A Seat at the Table: How Patients Are Transforming Parkinson's Research

<p>What does it mean to ensure that patient voices shape research, healthcare, and the future of Parkinson&#39;s care?In this episode of The Bridge: Bring Your Health, Your Voice, Esther Labib-Kiyarash, a healthcare administrator, Parkinson&#39;s advocate, social media creator, Patients Professor, and person living with young-onset Parkinson&#39;s disease, sits down with us to talk about her journey. After her diagnosis in 2023, Esther transformed her experience into a mission to help others by raising awareness, connecting with the Parkinson&#39;s community, and advocating for greater patient involvement in research. Together, Esther discusses the importance of the patient-centered movement, the powerful message of &quot;Nothing About Us Without Us,&quot; and why people with lived experience must have a seat at the table when healthcare decisions and research priorities are being shaped. Whether you&#39;re living with Parkinson&#39;s, supporting a loved one, or interested in patient-centered research, this conversation offers valuable insights into the power of advocacy, community, and partnership.This video is part of the PEACE-PD (Palliative Care To Improve Quality of Life for People With Parkinson&#39;s Disease) initiative, which seeks to increase awareness and use of PCORI-funded research on palliative care for Parkinson&#39;s disease. Through patient and care partner stories, PEACE-PD helps people with Parkinson&#39;s, care partners, and clinicians better understand the many dimensions of quality of life, including emotional, social, and spiritual well-being.</p><p>To learn more about Esther Labib-Kirarash follow her on Instagram @shakingingmyboots1, Facebook @Shakinginmyboots Esther, LinkedIn @Esther Labib-Kirarash, and on YouTube ⁨<a href="https://studio.youtube.com/channel/UCUAzTRkNMu9ApuJLFizik6A"> @estherlabib-kiyarash3999 </a> </p><p>Spotify currently does not support transcript uploads for this podcast; to view an ADA‑compliant version of this episode and access the full transcript, please visit our YouTube channel viathe link in the description. https://youtu.be/OcaCNipt7_w</p><p> Visithttps://podcasters.spotify.com/pod/show/the-patients-program to stay updated on both past and upcoming episodes.</p><p>To watch this episode and more, visit our YouTube channel <a href="https://www.youtube.com/playlist?list=PLf5TFMW2PWhKdIEaP2F9xN213vrkTrv9_" target="_blank" rel="ugc noopener noreferrer">⁠https://www.youtube.com/playlist?list=PLf5TFMW2PWhKdIEaP