptom tracking, photos and doctors should listen and provide explanations for their interpretations to remain on the same page.

360it Short Video #2

Symptom Tracking

The most successful doctor office visits are where both sides show up with an agenda. The patient comes with their information on the symptoms they’ve been tracking and questions they may have and the doctor comes with medical knowledge, research and the ability to fully listen to the patient.

360it Short Video #3

The Importance of Good Communication at Office Visits

There are many challenges with diagnosing an autoimmune disease therefore effective communication between doctors and patients is very important. Patients need to be receptive and partner with their doctors to find the best path forward, even if the diagnosis isn't straightforward. Achieving a diagnosis is an important objective for both patients and doctors, however, it is essential to have a partnership in order to attain it.

360it Short Video #4

Bad Doctor Experience

It is okay to walk away from a doctor when you feel like that patient-doctor relationship isn’t working for you. Patients need to be their own advocates and find the best partnership with a doctor so they can work together to not only get the correct diagnosis but also the most effective treatment plans.

SHORT AUDIOGRAMS FROM THE MAIN EPISODE

360it #1  Setting Up Time to Meet with Your Doctor for All Questions

Is it okay to schedule follow up doctor visits to ask all of the questions you have weighing on your mind? Dr. Zickuhr shares how important these visits are to provide answers & clarification.

360it #2 EBook: the Good, the Bad, the Ugly

Do you have a good or bad doctor office / patient experience that you would like to share? AiArthritis is creating a Good, Bad, & Ugly Ebook of patients' stories so we can improve doctor office visits.

360it #3 Patients Need to Ask Questions

Patients must have confidence to ask the questions that are weighing on their mind when meeting with their physician so they can partner with their doctor to find solutions. 

360it #4 Improving Patient and Physician Communication

How do we improve communication between patient and doctor? Dr. Zickuhr shares how important it is for both patient and doctor to work together on clarifying information and listening to one another.

360it #5 Importance of Good Information Sharing

Having a doctor share their opinions and explain why they have come to that conclusion or why not can help to avoid leaving the patient in the dark. Good information sharing is key to good overall experiences.

360it #6 What Do We Do Next?



Instead of leaving the patient with no answers, how can physicians help the patient plan what to do next without invalidating that something is wrong? 

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.


  • Facebook: @TiffanyAiArthritis
  • Twitter: @TiffWRobertson
  • LinkedIn: @TiffanyWestrichRobertson


Kerry Wong

After too many years with doctors who either didn't believe her or couldn't figure things out, Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. Her primary goals are to help other chronic illness warriors know they are not alone in their experience and to help those who care about these warriors to get a better understanding of what that experience entails. Kerry currently volunteers as New York State Advocacy Chair and Platinum Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. She has also advocated with the American College of Rheumatology, Support Fibromyalgia Network, and Rare Disease Legislative Advocates, and assisted on numerous projects with International Foundation for Autoimmune & Autoinflammatory Arthritis. . Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities. She has shared her patient experience in speaking engagements across the country and virtually, and hosts a monthly sarcoidosis Twitter Chat (#SarcChat). Most recently, she has become a columnist with Sarcoidosis News, sharing her experience and insights, inviting others to Float Like a Buttahfly with her.


● Website: https://bit.ly/FloatLikeAButtahfly

● Facebook: https://www.facebook.com/floatlikeabuttahfly

 ● Instagram: @buttahflyk 

● Twitter: @buttahflyk 

● LinkedIn: https://www.linkedin.com/in/kerrylwong/

Guest: Dr. Lisa Zickuhr, Rheumatologist, Washington University 

Dr. Zickuhr is a rheumatologist and clinician educator who devotes half of her time to caring for patients with autoimmune rheumatic diseases and half to educating physicians in training. Her clinical interests lie in treating patients with systemic lupus erythematosus and other related conditions. She also cares for patients using telemedicine and is interested in the best ways to teach health care professionals how to communicate with and examine patients virtually.



https://wuphysicians.wustl.edu/for-patients/find-a-physician/lisa-a-zickuhr 

@washumedicine (instagram)

@WUSTLmed (twitter)

Pull up your seat at the table

Now it's YOUR TURN to join the conversation!

What do you think about this episode?

We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community.  Better yet, through these conversations we can start working and developing solutions.


We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!


Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)

Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!

Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!

Relevant Episodes & Projects

    • RheumyRounds is a special AiArthritis Voices 360 Series that unites patients and rheumatology professionals 'at the table' - as equals - to discuss important community topics that, if solved, would improve communication and positively impact outcomes. RheumyRounds is currently sponsored by Bristol Myers Squibb. Learn more and get involved!

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