The use of personal NHS information for research purposes can prove highly contentious. This project examines current arrangements in information governance, and how we can best balance the rights of service-users to privacy against the benefits conferred by making health care information more freely available.
The Government’s plans for reforming the NHS include significant changes to information governance procedures – that is, the standards governing the way data are used.
The Department of Health consultation document, An Information Revolution, for example, considers proposals about the way in which information is accessed, collected and analysed, as well as measures intended to give service-users more control over information about their care. This follows a consultation document issued by the Information Commissioner’s Office in 2010, which examines how data can be shared between organisations and with third parties (download the ICO's final report, Data sharing code of practice, published in May 2011).
This project explores how we can best balance the rights of service-users to privacy against the benefits of making health care information more freely available
The Nuffield Trust has an active interest in this area of policy, not least because much of our own research depends upon the use of anonymous or pseudonymised health care data.
As part of a work-stream on these issues, in 2010 we invited Dr Sarah Clark and Professor Albert Weale from University College London (UCL) to present a paper on the social values behind information governance arrangements at a Nuffield Trust seminar.
Their subsequent research report: Information governance in health: An analysis of the social values involved in data linkage studies, was published in August 2011. An accompanying research summary: Access to person-level data in health care: Understanding information governance, by Dr Benedict Rumbold, Dr Geraint Lewis and Dr Martin Bardsley was also published at this time. In related blogs, Dr Benedict Rumbold and Dr Sarah Clark reflect on the research findings and consider alternative models of data governance.
Building upon this work, the Nuffield Trust will continue to undertake research exploring how health care information is accessed and governed in the UK. This investigation will explore the use of consent in the existing governance framework and demonstrate further arguments for the use of pseudonymised data.