Update — May 2026
This has been a busy and significant period for UCAN’s work on digital health and patient access to medical records, and we want to make sure our members are fully updated on what we’ve been doing, what’s been happening in the wider landscape, and why this issue matters so much for cancer patients in Ireland.
The RTÉ story — our data in the national conversation
Yesterday, RTÉ ran a major piece by journalist Aisling Kenny on the state of electronic patient records in Ireland. The headline figure: nearly 100,000 legal requests for information from the HSE over the last three years, the vast majority from patients simply trying to access their own medical records.
We provided data from our survey to support that story, and we’re proud that it’s now part of the national conversation. You can read the full RTÉ article here.
The piece features the deeply moving story of Shane Rodgers and Claire O’Shea, who spent nearly a year working through FOI requests trying to understand what happened when their baby Noah was stillborn. Their experience — going through hundreds of pages of paper records, trying to piece together a picture of their own care — is not exceptional. It is typical. And that is exactly the problem our survey data documents.
Ireland ranks last among 29 European countries for access to eHealth services. We are the only EU member state not offering e-health data to patients. At the same time, Ireland is ranked fifth most advanced digital economy in the EU overall. That gap — between our digital ambition and our healthcare reality — is the gap UCAN has been working to close.
What our survey told us
In early 2025, we surveyed almost 1300 cancer patients treated in Ireland. What we found was stark. 69% of respondents did not know they had the legal right to access their own medical records. 84% did not know how to request access. Just 15% had ever formally requested their records — and of those who tried, 12.6% were refused with 61% taking more than 3 months to get.
Patients described feeling excluded and infantilised. In their own words:
“I was given out to for looking at my own file.”
“I don’t even know how to start accessing my files. I feel like the doctors would be annoyed with me.”
“Waiting 3 or 4 weeks for scan results is a form of torture.”
“I waited a year for my records. I’m Stage 4 — I don’t have years to wait.”
The demand is not in doubt. Across every type of information — diagnosis, treatment plan, blood results, scan reports, pathology, genetic testing — between 91% and 97% of patients said they wanted access immediately or in consultation with their doctor.
This is not a niche concern. It is a near-universal patient need that the system is currently failing to meet.
The eHealth Ireland Forum
Earlier this year, Miriam presented our survey findings at the eHealth Ireland Forum as part of the Conroy-Hastings Memorial session on the importance of advocacy in driving policy change. The presentation set the patient data alongside the wider picture: Ireland’s contradictory position as a digital economy leader that is simultaneously last in Europe for patient eHealth access.
The core argument was simple. The EHR is not a technology project — it is the foundation on which everything else rests. Clinical notes, correspondence, appointments, prescriptions, blood results, scan results, pathology reports: all still held away from patients in a system that is almost entirely paper-based. This creates fragmented care, repeated conversations across consultations, barriers to clinical trial recruitment, and gaps in the real-world data that our health system desperately needs. It also creates the situation Shane and Claire faced — where patients seeking answers about their own care have to navigate a legal process to do it.
Maynooth University Digital Health Summer School
This week, Miriam presented at the Fourth International Digital Health Summer School at Maynooth University. The talk — The Gap Between the Promise and the Reality — drew directly on our survey data and argued that while Ireland is hearing a great deal about the promise of AI, precision medicine, genomics and digital innovation in health care, the fundamental building blocks are not yet in place to deliver on that promise.
The session also featured an international perspective from a haemato-oncologist at Spaarne Gasthuis in the Netherlands, who presented what is possible when those building blocks exist. In 2006, 85% of all oncology day unit admissions at their hospital were chemotherapy patients. By 2023 it was 2%. Today, 40% of patients are connected to the day unit but completing their treatment at home — through self-administration of subcutaneous medicines. Patient satisfaction is 94%.
This is not science fiction. These medicines — including trastuzumab for breast cancer — are being prescribed in Irish oncology departments right now. The clinical evidence for home self-administration is there. But making it work safely requires that the patient’s record is accurate, accessible and real-time, that the care team can monitor remotely, that systems are connected. None of that is possible in a paper-based health service.
The conference also featured a broader discussion about the Sláintecare vision — the shift from hospital to community care — and the stark demographic mathematics that make action urgent. Ireland’s population has grown by 15.8% in the last decade and is ageing rapidly. If nothing changes, the demand on the health system will be unsustainable. The solutions exist. The roadblock is infrastructure.
Where things stand on the EHR
The good news is that momentum is building. Minister for Health Jennifer Carroll MacNeill approved the procurement of a national electronic health system this year — known as One Health Record. The HSE describes it as the largest digital transformation project in the history of the health service.
But procurement is not implementation. And implementation without a patient portal still leaves patients on the outside. St James’s Hospital has almost completed its EHR — and currently has no patient portal. Our access is still an extract from the record, posted to us.
As the RTÉ article noted, the procurement process is likely to extend to 2027 and the rollout could take years beyond that. The EU’s new European Health Data Space regulation is adding pressure — member states will be required to improve electronic access to patient records and enable cross-border sharing of health information. That is both an obligation and an opportunity.
What UCAN is calling for
Our position has not changed, and it is grounded in the evidence our members provided through the survey. We need:
The EHR to be implemented — not just procured — and must be progressed at pace.
Real-time access to results. 92% of our respondents rated receiving scan and blood results as soon as available as very important. The wait is not cautious — it is harmful.
The cultural shift to happen alongside the technical one. A patient told during chemotherapy that they cannot look at their own file is not an IT problem. It is an attitude problem.
The dots to be connected between records access, clinical trials, genomics and reimbursement. Precision oncology requires data. That data belongs to patients. Until patients can see it, share it and contribute it, the promise of precision medicine will remain out of reach for Irish patients.
Your voice made this happen
Every piece of progress in this space — the RTÉ story, the conference presentations, the policy conversations — rests on the 1,280 members and supporters who completed our survey. Your experiences, your frustration, your clarity about what you need are what make the argument undeniable.
We will continue to push. If you want to get involved in this work, or if you have a story about accessing — or being blocked from accessing — your medical records, we’d love to hear from you.