Research by the Mason Institute conducted as part of work for the Scottish Health Informatics Programme (SHIP) and the Farr Institute on robust governance of data sharing practices has been widely endorsed and supported by a new report by the Irish Health Research Board (HRB). The new report outlines the infrastructure and services needed in Ireland to allow safe access, storing, sharing, and linking data for research.
A series of challenges prompted the HRB to examine this area, including: 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; and 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’.
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.