Ep 103: Elevating the Patient Voice

Elevating the Patient Voice

AiArthritis Voices 360, Episode 103

Air Date: November 3 , 2024

This episode is a Step5, as outlined in our 6 Step Patient-Led Problem Solving Process.

In this episode of AiArthritis Voices 360, co-hosts Leila P.L. Valete and Brittany Murray—both living with AiArthritis diseases—dive into the power of patient voices in transforming the healthcare experience for the AiArthritis community. They bring empathy and validation to stories submitted by listeners, highlighting real struggles with insurance, pharmacy issues, and the emotional toll of chronic illness. Brittany also shares key takeaways from the recent Autoimmune Community Summit, covering practical tips for self-management, understanding the influence of environmental factors, and the importance of owning and sharing your story to drive change.

This episode is packed with relatable stories, actionable advice, and encouragement for anyone navigating autoimmune challenges. Tune in for new ways to elevate your voice and join a supportive community that understands.

Episode Highlights:

Leila and Brittany discuss the impact of elevating patient voices in the AiArthritis community.
Patient-submitted stories reveal real challenges with insurance, pharmacy issues, and living with chronic illness.
Key insights from the Autoimmune Community Summit highlight the importance of self-management and environmental factors.
Tips on using personal stories in healthcare advocacy help patients drive meaningful change.
AiArthritis’s "WTHellth" project aims to address systemic barriers in healthcare.
The hosts share tools like communication aids and advocacy programs for patient empowerment.

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!

Who is at the table?

Leila is the Health Education Manager at the International Foundation for AiArthritis.

Brittany Murray is a dedicated AiArthritis volunteer who has been living with Psoriatic disease for over 30 years

READ CO-HOST BIOS

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

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[00:00:00] Intro: Welcome to AiArthritis Voices 360, the podcast solving today's most pressing issues in the AiArthritis community. We invite you all to the table where together we face the daily challenges of autoimmune and autoinflammatory arthritis. Join our fellow patient co hosts as they lead discussions in the patient community, as well as consult with stakeholders worldwide to solve the problems that matter most, whether you are a loved one, a professional working in the field, or a person diagnosed with an AiArthritis disease, this podcast is for you. So pull up a chair and take a seat at the table.

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 (Step 6 in our organization's 6-step process), 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!

Your Host: Who is at the Table this Episode?

Leila P.L. Valete

Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.

Connect with Leila:

Instagram: @lupus.lifestyle.lei
TikTok: @lupus.lifestyle.lei

Brittany Murray

Brittany is a dedicated AiArthritis volunteer who has been living with Psoriatic disease for over 30 years. She loves to share her story to help others with AiArthritis diseases and to assist with advocacy and education work around hot topics like prior authorization and step therapy. She also started a blog and social community called ChronicDiseaseDiary to build a community of empowerment, love and support for those with chronic diseases or caretakers of those with chronic diseases.

Connect with Brittany:

ChronicDiseaseDiary

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!