Access to person-level data in health care: Understanding information governance

How we govern the use of health care data is of growing concern to the public, researchers and policy-makers alike.  In recent years, the quality and volume of data held on individual patients has increased considerably. Regulations and guidance help to protect individual privacy and confidentiality. However, overly restrictive rules can also stifle valuable research and analysis.

Currently, information governance arrangements are usually interpreted as requiring data analysts either to obtain explicit consent from individuals for the use of their data, or else they must render all person-level data completely anonymous.

21 per cent of respondents to an Ipsos MORI poll thought it was never acceptable for researchers to use personal health care information without consent

The current framework does allow the gatekeepers of NHS data to weigh up the rights of the patient to privacy and consent, against the rights of the public to benefits from research, and grant the use of data without the consent of each individual. One advantage of this ‘public benefit’ approach is that it is able to deal with studies that do not fit into the typical ‘consent or anonymise’ model – such as those involving pseudonymous data and data linkage.

Given that the UK data governance policies are currently in a state of flux, there is an opportunity to advance the ‘public benefit’ approach to information governance. This may lead to benefits for researchers, patients, and the public alike.

Research report: Information governance in health

The Nuffield Trust commissioned a review to explore the current information governance regulations and reflect on the social values that underpin them.

The review was led by Dr Sarah Clark and Professor Albert Weale from the Department of Political Science, School of Public Policy, University College London, and the findings have been published in the research report: Information governance in health: An analysis of the social values involved in data linkage studies.

Research summary: Access to person-level data in health care

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, showcases the findings of the research report and discusses these in the context of current government policy and health care research practice.  An example case study is given to highlight the issues faced by those researching this area.

As data governance arrangements continue to evolve in England and other countries, the research summary attempts to move the debate forward by examining an alternative public benefit framework for considering information governance. This raises a number of important questions, including:

• How can we define what constitutes a ‘public benefit’?
• What safeguards are necessary to ensure that patients’ rights are protected within a ‘public benefit’ model?
• How can obligations arising from the rights of patients be balanced against the benefits accrued to the public at large?

These publications are the first output from a wider project being conducted by the Nuffield Trust: UK health care information: an examination of information governance arrangements.