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The promise and peril of big data for health research in Ireland

Conference | The promise and peril of big data for health research in Ireland: Acting on the results of Palliative and End of Life Care in Ireland (PELCI) study 

‘Big’ data may be particularly valuable in guiding development of palliative and end of life care – this event presented findings from the PELCI study, and shared experts’ insights on the challenges and opportunities of using big data for health in Ireland.

Resources Available: Agenda and speaker biographies |Slide decks

December 2022

The promise and peril of big data for health research in Ireland: acting on the results of the Palliative and End of Life Care in Ireland (PELCI) study

Held at Wynn’s Hotel in Dublin 5 December 2022

Health care has now entered an era of ‘big data’, in which unprecedented volumes of information are collected routinely on patients and their families, on health care workers and providers, and on service use and unmet need. ‘Big’ data may be particularly valuable in guiding the development of palliative and end-of-life care, due to the challenges conducting primary research studies and the substantial routine data collection on people with serious illness.
At this event there were lively discussions on the challenges and opportunities of using ‘big data’ for health care research in Ireland – thanks to the great mix of people in the room, and the thought-provoking contributions from our expert speakers. Download the programme and speaker biographies here.
The morning included a Health Research Board presentation on the coming European Health Data Space, which promises to be a game-changer for health data in Ireland and across the EU, and we heard about recent initiatives in the UK that can inform the Republic of Ireland’s efforts at better data use and linkage of data for practice, policy and research.

Presentation slides:

The PELCI study: key findings for research, policy and data

Dr Peter May, Research Assistant Professor in Health Economics, Centre for Health Policy and Management, and The Irish Longitudinal Study on Ageing (TILDA), Trinity College Dublin

Further information can be found on the PELCI study website

Big data for research in Palliative Care: Challenges and opportunities

Joanna Davies, Cicely Saunders Institute, Kings College London

Overview of the European Health Data Space

Dr Sarah Craig, Head of National Health Information Systems, Health Research Board

Trusted Research Environments; benefits and perspectives from Northern Ireland

Dr Frances Burns, Northern Ireland Trusted Research Environment (NITRE)