HRB’s new role in facilitating access to COVID-19 data for research
Since April 2020, a wealth of COVID-19 data has been collected by the Health Service Executive (HSE) in areas including testing, tracing, infectious disease notification and hospitalisation. The data is maintained within the Central Statistics Office (CSO) COVID-19 Data Research Hub. And today, Minister for Health Stephen Donnelly, TD, launched an initiative to facilitate safe and secure access to this data for valid health research purposes. This data-driven research will advance our understanding of COVID-19 for the benefit of people’s health and patient care, as well as to inform and shape healthcare policy and planning.
In partnership with the CSO, the Health Research Board (HRB) has established a robust process to enable registered researchers in registered institutions in Ireland apply for access to it. This application process involves a series of stringent safeguards to protect the privacy and data protection rights of patients and the public, which is to the fore of this new initiative.
Central to this safeguarding is the establishment of the Research Data Governance Board (RDGB), an independent body that will act as a central point for application receipt, screening, review and prioritisation of data requests prior to accessing the CSO service, which will then facilitate secure access to these data if all criteria are met. The RDGB Secretariat is provided by the HRB and supports the RDGB in all aspects of its work. Interested researchers will find eligibility details as well as other information and resources needed to apply for access to the COVID-19 Data Research Hub here on our website.
The Health Research Consent Declaration Committee (HRCDC) is also contributing to this important initiative and has developed a bespoke application form for ease of use to facilitate researchers in applying for a consent declaration from the HRCDC to access the COVID-19 Data Research Hub.
The Minister said: “COVID-19 research plays an essential role in tackling the pandemic, identifying areas for targeted intervention and ongoing planning and evaluation of requirements; in addition to 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 are central when managing our approach to sharing this data. The new Research Data Governance Board will have a key role in reviewing applicationss to access the data for valid COVID-19 related research purposes.”
Dr Teresa Maguire, Director of Research Strategy and Funding at the HRB said:
“The Health Research Board will play a critical role in encouraging timely and relevant covid-19 related research questions from the research community, while at the same time ensuring the adoption of international best practice and standards in data and research governance.”
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.
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.”
Details of the research questions being asked and the specific COVID-19 data being re-used will be shared, and ultimately researchers will publish the findings of their research.