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idea of personal relationships with a local GP who solely holds and controls your health records is becoming rapidly outdated.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