Ireland's 900 health data systems a barrier to positive patients outcomes, cancer conference told

Professor Aedín Culhane of the University of Limerick predicted bringing researchers from north and south together 'will transform cancer care' here. Pictures: Arthur Ellis

Nearly 900 health data systems exist in Ireland compared to 30 in Germany, which makes gathering information challenging, the first All-Island Forum on Cancer Data has heard.

Cancer researchers from Ireland, the North, and abroad gathered at the University of Limerick (UL) to discuss how patients could benefit from better data-sharing and access to trials.

Deirdre Murray from the National Cancer Registry Ireland said fragmentation of information was a key barrier.

“Somebody recently has done a reckoning and there are now 896 data systems in the Republic Ireland,” she said.

I was in a European meeting where the Germans were complaining about having to put 30 together and I thought ‘we’ve 30 in Cork alone’.

The registry gets information from 102 different locations. It collects data from hospitals, death certificates, GPs, and other sources.

Some information is shared daily and online but Ms Murray said most of them are "some sort of a manual report, and this is done on a monthly or quarterly basis".

Cancer survivor Debbie Keatley described the 'nonsense' of being unable to access her personal health data.

Members from a number of cancer patient support groups were in the audience, including Bowel Cancer Ireland.

One speaker from Belfast, cancer survivor Debbie Keatley, struck a chord with these patients when she described the “nonsense” of being unable to access her personal health data.

“One of the key things we’ve been asking for a long time is routine access to our own health records,” she said.

And it’s still not there. It is still harder than it should be to get proper access to your own health records. It’s almost impossible to see how that can be sustained. 

"The fewer rooms there are with closed doors behind which decisions are made about patient data the better it will be for research.” 

Cancer research hub

The forum also saw the launch of a new cancer research hub linking institutes around the island. This will use data to help save patients’ lives.

Aedín Culhane, professor of cancer genomics at UL, is co-lead of the All-Island e-health hub for cancer, which hosted the event.

She predicted bringing researchers from north and south together “will transform cancer care” here.

“By connecting data, we connect patients to innovative research, life-changing treatments and clinical trials,” she said.

From left : Professor Ruth Clifford, consultant haematologist at UHL; Professor Mark Lawler, Queen's University Belfast; and Professor Aedín Culhane, University of Limerick.

This could speed up discoveries, and ultimately “improve outcomes for patients in the Mid-West and throughout the island of Ireland."

However she cautioned: “Building world-class infrastructure will take time".

Mark Lawlor, professor of digital health at Queen’s University Belfast, is also co-lead of the e-health hub.

He said the cancer data forum "is a watershed moment for cancer patients on the island of Ireland".

He welcomed the new national research hub, saying: “Establishing this national node promotes us to the premier league, positioning us to benefit from the latest advances in in data-informed cancer research.”

The forum was co-hosted by the Limerick Digital Cancer Research Centre, based at UL.