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Ehealth in Ireland Social and Ethical Values in Irish Policy on Ehealth No eHealth in Ireland Social and Ethical Values in Irish Policy on eHealth No. 3 of 2021 Dr. Tim Jacquemard, RCSI and SFI Researcher-in-Residence 31 March 2021 Abstract This Spotlight examines the social and ethical implications of eHealth applications in Ireland. eHealth is at an early stage of development in Ireland and is considered a critical enabler of the desired transformation of the Irish health system into a more integrated, patient centric, and efficient system. The first chapter examines the concept of eHealth. The second chapter identifies ethical and social opportunities and challenges associated with the technology. The third chapter discusses eHealth and policy in Ireland. The Spotlight concludes with policy issues. Library & Research Service | eHealth in Ireland 1 Contents Glossary ......................................................................................................................................... 3 Summary ........................................................................................................................................ 5 Background ..................................................................................................................................... 7 eHealth ........................................................................................................................................... 8 Methodology ............................................................................................................................... 8 What is eHealth? ......................................................................................................................... 8 Why promote eHealth? ............................................................................................................. 11 What is the current state of development of eHealth in Ireland? ................................................ 15 What is needed to successfully implement eHealth? ................................................................. 17 CASE STUDY: care.data .............................................................................................................. 19 Social and ethical opportunities and challenges of eHealth technology ......................................... 21 Methodology ............................................................................................................................. 21 When to address ethical and social challenges in technology? ................................................. 22 What values to consider? .......................................................................................................... 24 CASE STUDY: COVID Tracker App.............................................................................................. 37 eHealth Policies ............................................................................................................................ 40 Methodology ............................................................................................................................. 40 Government .............................................................................................................................. 40 Department of Health ................................................................................................................ 40 Other departments .................................................................................................................... 42 Health Service Executive .......................................................................................................... 42 eHealth Ireland .......................................................................................................................... 43 Other governmental organisations ............................................................................................ 44 Non-Governmental Organisations ............................................................................................. 44 Houses of the Oireachtas .......................................................................................................... 45 European Union ........................................................................................................................ 47 Conclusions: Ten policy issues from an ethical and social standpoint ........................................... 49 Library & Research Service | L&RS Spotlight 2 This L&RS Spotlight may be cited as: Oireachtas Library & Research Service, 2021, L&RS Spotlight: eHealth in Ireland – Social and ethical values in Irish policy on eHealth Legal Disclaimer No liability is accepted to any person arising out of any reliance on the contents of this paper. Nothing herein constitutes professional advice of any kind. This document contains a general summary of developments and is not complete or definitive. It has been prepared for distribution to Members to aid them in their parliamentary duties. Some papers, such as Bill Digests are prepared at very short notice. They are produced in the time available between the publication of a Bill and its scheduling for second stage debate. Authors are available to discuss the contents of these papers with Members and their staff but not with members of the general public. © Houses of the Oireachtas 2021 Acknowledgements The author would like to thank Ms Anne Timoney and Mr Diarmaid O’Sullivan of the Oireachtas Library & Research Service for their work as internal reviewers of this paper. The author would also like to thank Ms Mary Fitzsimons the eHealth Lead and a funded Investigator at FutureNeuro SFI Research Centre, Royal College of Surgeons Ireland (RCSI), as well as Prof. Bert Gordijn, Director of the Institute of Ethics at Dublin City University, Ireland, for their assistance as external reviewers. This publication has emanated from research supported in part by a research grant from Science Foundation Ireland (SFI) under Grant Number 19/PSF/7606. The author, Dr. Tim Jacquemard, produced this publication whilst Researcher-in-Residence at the Oireachtas Library & Research Service and is available to discuss his work on eHealth technology with interested parties. Dr. Jacquemard may be contacted at the FutureNeuro SFI Research Centre at [email protected]. FutureNeuro is the SFI Research Centre for Chronic and Rare Neurological Diseases. FutureNeuro is supported in part by a research grant from Science Foundation Ireland (SFI) under Grant Number 16/RC/3948 and co-funded under the European Regional Development Fund and by FutureNeuro industry partners. Library & Research Service | eHealth in Ireland 3 Glossary Artificial Intelligence (AI): software that allows a device or application to complete a task without human interference (autonomously). Big data: extremely large, complex datasets with great diversity: these datasets are generated, distributed and collected with high speed. Clinical decision support systems: software to assist healthcare professionals with making clinical decisions at the point of care. The support is based on patient data. Data analytics: the processing of data to unlock insights and find new information. Data Protection Act 2018: Irish national law on privacy and data protection. The act also includes the Irish interpretations of implementing General Data Protection Regulation (GDPR). eHealth: eHealth is the use of information and communication technology (ICT) to improve prevention, diagnosis, treatment, monitoring and management of health-related issues and to monitor and manage lifestyle-habits that impact health. Electronic health record: Systems to store medical records of patients digitally. Electronic health records can contain a wide range of information, including demographics, clinical history, and billing information. ePortals: Electronic patient portals offer patients, or their carers, secure access to electronic health records and ability to communicate with healthcare staff and/or allows them to input to their healthcare record. ePrescribing: a system to digitally transmit medical prescriptions from healthcare professionals to pharmacies. General Data Protection Regulation (EU 2016/679) (GDPR): European Union (EU) law on data protection and privacy in the EU and the European Economic Area. Genomics: the study of a person’s complete set of DNA (all of a person’s genes – the genome). Health literacy: the ability to find and use information to make decisions about health-related issues and lifestyle habits influencing health. Individual health identifier (IHI): is a unique number to identify individual health service users accessing health and social care services. Information and communication technology (ICT): an umbrella term to describe any communication device or application, including smartphones, computers, satellite systems. Integrated care: model of care where healthcare organisations structurally coordinate health services across a population to present that population with continuity of care. Internet of Things: a network of objects connected with sensors that interact and exchange data with each other and other systems over the internet. Message board: a site where people can post messages and have online discussion. Mobile health (mHealth): medicine and public health supported by mobile devices, such as smartphones, tablets and wearable devices. Library & Research Service | L&RS Spotlight 4 Multimorbidity: living with two or more chronic conditions at the same time. The number of people affected by multimorbidity
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