IPPOSI Citizens’ Jury Oversight Panel Members
Prof. Jane Suiter, Associate Professor, Dublin City University
Jane is a deliberation expert and is the senior Research Fellow on the Irish Citizens’ Assembly on gender equality and is co-PI on the Irish Citizen Assembly (2016-2018) and the Irish Constitutional Convention (2012-2014) and a founder member of We the Citizens (2011), Ireland’s first deliberative experiment. She was the joint winner of the Brown Democracy Medal in 2019; the President’s Award for Research 2019 and the Irish Research Council’s Researcher of the Year 2020.
Prof. Jane Grimson, Former Chairperson, Health Research Board
Jane Grimson is Emeritus Professor of Health Informatics at Trinity College Dublin. She is the former Director of Health Information and Acting Chief Executive of the Health Information and Quality Authority.
Robert Joyce, Patient Representative, PPI Expert, Assistant Researcher, NUI Galway
We are living in an increasingly digital world and in Ireland our medical details will eventually be recorded electronically. Robert’s hope for this Jury is that they will help us decide how this information should be protected and used. Robert is a representative from the Irish EUPATI National Platform.
Rachel Flynn, Director of Health Information and Standards, HIQA
Rachel was appointed as Director of Health Information and Standards (HIS) in September 2015. She joined HIQA in November 2007 and has held various positions such as the Health Information Manager in Quality and the Head of Healthcare Assurance Programmes in Healthcare Regulation. In her current capacity as Director of HIS, she and her team are currently responsible for implementing surveys of people using health services under the National Care Experience Programme, setting standards and developing guidance for health and social services and setting standards for all aspects of health information and monitoring compliance with those standards.
Dr. Pamela Hussey, Dublin City University
Dr Pamela Hussey joined the academic community later in her career and was a practicing nurse for twenty years. Currently she is chair of the National Standards Authority of Ireland Health Informatics Standards Consortium (NSAI HISC) and Director of the Center for eIntegrated Care (CeIC). Pamela is passionate about patient centered care and her research is focused on how to design systems which have the scope to connect health across communities and services which are fit for purpose. She is currently engaged in a study with a research fellow under the Marie Curie EliteS standards fellowship focusing on development of systems for individuals with Intellectual Disability.
Michelle Kearns, Chief information Officer, CareDoc
Healthcare data is a special class of data because it contains highly sensitive information about our human weaknesses. It must be guarded more carefully than other personally identifiable data. From Michelle’s technical and operational experience of healthcare service provision and data, and as a patient herself, this will add a perspective and contribution to the citizens’ jury.
Prof. Mark Little, Professor of Nephrology, Clinical Medicine, Trinity College Dublin
Mark has over a decade’s experience of running a national biobank in conjunction with a national patient organisation. The ability to integrate personal health information from the participants with research outcomes from the samples is critical and difficult to achieve in Ireland, not least because of the blind spot that exists in the current Health Research Regulations with respect to biobanks.
Dr Avril Kennan, Chief Executive Officer, Health Research Charities Ireland
While the use of personal health data has the power to transform healthcare, much of it languishes in paper files in the Irish health service. As we strive to change that, the IPPOSI Citizens’ Jury on patient data is a powerful approach to help ensure that the views of patients, their families and members of the public are heard, understood and used to guide the big decisions needed.
Vicky McGrath, Chief Executive Officer, Rare Diseases Ireland
Enabling personal health information (PHI) to be stored and shared in a simple and safe manner that can be controlled by each individual is critical for the future development of healthcare in Ireland. PHI will enhance patient care and safety, enable better healthcare planning and provide opportunities for patients to engage in research.
Kate Morris, Head of Campus Engage, Irish Universities Association
Kate works on behalf of the universities of Ireland to create systemic change across higher education practice and policy – to ensure research, innovation, teaching and learning outcomes, are driven with and for society – to address our greatest societal challenges.
Prof. Gaye Stephens, Lecturer on the MSc in Health Informatics, Trinity College Dublin
Well designed and useful digital health solutions stem from meaningful engagement with end users and those affected by these solutions. Irish citizens’ views on sharing and accessing digital health information will make valuable contributions to the design of digital health solutions for Ireland. Prof Stephens has a background in Computer Science and specialisation in health informatics, particularly ethical information modelling for Electronic Health Record(EHR) and Artificial Intelligence(AI) readiness.