Ep 122 - Turning Patient Experiences into Real-World Impact

AiArthritis was built by listening to patients. For more than 15 years, conversations within the community have shaped programs, resources, research initiatives, and advocacy efforts designed to improve the patient journey. In this episode, Leila and Tiffany discuss AiArthritis' next chapter and how the organization is expanding its commitment to collecting, analyzing, and acting on lived experience data. The conversation explores what lived experience data is and why it matters. Patient stories can help identify unmet needs, improve healthcare conversations, influence research priorities, and drive meaningful change. Leila and Tiffany also share how AiArthritis is creating new opportunities for patients, care partners, and advocates to contribute their experiences and ensure every voice is counted. Whether you have participated in an AiArthritis program before or are just discovering the organization, this episode offers a behind the scenes look at how patient experiences become real world impact. It also highlights new ways to get involved and help shape future programs, resources, and advocacy efforts.   Episode Highlights: How sharing your experience can help improve care for future patients Why AiArthritis is expanding its focus on lived experience data Real examples of patient feedback leading to new resources and solutions New ways to participate in research and community driven initiatives What's coming next for AiArthritis Voices and patient engagement   Links & Resources Mystery Patient Guide: https://www.aiarthritis.org/undiagnosed JHA/HCP Communication Toolkit: https://www.aiarthritis.org/JIACommunication Submit Your Rant: https://www.aiarthritis.org/rant WTHellth Website: https://wthellth.org/ Have questions about this episode or topics you want to hear us bring to the table? Email us at [email protected]  Donate to Support the Show: www.aiarthritis.org/donate   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Co-Hosts: 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   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. 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.  Connect with Leila: Tiktok: @Lupuslifestyle.lei