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Press Release

Press release

Major health benefits to be gained by sharing and linking data safely

24 May 2016

The Health Research Board (HRB) will publish a new report today outlining the infrastructure and services needed in Ireland to allow us to safely access, store, share and link data for research.

Speaking at the launch, Dr Graham Love, Chief Executive at the HRB said,

‘Data is one of our most valuable national assets. However, we don’t use it to its full potential because we don’t have the right infrastructure or services in place to share, store or link it safely’. 

Enabling safe linkage and re-use of data in other countries has had major benefits.

For example; by linking diabetes and cancer registries with dispensed prescription datasets, the Farr Institute in Scotland demonstrated how a diabetes drug, metformin, is associated with a reduction in cancer incidence. This resulted in patients being stratified for the most effective treatment as well as the discovery of new drug targets. 

Another of their studies linked education and health data to demonstrate that the risk of developing special educational needs increases steadily with birth prematurity.  This means mothers are aware of risks and benefits relevant to their circumstances.

According to Dr Love, ‘The benefits of having the infrastructure in place for safe sharing and linking data are clear. Other countries have done this and it’s had great impact. The fundamental question is; how can we ensure data is used or shared safely, ethically and legally? We believe the model we have developed will help to achieve this in Ireland’.

A series of challenges prompted the HRB to examine this area. These included: -

  • Data users’ concerns around data protection legislation or good governance.
  • Research not being attempted, abandoned or seriously delayed because data couldn’t be accessed in a timely manner.
  • Duplication of effort, rising costs and delays in securing research results because data had to be collected again.
  • Lack of a unique identifier.
  • Poor skills in preparing data for sharing

According to Rosalyn Moran, HRB and author of the report,

‘Gathering robust datasets is expensive, so it makes sense to use them to their full potential. The model we propose would create the right infrastructure and services to ensure safe access to health data and develop ways to share or link existing data responsibly for great effect. We believe it would be a critical part of the Irish data and statistical infrastructure going forward. But more importantly, it is an opportunity to improve people’s health, enhance healthcare delivery and provide good evidence to inform policy’. 

The DASSL (Data, Access, Sharing, Storage and Linkage) model outlines the infrastructure and services to ensure: -

  • Safe projects (valid research purpose)
  • Safe people (trusted researchers)
  • Safe data and data governance (people’s data protected)
  • Safe setting (security controls)
  • Safe outputs (disclosure control of outputs)

Commenting on the report, Muiris O Connor, Assistant Secretary General at the Department of Health said

‘There are clear benefits to be gained for Ireland by safely sharing and linking data. If we are going to maximise use of our national data assets, I think the DASSL model  provides a great starting point. I hope the report will stimulate a national conversation about how this can be done efficiently to deliver benefits for Irish people and enhance delivery of our health and social care services.’

A copy of the full report, Proposals for an enabling data environment for health and related research in Ireland, is available on the HRB website publications page www.hrb.ie/publications 

For more information please contact:

Gillian Markey, Communications Manager, Health Research Board

+353 87 2288514, gmarkey@hrb.ie

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