Sharing data for public good: How can privacy be protected?

• Inquiry:The right to privacy: Digital Data
• Read the call for evidence
• Science and Technology Committee

Sharing data across and between public bodies and other organisations could create a number of social, environmental and economic benefits— improving, for example, healthcare services and facilitating insights which progress research and innovation. There are, however, risks posed by increased data sharing, including individuals' rights to privacy. It has also been reported that poor data governance has led to an "erosion in public trust in the use of data".

On 22 June 2021, the Government published its draft strategy ‘Data saves lives: reshaping health and social care with data’, proposing "a new duty to share anonymous data safely and appropriately across the entire health system". With real-world applications, including NHS Digital's plans—for research and planning purposes—to make greater use of the medical data of patients in, the cross-party Committee will be examining the Government's proposals to ensure that data protection is maintained.

Chair's comment

Chair of the Science and Technology Committee, Rt Hon Greg Clark MP, said:

"The benefits of effective data sharing could be huge—enabling researchers to spot patterns in patient data, and advancing knowledge in the fields of science and medicine. However, pooling and sharing data gives rise to important questions of privacy, as well as the extent to which individuals have ownership of data that is personal to them.

"We will be examining how the Government can combinethe right to privacy with effective data sharing."

Call for evidence

• Submit your evidence here

The Committee is therefore seeking written submissions until Friday 28 January addressing any or all of the following topics:

• the potential benefits, including to research, to effectively use and share data between and across Government, other public bodies, research institutions and commercial organisations, and the existing barriers to such data sharing;
• the extent to which data issues are appropriately addressed by the Government’s National Data Strategy, its draft strategy, Data saves lives: reshaping health and social care with data, and its consultation Data: a new direction;
• the ethics underpinning the use and sharing of individuals’ data in health and care contexts;
• the extent to which appropriate safeguards and privacy are applied in the usage and sharing of individuals’ data; and
• the effectiveness of existing governance arrangements, e.g. the Centre for Data Ethics and Innovation.

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