...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.
From time to time, the HRCDC may have vacancies on the committee. If you have an interest in joining the committee, please email the HRCDC Secretariat at secretariat@hrcdc.ie.
Please note that under the Health Research Regulations, appointments to the HRCDC are made by the Minister for Health.
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.
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.
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. 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.
Ms. Alyson Bailey
Alyson Bailey qualified as an Interior Designer, but her career was punctuated by many years of being a stay-at-home mum and carer. Alyson returned to full-time education graduating from UCD in 2008 in English & Philosophy, and in 2009 with a MA in Anglo-Irish Literature & Drama. As a mother, daughter, patient and carer, she has extensive experience of a wide range of hospital and community services. She has participated on the HRB Public Review Panel since its inception, and has provided input to the review of research grant applications from a pubic representative perspective. Alyson has attended both HRB Patient & Public Involvement (PPI) workshops and acted as a peer mentor sharing her experience with future public reviewers.
Ms. Kathy Brickell
Kathy Brickell is the Lead Intensive Care Unit Research Coordinator at St Vincent’s University Hospital. She qualified as registered nurse from St Vincent’s Hospital and completed her ICU training in the Mater Misericordiae University Hospital. She has over 30 years’ experience in nursing including over 15 years of ICU experience and 4 years of retrieval medicine. In her current role she coordinates and runs clinical research projects and trials in the ICU. She actively participates and supports the work of the Irish Critical Care Clinical Trials Groups (ICC-CTG), a collaboration involving three quarters of the Irish intensive care units. The ICC-CTG brings together doctors, nurses and researchers to test new treatments that can improve outcomes for these patients.
Dr. Sheelah Connolly
Sheelah Connolly is a senior research officer at the Economic and Social Research Institute (ESRI). Sheelah brings to the committee extensive training and experience in applied health research in Ireland and the United Kingdom. For the past 15 years, Sheelah has contributed to and led on a variety of research projects in a number of areas including the social and economic determinants of health, the economics of ageing, neurodegenerative disorders and health services reform. This research has involved the use of a variety of data types including survey data, administrative data and patient health records. Through her research, Sheelah has become very familiar with issues around research ethics, data protection, patient consent.
Dr. Simon Furney
Dr Simon Furney is a Research Lecturer in Genomic Medicine and Principal Investigator of the Genomic Oncology Research Group at the Royal College of Surgeons in Ireland. His background is in bioinformatics and biomedical genomics, primarily in cancer but has also worked in Alzheimer’s disease in the past. Simon's expertise is in the analysis of genomic data from patients to try to identify disease-causing mutations. He has analysed thousands of genomes from patients using genotyping arrays and next generation sequencing technologies including whole genome and whole exome sequencing. Simon is a member of the Global Alliance for Genomics and Health, the Genomics England Clinical Interpretation Partnership and the Irish Centre for High End Computing Science Council.
Dr. Zubair Kabir
Dr Kabir is a Senior Lecturer at the School of Public Health, UCC. Zubair trained both in public health medicine and epidemiology, is actively involved in applied public health research involving large secondary datasets both locally and internationally. His expertise in Tobacco Control research and in population health epidemiological modelling studies are policy-related. He chairs the School of Public Health Ethics Committee in UCC and sits on the UCC Social Research Ethics Committee. He is also the Course Director of the Master of Public Health Program in UCC and is the lead researcher from Ireland on the high-profile Global Burden of Disease Study and also holds a Research Associate position at the TobaccoFree Research Institute Ireland.
Mr. Dan Rea
Dan Rea brings almost four decades of experience from high tech manufacturing within the private sector. He has worked with various organizations across Europe, The USA and Asia, and has gained large and varied experience in Management roles incorporating production, product research and development, resource optimization and systems. He retired from his role as Manufacturing Operation Manager in 2014, to pursue personal business interests. He has served as a council member and officer for a number of years on An Comairle na Mumhan, which is the Munster council affiliated to An Coimisiún le Rincí Gaelacha. In recent years Dan has been involved in patient advocacy, particularly with those on journeys through Cancer and Mental 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.