Champion the use of personal data for the public good, subject to appropriate safeguards, and encourage transparency about data sharing and use so that professionals and public understand the potential benefits, risks and uncertainties
Mandate the development of NHS systems for comprehensive data collection, curation and access for clinical purposes, including a national genomic database
Provide incentives for data sharing within the NHS, and put in place proportionate and responsible safeguards e.g. data access agreements, sanctions for breaches and data safe havens
As a society, we generate vast amounts of data, with the boundaries between ‘health’ and other types of data becoming increasingly blurred – our supermarket till receipts and mobile phone records may give away more about our lifestyle habits than we dare to admit to our GP. Effective healthcare provision must include creating, maintaining and learning how to use dynamic ‘real-time’ databases of patients that include genetic information, information about disease experience, treatment and natural history as part of everyday clinical practice, as well as to drive ongoing health research.