Diversity Equity Inclusion & Accessibility
AiArthritis Voices 360 Main, Full Episode 78
Air Date: Oct 2, 2022
This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.
DEIA : Diversity, Equity, Inclusion, and Accessibility. Each of these elements that affect patients daily should be considered when thinking about patient diagnosis, physician care, treatment plans, research, lifestyle choices, and societal inclusion.
In this month’s episode, we join Tiffany from AiArthritis, Estela Mata from Looms 4 Lupus, and Charis Hill - disability activist, as we are going to be discussing this topic. Each co-host has their own story to share, their experience with DEIA, and how it has impacted their patient journey as well as our community. Join us as we just scratch the surface in this important, but necessary, topic.
Episode Highlights :
- What is DEIA?
- How diversity affects representation in clinical data and can lead to a delayed diagnosis
- How equity and the accessibility patients may have to physicians, treatment types, providers, household income and lifestyle choices affects potential treatment and care plans
- The importance of including diverse groups in clinical data
- What social determinants should be considered when determining approach to care
- AiArthritis’ patient lead research program
- How healthcare biases contribute to patient disparities
- How to increase digital accessibility for patients
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Who is at the table?
Tiffany Westrich-Robertson, CEO AiArthritis and person living with non-radiographic axial spondyloarthritis, Charis Hill, disability activist and person living with ankylosing spondylitis, and Estela Mata, President Looms 4 Lupus and supporter of persons affected by AiArthritis diseases.
LISTEN TO THE FULL EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
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)!
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* CO-HOST 360it TWITTER POSTS!
Follow the conversation with Kerry and Charis on their platforms!
Visit their twitter accounts for more information
I can't wait - this is such an important topic.
— Float Like a Buttahfly 🦋 Kerry Wong (@buttahflyk) November 13, 2022
Check out the original @IFAiArthritis Talk Show #DEIA episode at https://t.co/CJaP8te1Et and continue the conversation with @BeingCharisBlog & me. #360itChat
Wednesday 3PM PT/6PM ET
~🦋 #arthritis #accessibility #disability pic.twitter.com/q2Jrljn532
SHORT VIDEO CLIPS FROM THE MAIN EPISODE
360it Short Video: What is D.E.I.A.?
Every aspect of what makes a person a person is how they navigate healthcare. No matter what a patient’s culture is, how they identify or their financial status should affect the way they receive healthcare. Patients should feel included, on an equal playing field and safe with their physician care and treatment plans. Healthcare is a huge environment where DEIA needs to be more openly discussed and accounted for because at the end of the day the focus should be on giving the patient the best care regardless of any factor.
As patients, how do you think we can best include DEIA work?
360it Short Video: Patients Should Be Seen as Equal Stakeholders
All patients including diverse groups should be considered in clinical trials to have an accurate representation in data. In addition, patient’s experiences, perspectives and voices need to be heard and accounted for on the issues that affect them directly.
How would you like to see your voice and experiences be heard?
360it Short Video: D.E.I.A. Affect Healthcare
There are many areas of healthcare in which DEIA needs to be considered such as clinical trials and data representation, diagnoses, physician care, treatment plans, treatment accessibility and more. Join us in this conversation as we dive into this topic and share with us some of your experiences with diversity, equity, inclusion and accessibility as a patient.
How do you feel DEIA affects healthcare?
SHORT AUDIOGRAMS FROM THE MAIN EPISODE
360it: #1 DEIA in Healthcare
We all carry concepts of DEIA with us and they impact every interaction we have including in healthcare.
360it: #2 Diverse Groups Equal Treatment
Sometimes we feel if look similar, we will be treated equitably, but it is not always the case. How you are treated is what matters.
360it #3 Equal Stakeholders
Patients should be included as equal stakeholders, with perspectives and opinions of patients are equally heard.
360it #4 Minorities & Clinical Trials
We need to include everyone, all minorities, in Clinical Trails and have diversity in trials.
360it #5 Social Determinants
How individuals identify and move through the world impacts their healthcare journey.
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: @TiffWTobertson
- LinkedIn: @TiffanyWestrichRobertson
Charis Hill
Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker and model living with many conditions including Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis’ multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people. Charis’ story is regularly featured internationally in media outlets and in the documentary: "Becoming Incurable." In addition to Charis' leadership on patient advocacy organization committees and regular speaking engagements about health and disability, they boast bylines in HealthCentral, Healthline, and Business Insider; including cover stories for Arthritis Today and Spondylitis Plus magazine; and they have been awarded by the Arthritis Foundation and Spondylitis Association of America for their work on legislative advocacy for state and federal policy efforts. Charis' fashion modeling has led to them being featured on the cover of magazines and modeling in Los Angeles and New York Fashion Week. They graduated in 2009 from Meredith College, magna cum laude, with a BA in Sociology and minors in Psychology and Women’s Studies. Charis enjoys sewing, cooking, gardening, and loving their 4 cats.
You can find Charis at www.BeingCharis.com
Twitter & Instagram:
Estela Mata-Carcamo
Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides Lupus, Fibromyalgia and Mental Health Awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers. Estela has worked in healthcare for over 30 years, currently supporting private practices with electronic medical records, office workflows to help the practice and patients for a top leading healthcare organization. In 2011 she co-founded Looms for Lupus when her sister almost lost her life to Immune thrombocytopenia and Lupus; she is alive today because she advocated for herself.
Estela has supported her sister and her passion to help others has evolved to “iLOOMinating”, Engaging, Empowering and Supporting the community as a whole to take control of their overall healthcare. For the past 11 years, Estela has co-facilitated support groups, led and participated in educational symposiums, advocated locally and nationally. As a community leader and healthcare advocate she partners, collaborates with initiatives including the U.S. Department of Health and Human Services’ Office of Minority Health and the U.S. Food and Drug Administration’s Office of Minority Health and Health to increase awareness on the need for diversity in lupus clinical trials, All Of US Research, Scripps Digital Trials Center and Congresswoman Grace Napolitano’s Mental Health Consortium. Estela is an exceptional community engagement liaison for both English and Spanish speakers.
- Facebook:@estelamata @looms4lupus
- Instagram: @estela_mata @looms4lupus
- Twitter: @estelamata @looms4lupus
- LinkedIn: @Estela Mata-Carcamo
- YouTube: Looms4Lupus
- TikTok: estela.mata
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!
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