Health reforms to enable sharing of patient data

The Department of Health will introduce new regulations to enable patient data to be shared, including for research, ahead of the rollout of electronic health records in the coming years.

Muiris O’Connor of the department told the Future Health Summit at the Convention Centre Dublin on Tuesday that it was putting in place regulations in line with the new EU General Data Protection Regulation (GDPR), which became enforceable from May 25th.

He said money would be coming from the Government from next year onwards to help drive the transformation of the health service.

At present, he said information within the Health Service Executive (HSE) went into "its own little pockets" and that e-health was a "critical enabler".

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“If this is year zero, this is the year to sort out the information – the plumbing, you might say,” he said.

“There’s a lot of misunderstanding up to now about what the law said in regards to sharing information. We have brought in regulations . . . under the GDPR to absolutely clarify the expectation that data must be shared in the interest of patient health and safety and we are creating the legislative framework to ensure that can be done.”

Mr O’Connor said the Sláintecare report published last year was a “huge opportunity”. The report outlined a new model of healthcare requiring an additional €2.86 billion investment in the health service over 10 years.

The event was attended by representatives of health startups and also multinationals such as Dell and Microsoft, who heard details of the current funding opportunities available at EU level for app development and other technologies that would assist in the provision of advanced and personalised healthcare.

One speaker from the floor called for the establishment of a special “incubator” for health startups within the HSE and for entrepreneurs to be given clinical access to help develop their products.

New system

The new chief information officer of the HSE, Martin Curley, told the e-health strand of the conference that the current system of patient records had to be replaced with electronic health records.

He said there was a “heavy lift” to do, but this would be transformational and lead to new innovations and new services.

“We want better health outcomes, we want better resource efficiencies, but there also is a real opportunity for wealth creation and for Irish companies and international companies to prove and test solutions here and then market them abroad. So this is how we measure value.”

Speaking on a panel on patient-centred research and innovation and the prospects for e-health in Ireland, Frank O'Donnell of Microsoft said products had to be designed so that data was not just gathered and used at the point of service itself, but could be used later for research.

Maureen King, founder and chief executive of iTrust Ethics, which advises public and private sector bodies on the management of sensitive data, told delegates they needed to "demystify" the cyber threat. She said data breaches were "the norm" and that 62 per cent of them were down to human error.

“They do occur. They lead to media coverage and there is increased public and regulatory scrutiny,” she said. Ms King told delegates that behind every piece of data, there was a human being, and a stolen health record could sell for between $355 (about €308) and $380.