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
Resources Mentioned In This Episode:
Meet Our Co-Hosts & Guests:
- 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.
Connect with Tiffany:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- 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. 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.
Connect with Estela :
- Facebook:@estelamata @looms4lupus
- Instagram: @estela_mata @looms4lupus
- Twitter: @estelamata @looms4lupus
- YouTube: Looms4Lupus
- TikTok: estela.mata
- 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.
Connect with Charis:
- Twitter: @beingcharisblog
Donate to Support the Show: https://www.aiarthritis.org/donate
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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). Be sure to check out our top-rated show on Feedspot!
