The House of Commons Science and Technology Select Committee exists to ensure that UK government policies and decision-making are based on solid scientific evidence and advice. In December 2021, the House of Commons Science and Technology Select Committee launched a new inquiry and call for evidence, The right to privacy: digital data.
The terms of reference of the inquiry are as follows:
Effectively sharing data across and between Government and industry has a number of potential benefits, but there are risks to doing so too. A key issue is public trust and the need for transparency with respect to how individuals’ data is used and shared. The Government’s December 2020 National Data Strategy and its more recent draft strategy, ‘data saves lives: reshaping health and social care with data’, address aspects of this. Specifically, the latter sets out an aim to “share anonymous data safely and appropriately across the entire health system”, which has raised concerns amongst patient groups and some privacy campaigners.
We argued that:
- Data as a form of infrastructure is integral to our society. Because of this, major national data assets stewarded by government should be viewed as a kind of public good, and must be representative of our society and also benefit all society.
- Data ecosystems flow across sectors and across domains, and so a category such as ‘health data’ can be an artificial distinction: patient records could potentially be used for non-health purposes; and data such as mobility data (about traffic or public transport use) can be used for public health interventions.
- Because of this, it is important that the government’s data practices are joined-up across across departments for the full benefits for public health. Similarly, the loss of public trust in the government’s data practices in one domain, such as health data, may have unintended consequences for public trust in the government’s data practices in other domains.
- The government is one of the largest and most powerful agents in a national data ecosystem, collecting and stewarding significant datasets across sectors and communities. Consequently, the data practices of the government matter for how a country’s national data ecosystem develops overall, impacting other sectors and domains too.
As the inquiry developed and heard evidence on public trust in government practices around health data, in May 2022 we submitted supplementary evidence. You can read it on the inquiry website (HTML) or download the PDF. We raised the following areas of concern:
- As the government does more with data, it is vital that both the public sector workforce and the general public have confidence in understanding what the government is doing with data. But our new research has found that the UK government approach to data literacy across UK society and economy (including within the public sector) falls short of meeting this aim.
- In 2021 we advised on a rapid NHS public dialogue activity around Test & Trace data practices, intended to inform government policy. Our experience was that the exercise was conducted well, with good consideration for accessibility, equity, diversity and inclusion; but a significant delay of almost a year in publishing the findings risks diminishing the value of the exercise and public perceptions of government accountability for health data policy and practices.
- Data governance and data literacy
- Potential benefits and existing barriers to health data sharing
- Data issues in key government data strategies and consultations, such as the National Data Strategy (Department for Digital, Culture, Media & Sport 2020), Data saves lives (Department of Health & Social Care 2021), and Data: a new direction (Department for Digital, Culture, Media & Sport 2021)
- Ethics and health and care data sharing
- Data safeguards and privacy
- How data policy can support health data research
- Public sector governance arrangements (including independence and accountability, and the need for data assurance and data institutions)
The Select Committee is expected to publish a report of its findings in autumn 2022.