Agentic Patient 9: She built an AI companion for breast cancer patients - and won't upload her records to ChatGPT

"I am actually quite wildly uncomfortable with patients using LLMs." She built an AI companion for breast cancer patients — and she means it. Ellyn Winters-Robinson was diagnosed with breast cancer in March 2022, months before ChatGPT launched. She wrote a book about it on her iPhone during chemotherapy. That book became AskEllyn, an AI companion now live in Cigna Healthcare's breast cancer community and used across a hundred countries. In this episode of The Agentic Patient — a Faces of Digital Health series on how patients actually use AI, which prompts, which guardrails — she talks to Tjasa Zajc about what an AI companion can hold that a clinician cannot, and why she still worries about where patient data goes. Guest: Ellyn Winters-Robinson, CEO of The Lyndall Project and AskEllyn, author of "Flat Please Hold the Shame" What the conversation covers: \- Building an AI companion from a book written on an iPhone during chemotherapy \- Why she keeps AskEllyn strictly non-medical, and how that guardrail held up under health-insurer review \- Whether one woman's lived experience can support patients with different cancers, cultures and languages \- Why traditional cancer support groups can become "places of collective trauma" \- Scanxiety, and what happened when she used her own chatbot during a CT scare \- Why she is uncomfortable with patients uploading medical records to ChatGPT or Claude \- Patient data rights, desperation, and the risk of being "victimized again" by AI tools \- The Canadian Cancer Society-funded study now testing whether AI companions actually help \- "The patient is the workflow" — lived experience as an untapped resource in health system design \- How clinicians can coach patients to use AI safely instead of pretending they aren't Chapters: 00:00 Intro: why The Agentic Patient series exists 04:00 Meeting Ellyn Winters-Robinson 05:26 Diagnosed in 2022, before ChatGPT existed 07:36 From a book written on an iPhone to an AI companion 08:53 Why nurses and social workers started recommending it 09:54 Can one woman's story support every patient? 12:21 Shame, language, and cultures where breast cancer isn't discussed 13:25 Scanxiety — and taking a pep talk from your own chatbot 15:57 How AskEllyn is built on top of the LLMs 18:19 The non-medical guardrail, and how it held up under insurer review 21:51 Why patient AI use is outpacing the system 29:25 "The patient is the workflow": lived experience as untapped data 34:05 Inside the Canadian Cancer Society study 41:03 Why she's uncomfortable with patients uploading records to LLMs 45:54 The trauma healthcare never sees 6 tips on using AI as a patient: https://youtu.be/DGGVXxB4ygI?si=7m7HqCLKow51KSlQ Faces of Digital Health: Website: https://www.facesofdigitalhealth.com LinkedIn: https://www.linkedin.com/company/faces-of-digital-health Spotify: https://open.spotify.com/show/4cElKJHrauyP6QJQaCkvdY Apple Podcasts: https://podcasts.apple.com/gb/podcast/faces-of-digital-health/id1194284040 Newsletter: https://fodh.substack.com The Agentic Patient series: https://www.facesofdigitalhealth.com/agentic-patient AskEllyn: https://askellyn.ai #DigitalHealth #AIinHealthcare #BreastCancer #PatientAdvocacy #CancerSurvivorship #HealthTech #TheAgenticPatient