{"podcast":{"title":"Unlocked with Skot Waldron","slug":"unlocked-with-skot-waldron-6291578","podcast_index_feed_id":6291578,"rss_url":"https://feeds.libsyn.com/458334/rss","website_url":"https://skotwaldron.com/","image_url":"https://static.libsyn.com/p/assets/a/b/0/5/ab0593cd410fa284e55e3c100dce7605/Unlocked_Cover_Art_2.png","author":"Skot Waldron","episode_count":175,"summary":"What if there was one place to gain short, powerful insights from leaders and influencers worldwide? Join communication strategist Skot Waldron as he interviews people like John Lee Dumas of Entrepreneurs on Fire, Ann Hiatt, who worked directly with Jeff Bezos, Marissa Mayer, and Eric Schmidt, former CIA agent Marc Polymeropoulos, and Matt Doherty, Michael Jordan's former coach, and mines the gold inside each of their heads. Unlock the potential of you and the people you do life with by listening to every episode!","last_synced_at":"2026-07-14T20:17:09.511953+00:00","page_url":"https://stenobird.com/podcast/unlocked-with-skot-waldron-6291578"},"episode":{"title":"Unlocking Trust and Rare Diseases with Wes Michael","slug":"unlocking-trust-and-rare-diseases-with-wes-michael","published_at":"2026-02-24T11:00:00+00:00","page_url":"https://stenobird.com/podcast/unlocked-with-skot-waldron-6291578/unlocking-trust-and-rare-diseases-with-wes-michael","show_page_url":"https://stenobird.com/podcast/unlocked-with-skot-waldron-6291578","url":"https://skotwaldron.com/blog/unlocking-trust-and-rare-diseases-with-wes-michael","audio_url":"https://dts.podtrac.com/redirect.mp3/traffic.libsyn.com/secure/085636a1-fe4e-4fe0-ad50-497d4243de48/Unlocking_Trust_and_Rare_Diseases_with_Wes_Michael.mp3?dest-id=3861555","summary":"If you've ever felt like healthcare \"listens\" to patients the way a cat listens to a vacuum… this episode is for you. Wes Michael (Rare Patient Voice) breaks down what it really takes to build a community where patients feel safe, respected, and actually heard and how that trust turns into better research, better decisions, and better outcomes in rare disease. Skot and Wes talk about the company's evolution, why patient time should be compensated, how surveys and interviews turn lived experience into usable insight, and the difference between \"collecting data\" and \"earning truth.\" You'll also hear why caregivers matter, what advocacy looks like in practice, and how meaningful work scales when you protect the human part of the process. Timestamps: 00:00:00 – Intro & Highlights 00:04:34 – Rare Disease Day and Why This Conversation Matters 00:05:04 – The 12-Year Cycle: Why Wes Chose to Make a Big Change 00:07:41 – Working with Pharma: Where Patient Insight Fits 00:08:19 – Paying Patients for Their Time (and Why That's Respect) 00:09:35 – Surveys, Interviews, and Capturing the Real Story 00:13:26 – Turning Lived Experience into Useful Data and Decisions 00:17:22 – Caregivers: The Missing Piece Most People Overlook 00:23:59 – Lightning Round: Trust Killers, Hiring Lessons, Keeping Promises 00:32:20 – Advocacy, What's Next, and Wrap-Up Website: rarepatientvoice.com LinkedIn: www.linkedin.com/in/wesmichael Instagram: www.instagram.com/rarepatientvoice Facebook: www.facebook.com/rarepatientvoice","meta_description":"If you've ever felt like healthcare \"listens\" to patients the way a cat listens to a vacuum… this episode is for you. Wes Michael (Rare Patient Voice) bre…","key_points":[],"chapters":[],"topics":[],"duration_seconds":2142,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/unlocked-with-skot-waldron-6291578/episodes/unlocking-trust-and-rare-diseases-with-wes-michael/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/unlocked-with-skot-waldron-6291578/unlocking-trust-and-rare-diseases-with-wes-michael.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]}}