ABSTRACT
This chapter provides a critical analysis of how healthcare data is handled in Europe and the USA, to look for best practice which could be applied within a framework such as that in the UK. It explores important aspects of healthcare data in the United States with its predominantly privately funded business model. The chapter analyses the role of the individual in controlling these data and reflects on how well these data are used and the key barriers to wider use. It argues that firstly there must be a change of mindset around 'privacy', moving privacy from an individualistic concept to a societal concept. The balance required between 'individual privacy' and 'collective' transparency' reflects this. The confusion between types of data and the benefits of 'collective transparency' versus 'individual privacy' is confounded by a lack of communication with the public and a lack of public awareness campaigns.
