Agentic Patient 11: ""I stopped letting AI read my daughter's medical records" (Karlien Hollanders)

She has 408 of her daughter's medical documents. She stopped letting AI read them — here's why.

Karlien Hollanders is a pharmacist who became her daughter's medical record. When her firstborn went into complete renal failure at two months old and was diagnosed with primary hyperoxaluria type 1, she spent three years moving between Belgian specialist hospitals that could not exchange data with each other. Eleven years later, 408 documents sit on a national platform that can be filtered by doctor, hospital and date — and nothing else. This episode of The Agentic Patient is about what happens when you actually try to put AI to work on a real, fragmented, non-anonymised medical history: what it organised, what it got wrong, and the reason she has stopped.

GUEST

Karlien Hollanders — Patient expert and caregiver; consultant to the Belgian federal health service; pharmacist by training

Host: Tjaša Zajc

THE AGENTIC PATIENT

A Faces of Digital Health series on how patients and caregivers actually use AI — which tools, which prompts, which guardrails — and what that does to the clinical relationship.

Series hub: https://www.facesofdigitalhealth.com/agentic-patient

WHAT THE CONVERSATION COVERS

- Being your child's "walking medical record" across five specialist hospitals

- Why case management exists for cancer and diabetes but not for rare disease

- 408 PDFs, three filters: the missing-metadata problem in national health data platforms

- Federated health data explained — and why you still download your records one click at a time

- What AI document tools did well: organising records by organ and producing specialty-specific summaries

- The timeline AI could not build, and why copy-pasted clinical letters break text-layer summarisation

- Why internists and orthopaedic surgeons need the same records and completely different queries

- The 15-minute consultation and the unprepared specialist

- Local bulk de-identification: the tool that does not exist, and the vendors who could not supply it

- A child's medical data on third-party AI platforms, twenty years forward

- Patient summaries and cross-border care: what an emergency room in another country actually needs

- EHDS versus AI extraction — structuring data at the point of documentation instead of after it

- SNOMED CT and structured entry that clinicians do not know they are doing

- ZAS Antwerp's AI-generated patient-friendly discharge letters, already in production

- Why a shared medication scheme can be five years out of date in a country with electronic prescribing

- Personal health vaults, EU wallets and itsme: identity is not the same as data portability

- Practical advice: how to assemble your own records before letting AI near them

CHAPTERS

03:00 A caregiver's view of patients using AI

04:28 Renal failure at two months: primary hyperoxaluria type 1

10:43 Ten years on: what has changed in Belgian health data sharing

13:04 408 documents, three filters: the metadata problem

15:03 Downloading a federated health record one PDF at a time

17:20 What AI document tools organised — and the timeline they couldn't build

22:27 Same records, different questions: internists vs orthopaedic surgeons

26:38 Not a technology problem: incentives and the missing business case

30:18 AI as a better Google — and where that gets dangerous

32:30 The anonymisation gap: why she stopped feeding AI real data

36:10 Patient summaries, EHDS and structuring data at the source

41:46 ZAS Antwerp's AI-written patient letters, already in production

47:49 Preparing for a specialist visit when your records are scattered

MENTIONED

European Health Data Space (EHDS) — Regulation (EU) 2025/327

ZAS (Ziekenhuis aan de Stroom), Antwerp — AI-generated patient-friendly letters

FACES OF DIGITAL HEALTH

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Apple Podcasts: https://podcasts.apple.com/gb/podcast/faces-of-digital-health/id1194284040

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