Registered researchers will be able to apply for access to Ireland’s Covid-19 data research hub.
Since April 2020, Ireland’s Central Statistics Office (CSO) has been maintaining a Covid-19 data research hub.
This data has been solely used by a sub-group of the National Public Health Emergency Team to conduct statistical analysis on healthcare data.
Now, Minister for Health Stephen Donnelly, TD, has launched an initiative that will make it possible for registered researchers to safely and securely access this data hub for health research purposes.
The process has been created in partnership with the CSO and the Health Research Board (HRB). As part of the process, a series of safeguards have been put in place to protect patient privacy, with researchers only being able to access data from which all identifying information has been removed.
Following a rigorous approval process, successful researchers will be able to access the data to help advance research and understanding around the novel coronavirus.
Donnelly said Covid-19 research plays an essential role in tackling the pandemic and will help to identify areas for targeted intervention and assist with ongoing planning and other public policy decisions.
“Modelled on best international practice, the mechanism we have in place with the CSO and the HRB will ensure that patient privacy and confidentiality is central when managing our approach to supporting valid research of this data,” he said.
“A key part of this will be the establishment of a Research Data Governance Board (RDGB) to review applications to access the data for valid Covid-19 related research purposes.”
The RDGB is an independent body established jointly by the HRB and the CSO, in close collaboration with the Department of Health. It will act as a central point for application receipt, screening, review and prioritisation of data requests.
Researchers applying for access to the data must be registered and the access will be granted for a limited, agreed period. The RDGB will only recommend applications that have been approved by a research ethics committee and the Health Research Consent Declaration Committee.
Successful applicants will also be subject to robust protocols in line with the CSO’s data management policy. Researchers will be required to sign a declaration of secrecy.
Paul Morrin, assistant director general in the CSO, said this access will allow researchers to use data as part of valid research projects that will advance medical treatments, health service delivery and inform policy and planning across both Government and wider society.
“Selected researchers will be permitted to apply for access to pseudonymised, individual-level data relating to Covid-19 cases, testing, individual information regarding those treated in hospital for the virus and those that have been identified as being a close contact of a confirmed case,” he said.
“At all times the CSO will protect the security and confidentiality of individual data, as it is required to do so under the Statistics Act 1993, and this data sharing initiative complies fully with data privacy regulations.”
Dr Teresa Maguire, director of research strategy and funding at the HRB, added that it’s essential the public understand the importance of using health and social care data for research purposes.
“A key principle for all partners in this initiative has been to ensure that everything we do is secure, transparent and supports research in the public interest,” she said.
“This is critical in the immediate context of tackling Covid-19, but also more broadly to optimise data and evidence-informed decision-making to transform how health care is delivered and indeed how we manage our own health.”
Registered researchers who want to apply for access to the Covid-19 data research hub can find more information here.