...hearing from the patient representatives has provided me with insights about how patients and their carers may view research and the use of their data and reminds me to always keep the patient and their rights at the forefront.
The Committee
The Health Research Consent Declaration Committee (HRCDC) is appointed by and reports to the Minister for Health. It consists of individuals with a diverse range of professional backgrounds and experiences, including critical care medicine and anaesthesiology, data protection and medico-legal expertise, general practice medicine, epidemiology, genomics, social care research, and other areas, thus providing a broad representation of Ireland’s health research community. The Committee’s PPI representative members bring complementary perspectives as members of the public, as carers, and as users of health and social care services in Ireland.
The HRCDC assesses the public interest of each research study. As per Regulation 5(5)of the Health Research Regulations 2018, in order to make a consent declaration, the HRCDC must determine that the public interest in carrying out the health research significantly outweighs the public interest in requiring the explicit consent of the data subject(s).
In carrying out its function, the HRCDC also considers the data safeguards in place for each study in order to ensure that personal data are handled appropriately and according to regulatory requirements.
The HRCDC will consider whether or not a consent declaration should be made on the basis of applications made to it. There is provision for an appeal from the decision of the HRCDC to an independent appeal panel appointed by the Minister.
The Committee may:
- Make a consent declaration
- Make a consent declaration subject to conditions attached
- Not make a consent declaration
- Request further information
- Revoke a consent declaration
- Make a consent declaration
- Make a consent declaration subject to conditions attached
- Not make a consent declaration
- Request further information
- Revoke a consent declaration
Applications for a consent declaration will be assessed by a minimum of seven members of the HRCDC, at least one of whom will be the Chairperson or Deputy Chairperson and one of whom is a public and patient representative.
Become a member
The Health Research Consent Declaration Committee (HRCDC) was established under the Health Research Regulations (S.I. 314 of 2018 and as amended S.I 188 of 2019 and S.I. 18 of 2021).
The Committee is appointed by the Minister of Health and makes consensus-based decisions in the interest of patients and the public regarding the use of personal data without explicit consent from the individuals whose data are being used for health research purposes.
Where there are is a public interest for conducting the research, that outweighs the public interest in requiring explicit consent from the research participant, the Committee may make a consent declaration, allowing the research study to progress.
Being a member of the HRCDC is an exciting opportunity to support the Irish Health and Social Care Research communities, especially in the cases where is it not possible or feasible to get explicit consent of participants.
Apply
We now welcome expressions of interest to join the HRCDC in early 2025, in the following areas:
· Epidemiology and public health
· Health economics and health services research
· Human genomic data analysis
· Clinical research nursing
· Patient and public involvement (PPI) representatives – lived experience as a patient, carer, participant in research is desirable.
We also welcome expressions of interest from individuals with experience in other clinical areas and have previously been actively involved in health research studies.
To find out more and to apply, please download and complete the expression of interest form and send it to secretariat@hrcdc.ie. Expressions of Interest should be submitted by Friday 29th November.
As the HRCDC evolves, from time to time, we will also seek to appoint new members to the Committee as any vacancies arise. Please also let us know if you have an interest going forward in joining the committee and we will save your details for consideration should a vacancy arrive in the future.
We look forward to hearing from you.
HRCDC Secretariat.