In order for the information society to realise its full potential, personal data has to be disclosed, used and often shared. This book explores the disclosure and sharing of data within the area of healthcare. Including an overview of how health information is currently managed, the authors argue that with changes in modern society, the idea of personal relationships with a local GP who solely holds and controls your health records is becoming rapidly outdated. The authors aim to encourage and empower patients to make informed choices about sharing their health data. They do this by developing a three-stage theoretical model for change to the roles of the NHS and the individual. The study generates debate to stimulate and inspire new models and policy, and to provoke new visions for the sharing of healthcare data. Such discussion is framed through an exploration of the changing concept of 'privacy' and 'patient control' in healthcare information management. The volume draws on best practices from Europe and the USA and combines these to form a suggested vision for the UK as an early adopter of change. The volume will be essential reading for academics in the field of privacy and data protection, as well as healthcare and informatics professionals across different jurisdictions.
Table of Contents
Foreword, Philip Leith. Part I Introduction and Background: Individual privacy versus collective transparency; Sharing healthcare data in Europe and the USA. Part II The Problem: The theoretical problem. The three issues necessitating change: mindset, information, innovation; The practical problem. Historical role reversal: law and technology as vehicles with the wrong drivers. Part III The Proposed Solution: The theoretical solution; The choice of control: putting the solution into practice. Bibliography; Index.
Christina Munns is an informatics professional, specialising in the strategic application of information governance and security. She has worked within the national health and care informatics arena for the last decade, holding senior positions across strategy, policy and operations. Recent positions have included Theme Lead and Steering Group member on Dame Fiona Caldicott’s 2013 Information Governance Review and Programme Head for Dame Fiona Caldicott’s Independent Information Governance Oversight Panel. She was Lead Author of the Confidentiality Guide and managed the development of the 2014 statutory Code of Practice on Confidential Information for health and social care. National appointments include membership of the Care Quality Commission’s National Information Governance Committee (CQC’s NIGC), acting in an advisory capacity to the CQC Board. Subhajit Basu is Associate Professor in Cyber Law at the School of Law, University of Leeds and a Fellow of the Royal Society for the Encouragement of Arts, Manufactures and Commerce (FRSA) and Research Fellow of African Centre for Cyberlaw and Cybercrime Prevention (ACCP). His principal research and writing is on ’emerging technologies’, especially in the context of the ’regulation of cyberspace’. His scholarship focuses on the regulatory challenges and gaps brought about by the development, use and ubiquitousness of such technologies, in what for many is the unique legal environment of the Internet. As a ’realist’ he cares about the opportunities created by these technologies, in particular ensuring an effective adaptive regulatory framework. He is author of the critically acclaimed monograph titled `Global Perspectives on E-Commerce Taxation Law’. In addition, he is author of a large number of articles and chapters in scholarly journals and books covering a variety of topics including data protection, privacy, freedom of expression, cybercrime, digital divide, patent e-commerce consumer protec
"The question of how to balance individual privacy interests and community interests in the exploitation of healthcare data is one of the most vexing issues facing privacy scholars. In this important contribution Munns and Basu, by putting patient choice and technology at the centre of the debate, make a key contribution that must be read by all interested parties." - Andrew Murray, London School of Economics, UK
"I found this study of health informatics to be an invaluable addition to the literature on technology regulation and the disruptive capacity of technological innovation, demonstrating our need to re-evaluate core concepts of privacy and data ownership under the forces of information technology." - Robert Lee, University of Birmingham, UK
"Writing in the shadow of 'care.data' the authors suggest that, by an imaginative use of online portals and platforms, the collective interest in sharing healthcare data can be reconciled with the individual interest in controlling access to one's personal health records. The proposal in this timely book merits serious consideration." - Roger Brownsword, King's College London, UK
"This book provides a very important contribution to the debate about consent and the use of health information that we should be having increasingly with the public. Transparency is not only ethically correct but also incredibly empowering, breaking down barriers to information sharing which so often jeopardise safe care. This novel proposal unites traditional privacy theory with innovation, offering mechanisms to make such empowerment a reality." - Dame Fiona Caldicott, FRCPsych, FRCP; National Data Guardian; Chair, Independent Information Governance Oversight Panel (IIGOP)