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 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