Published: 23 May 2016
Proposals for an enabling data environment for health and related research in Ireland
Ireland has considerable data resources in a number of fields which could be harnessed to advance medical treatments, enhance health service delivery and inform policy and planning across government and civic society. These include:
- Routinely collected health services data (e.g. see Catalogue of National Health Information Sources in Ireland, 2014)
- Disease registers (e.g. Cancer Registry)
- Survey data and cohorts (e.g. Growing Up In Ireland)
- Census and administrative data
The fundamental question is - how can researchers and policy makers avail of one of our most valuable national assets i.e. existing data, and use such data in a safe, secure manner, protecting the privacy and confidentiality of the data subjects, and in accordance with existing legislation? The HRB Data report presents a model for discussion called the DASSL model. The model allows for the safe usage and linkage of health and related data including administrative data within the Irish context. The DASSL model comprises seven elements – five related to infrastructure and services [a health research data hub, safe haven, trusted third party and data linkage service, disclosure control and a research support unit] required for safeguarding data, and two related to the broad legislative and socio-cultural context needed to facilitate implementation of the model i.e. governance and public engagement. Implementation of the DASSL model will allow for safe usage of currently under-exploited data which can help inform health and wellbeing but also serve national economic and social agendas.