The NHS Information Revolution: ‘Choice of Control’ to ‘Choice’ and ‘Control’

Abstract

This paper provides a novel and critical analysis of the necessary and important balance between ‘individual privacy’ and ‘collective transparency’. We suggest that the onset of the Information Revolution has created a dilemma for the National Health Service (NHS) in terms of how it addresses its obligation to use information to improve best practice in healthcare for society (‘collective transparency’) whilst also keeping sensitive personal information confidential (‘individual privacy’). There is clearly a need to consider both whether the NHS is balancing this critically important informational relationship and whether its approach is fit for purpose. We argue that the NHS's ‘proxy-individual’ information guardian role could inadvertently mask individuals' intended roles, effectively circumventing autonomy-based laws by limiting the power of individuals to be autonomous. In this article we have identified three issues – first the prevailing ‘Mindset’ (the ‘M’) of ‘privacy’, which is viewed as individualistic, resulting in an overpowering concept of confidentiality; second, the quality and control of Information (the first ‘I’); and third, the concept of innovation (the second ‘i’), which is being used as a ‘solution’ rather than a vehicle for transparency. Indeed, transparency is our target of ‘best practice,’ and we suggest that individual privacy and collective transparency are best embedded within a complementary privacy framework that offers a better fit than the current split of control between the roles of the NHS and the roles of the individual. It is suggested that when facilitated by transparency, ‘control’ and ‘privacy’ form a continuum, aligning through the desire for choice. Therefore, the choice of control could facilitate control and choice. Together, they could replace the concept of privacy by empowering ‘informed patients’ to support the NHS's ‘No decision about me, without me’ pledge.