Electronic health records to be rolled out despite data concerns

Electronic health records are to be rolled out for everyone availing of Irish healthcare services and will ensure better outcomes for patients, the chairman of the Government's "eHealth" project, Prof Mark Ferguson, has said.

He said the project was going ahead in spite of concerns about personal information being stored digitally.

Prof Ferguson said the reality was that “electronic health in Ireland is not in a good place” but the changes being introduced would lead to better quality of GP and hospital care, and a seamless transition from one system of care to the other.

Under the plans, all people availing of healthcare would have a unique identifier and all their records would be stored digitally and there would be the capacity to carry out "genome sequencing" to chart their genetic make-up where appropriate, added Prof Ferguson, who is also the Government's chief scientific adviser and head of Science Foundation Ireland.

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Speaking at a medical conference in Dublin on clinical trials, he said he appreciated eHealth was a sensitive area which had people “really worried”.

In contrast, he noted they did not give a damn about “a paper of record being lost in the back of a taxi” or paper records being kept in an unlocked room.

As a consequence, eHealth Ireland was engaging in a series of pilot projects to reassure the public and to demonstrate the advantages for them.

In one such project 20 people with epilepsy had their genotype profiled. In one case, it resulted in a person, who had an epileptic fit every day for 30 years, adopting a dietary change that meant they have never had a fit since.

He said the eHealthIreland project set up by the Department of Health had developed seven patient personas, which meant different things had to be delivered for different categories of people, informed by studies of "sickness" and "health". This strong patient focus would be critical to the procurement process.

‘Frightened’

He accepted that the biggest hurdle was educating people “so they are not frightened about control of their data”.

The initiative would also secure better participation in clinical trials and ensure proper consent, Prof Ferguson said at the conference hosted by the Avoca Quality Consortium, which co-ordinates collaboration on clinical trials.

Ireland’s approach to scientific research was being vindicated, he said, as it meant the State had become a global leader in chosen fields. This was a consequence of research excellence which was distributed in different places.

Through 12 highly-specialised research centres based in third-level institutions and close collaboration with industry, and backed SFI funding, Ireland was among the top five globally in areas such as nanotechnology, animal and dairy, chemistry, immunology and mathematics, he added.

Prof Ferguson said SFI was underlining the benefits of Ireland in the context of Brexit, though they were “not actively poaching people”. They wanted good researchers to think of relocating to Ireland.

Leading universities

To assist this, they were collaborating with four leading universities in the UK (Oxford, Cambridge, University College London and Imperial College London) which are ranked in the top-10 in the world.

This would involved “joint appointments” to centres in Ireland and the UK while PhD students would divide their time between both locations. In addition, SFI was also strengthening relations with major funders of research in Britain, which would be important regardless of the Brexit outcome.

He cited the example of “a potential Nobel Prize winner” based in the US, reluctant to pursue climate change research there because of the Trump factor, who might have concerns about going to the UK, but might be persuaded by the joint approach involving Ireland.