...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.
Committee Members
Ms. Brigid McManus
Brigid McManus is a former Secretary - General of the Department of Education and Skills with extensive senior management experience in the Departments of Education, Finance, and Arts, Culture and the Gaeltacht. During this time and in more recent non-executive roles she has worked on a wide range of economic and social public policy issues involving diverse stakeholders. Currently she is a Board member of Children’s Health Ireland and a member of the Board of Governors of the National College of Ireland.
Emeritus Professor Evelyn Mahon
Prof. Evelyn Mahon, Fellow Emeritus of Trinity College, Dublin, retired as an Associate Professor in the School of Social Work and Social Policy. A sociologist, she successfully led a number of funded research projects on sensitive health and social research issues., including Post-Separation Parenting (2011), and Assisted Reproductive Technology - IVF Treatment in Ireland (2014). Recognising the importance of empirical research, she founded and directed the master’s programme (M.Sc.) in Applied Social Research at Trinity College, in 1997. This work led her to establish and chair the first Research Ethics Committee in the School. She has served on several committees including the Epidemiology, Heath of the Population and Primary Care Committee of the Health Research Board.
Dr. Aideen Hartney
Dr Aideen Hartney has almost 20 years experience in conducting or managing research for the public good and is now the Director of the National Disability Authority (NDA). The NDA is a statutory body with a role to provide evidence-informed policy advice to government on matters concerning disability. The NDA conducts and commissions research on a range of subjects, including provision and evaluation of health and social care supports and services for persons with disabilities. This can include conducting research with individuals with disabilities, including those who may have complex or profound disabilities. Aideen will bring this valuable perspective, as well as her broader knowledge of the funded research landscape, to the deliberations of the Health Research Consent Declaration Committee.
Sarah Barnes Aabø
Sarah Barnes Aabø is a Parent, Carer & PPI Contributor. A Graduate of University College Cork, she holds a BA in English & History, a Higher Diploma in BFIS and a Masters Degree in English Literature. She has worked in UCC as a Research & Course Administrator. Sarah lectured in English Literature, Language & Research Methods for 8 years in an International Hospitality Management College. She is an active PPI contributor in a number of research projects in University & Patient Organisations. She is currently working with post-graduate students to contextualise the role of PPI in research and is involved in the design & delivery of PPI workshops. As a Carer her direct experience includes Childhood Cancer (Leukaemia) & Survivorship,...
Dr Ross McMullan
Dr McMullan graduated from Queen’s University Belfast in 2016. He is an Anaesthetic and Intensive Care registrar in Northern Ireland. He is currently undertaking a PhD focusing on sepsis and precision medicine in critical illness with the Critical Care and Respiratory Research Group at Queen’s University Belfast. He is particularly interested in research related to peri-operative and critical care medicine, where the consent process can be especially complex.
Dr. Aisling McMahon
Dr Mc Mahon graduated from Trinity College Dublin in 2008. After completing her Anaesthesia training in Ireland, Dr Mc Mahon undertook a fellowship in cardiothoracic anaesthesia followed by a fellowship in Intensive Care Medicine. Dr Mc Mahon works as a Consultant Intensivist and Anaesthetist at the Mater Misericordiae University Hospital. She is the research lead for the Department of Critical Care Medicine and is also a member of the hospital Research Ethics Committee and the current Secretary of the Irish Critical Care Clinical Trials Group. Her research interests lie within the speciality of Critical Care Medicine, where the consent process can often be complex.
Jim Blighe
Jim is a retired civil servant, having worked at a senior management level in the Office of Public Works for 35 years in project management roles across a number of disciplines, including managing cultural projects both in Ireland and abroad. Jim has worked on a voluntary basis for many years with a number of charities, serving as a Board member and providing advice on corporate governance, regulatory compliance, structural and HR issues. He is currently a Director of ECAS (European Citizen Action Service) based in Brussels. Following a cancer diagnosis in 2020 and treatment over the following 3 years Jim has become active as a PPI contributor to cancer research & advocacy initiatives, and initiatives promoting public participation in the...
Dr Barbara Clyne
Dr Barbara Clyne is a Senior Lecturer in the Department of Public Health and Epidemiology, School of Population Health, RCSI University of Medicine and Health Sciences. Barbara teaches Evidence-Based Health across RCSI Undergraduate Medicine and Graduate Entry Medicine programmes and is a Module co-lead on the SPHeRE (Structured Population and Health-services Research Education) PhD programme. Her research relates to improving the understanding and use of research evidence, particularly systematic reviews and other evidence syntheses, in formulating recommendations and policies, and influencing clinical practice with the goal of improving healthcare quality, safety and patient outcomes. As a mixed methods researcher, she has significant expertise as a Principal Investigator (PI) and Co-PI in the design and conduct of randomised controlled trials in...
Dr Jonathan Briody
Dr Jonathan Briody is a health economist at the School of Population Health, RCSI University of Medicine and Health Sciences, Ireland, where he is the head of Health and Economic Impact Modelling for the Centre for Chronic Disease and Population Health Research (Converge). There, he leads a team of researchers in modelling the cost-effectiveness of interventions for nationally influential chronic diseases. He is also a visiting scientist with the national public health agency of the United States, the Centers for Disease Control and Prevention (US CDC). His research has been published in international academic journals and has received awards. As the health economist for the National Screening Advisory Committee (NSAC), he also advises the Minister and the Department of Health...
Dr. Cornelius Cooney
Cornelius Cooney has over 30 years of experience in the area of anaesthesiology, intensive care medicine, with a major focus in operative and perioperative care of patients. He worked at Tallaght University Hospital until 2012, where he was head of Department for two years. Following this time, he continued patient care in Clane General Hospital, The Hermitage Medical Centre, Blackrock Clinic, the Beacon Hospital and St. Patrick’s Hospital. He completed an advanced Clinical Fellowship at Massachusetts General Hospital, lectured at Harvard University. He worked at the Shriners Hospital for Children and the Brigham and Women’s Hospital Boston. Cornelius, now retired from clinical practice, is a fellow of The College of Anaesthetists of Ireland and is registered with the IMC.
Dr. Mary Tumelty
Dr Mary Tumelty is a lecturer at the School of Law, UCC. She holds an LLB and a PhD (UL), and her research interests include medical law, patient safety, and alternative dispute resolution. Mary has a strong record in interdisciplinary and empirical research. She has presented and published her research nationally and internationally. Her work has also been funded by the Irish Research Council and the National Forum for the Enhancement of Teaching and Learning in Higher Education. In 2019, Mary was appointed to CORU by the Minister for Health. She is an external examiner for the Health Law and Ethics LLM at Nottingham Trent University, and a member of the Management Committee for EU COST Action.
Ms. Patricia O’Beirne
Patricia O'Beirne has a degree in engineering and has worked in two medical device companies in Galway, in both R&D and manufacturing. Patricia also attended the University of Galway, where she undertook a Diploma in English Literature, and a Masters in Theatre and Drama and in 2019 was awarded a PhD from the University. Recently Patricia has begun working as a postdoctoral researcher on an IRC funded project on the economics of working as a theatre practitioner in Ireland. Patricia has personal experience with caring for a family member, of parenting, and of advocating for family in the health system. Patricia has been involved with the HRB Public Review Panel since 2017, reviewing research grant application as a public reviewer.
Mr. John Woods
John is the Data Protection Officer at St Patrick’s Mental Health Services and has had an extensive career in information systems and data protection. John has a degree in Business with Information Systems Management from the Institute of Public Administration and an MSc in Information Technology Management from the Institute of Technology, Tallaght. John also holds CIPP/E and CIPM certifications. His areas of interest include data protection, privacy by design, and information governance. John sits on the Hospital’s Health Research Ethics Committee and is a member of the Information Governance Framework Hospital Committee. John was on the National Research Ethics Committee that was established by the Minister of Health to deliver an expedited process for review of COVID-19 health research.
Prof. Susan Smith
Susan is Professor of General Practice at Trinity College Dublin and works as a General Practitioner. Her research interests include improving outcomes for patients with multimorbidity and related clinical issues such as medicines management, including access to medicines. She has been the PI or Co-PI on randomised controlled trials of interventions for chronic disease management in Irish primary care settings and is associate Director of the HRB Primary Care Clinical Trials Network in Ireland. She is an editor and author with the Cochrane Collaboration and is an advocate for Evidence Based Medicine and Shared Decision Making. She has extensive experience in Evidence Synthesis and is Clinical Lead for the HRB Collaboration in Ireland for Clinical Effectiveness Reviews.
Dr. Barry Lyons
Barry Lyons graduated from University College Dublin in 1989, has a BA in philosophy & history (2007), and a PhD in Bioethics & Medical Jurisprudence (University of Manchester, 2011). He is a consultant in the Department of Anaesthesia and Critical Care Medicine at Children’s Health Ireland, Crumlin, where he is Clinical Lead in Patient Safety, and Chair of the Research Ethics Committee. He is also Director of Patient Safety at the College of Anaesthesiologists of Ireland. He is involved in many advisory groups examining consent in clinical and research practice and is on the HSE REC Reform Working Group. His research interests relate to the role of negative emotions in medicine and the interface between law and medicine.
Prof. Paul Stynes
Prof. Paul Stynes (M. Eng University of Limerick; PhD in Artificial Intelligence, Trinity College Dublin), Dean of the School of Computing at the National College of Ireland. An experienced academic leader with a history of working in both higher education and industry. Skilled in leading educational programme development, research, knowledge transfer and international collaborations. A highly motivated, action and process-oriented individual with a strong track record of attracting Government funding and is the principal investigator for the Science Foundation Ireland-funded STEM Family Learning Programme. Demonstrated research and scholarship with over 43 scientific publications in Artificial Intelligence/Machine Learning and Educational Management. Research in the medical domain relates to the use of Machine Learning to classify the brain age from MRI images.