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idea of personal relationships with a local GP who solely holds and controls your health records is becoming rapidly outdated.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.
"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)
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.