‘Almost criminal' that patients cannot access medical records – former HSE digital chief
It is 'almost criminal' that Irish patients cannot easily access their own medical records, according to a leading digital health expert, who resigned in frustration from the HSE two years ago.
Maynooth University professor of innovation Martin Curley addressed the college's Digital Health summer school today, Monday.
He resigned as the HSE's head of digital transformation in 2023 after five years. At the time, he compared the challenge of the role to scaling Mount Everest.
In just one example of obstacles facing patients and staff, anyone who wants to see their personal medical records must make a Freedom of Information (FOI) request.
'This is nonsense, this is almost criminal,' he said, speaking after the event.
'One of the angles we talked about today is that we are in breach of GDPR. There's a fundamental right from GDPR that patients have access to their information.'
He acknowledged there could be sensitive information which doctors might be reluctant to share, or information which needs explanation.
Despite this, he said, a shift away from the FOI requirement would mean 'moving from paternalism to participation and partnership'.
His main focus at Monday's event was on practical examples of how digital technology could help this shift happen, and also benefit other areas of health.
Praise for HSE's Mission 10X
The conference heard about a digital health initiative already in use by the HSE Dublin and in the Midlands health region.
Prof Curley said the Mission 10X system is based on 10 recommendations. He described it as 'fully aligned' with the Sláintecare programme.
It runs on an individual e-health record called 'SPINE' — secure patient information network exchange. It is in use with over 15,000 patients.
He added that the conference heard of 'staggering changes' from the HSE's Maxine Radcliffe regarding swifter and more accurate triaging of patients. He said:
We're calling Mission 10X a moonshot, to bring Ireland from last in Europe to first in the world in digital health.
'We need to scale it [nationally] and, if this plan is supported, everybody in Ireland will have a personal health record on their phone and it will be completely integrated from a pharmacy, to the GP, to the hospital. We actually demonstrated that working today, so it's not pie in the sky.'
It has been estimated about €10m is needed to run what he called 'a large living lab' to test it further.
'Then we think we could give everybody a personal electronic health record for €100m, and have it working with SPINE,' he said.
Other speakers at the event included the Irish Patient Association's Stephen McMahon and Ibec chief executive Danny McCoy.
The HSE has said it is rolling out digitalisation across the system, with the HSE app for patients now up and running in its first phase.
Last October, HSE chief Bernard Gloster said the the health service is 'about seven years' away from delivering a digital health record system to replace paper records.
They are in use in some maternity hospitals already.
The programme for government also commits 'to continue to work towards the full digitisation of Irish healthcare records and information systems'.
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