Patients should be empowered by “the choice of control” – that is the key message addressed in the newly released book, Privacy and Healthcare Data.
Written by associate professor in Information and Technology Law at the University of Leeds, Subhajit Basu and the university’s informatics consultant Christina Munns, the thought-provoking book explores the changing concept of ‘privacy’ and ‘patient control’ in healthcare information.
The book is a culmination of four years of research where the co-authors cover a number of topics including privacy and data protection, sociological and psychological issues, information governance issues (analysing NHS information governance policies) and an in-depth look at Care.data.
Basu, who for the past few years has been working extensively on “data protection” issues from health (e-health) to regulation, said his research focused on “emerging technologies”, while Munn explored how that law has been applied.
“We wanted to write this book to generate debate and to provoke new visions for the sharing of personal and confidential medical data”, Basu said.
“Our argument is simply to realise the full potential of our inevitable lives “online,” personal and confidential information, including health information, must sometimes be shared.”
Within the 240-page book, 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.
When it comes to legal and regulatory aspects of sharing healthcare data within the NHS, Basu said the research revealed there is considerable uncertainty particularly with what is regulated, who is responsible for such regulation and which laws apply.
“There is also a lack of clarity as to the subsistence and ownership of proprietary rights of data stored, processed and generated in this context.”
“The concept of ‘privacy’ should move away from the current NHS’s paternal ‘proxy-individual’ conception of privacy where the NHS make information sharing decisions on behalf of the individual.”
Basu said it should move towards more optimal sociological conceptions of control, where individuals make sharing decisions themselves based on transparency around the risks and benefits of themselves and society.
“The discussion in the book is framed through an exploration of the changing concept of ‘privacy’ and ‘patient control’ in healthcare information management. We looked the into best practices from Europe and the USA, combined it to form a vision for the UK.”
The book has been reviewed by Dame Fiona Caldicott, national data guardian for the NHS together with professor Andrew Murray from the London School of Economics and professor Roger Brownsword from King’s College London.