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A UK-wide public dialogue exploring what the public perceive as ‘public good’ use of data for research and statistics

Published:
4 October 2022
Last updated:
2 December 2022

Introduction

Data about people is generated every day. A record is created when people use a public service which may include their demographic information such as date of birth, age, sex and gender, and further information related to the reason for using that service. This administrative data can lawfully be repurposed for statistics. This type of data can also be used for research, if the purpose meets a number of conditions including being de-identified before it is accessed by a researcher, and serving public good, a condition enshrined into law with the Digital Economy Act 2017 (DEA).

Public engagement and involvement exploring how the public feel about storing, sharing and examining administrative data over the past decades has indicated a general public consensus that data can be used in these ways when used in the name of public good (Aitken et al. 2019; Atkinson et al. 2017; Elias 2021; Kispeter 2019; Scott 2018; Waind 2020).

The question remains as to what the public perceive as ‘public good’ use of this data when used for research and statistics. Under the DEA 2017 legal framework, ‘public good’ (sometimes referred to as ‘public interest’ or ‘public benefit’) is broad. Legal public good uses of data are: to provide evidence for public policies, services or decisions which benefit our economy, society, or quality of life; to extend understanding of social, or economic trends and events; or to improve quality or understanding of existing or proposed research (UK Statistics Authority, 2018).

The last few years have seen progress in attempting to measure or evaluate the public good use of personal data. A 2018 consultation with professionals from the public and voluntary sectors by Involve, Understanding Patient Data, and the Carnegie UK Trust, generated a framework to evaluate whether public benefit has been delivered by a data sharing initiative in the context of health data. A checklist included criteria such as whether data use demonstrates positive outcomes, delivers what people need or want, or generates tangible, visible improvements for people. Those attributes quantified public good.

Their investigation recommended that the public ought to be part of these discussions to create a shared understanding of what public good means with regard to data use. The public should be involved in shaping the future of (their) data use itself. This principle was a key message from the 2022 DARE UK (Data and Analytics Research Environments UK) dialogue with members of the public: that great efforts should be made to meaningfully include members of the public in decisions about how data about them is used.

Building on that work, ADR UK (Administrative Data Research UK) and the Office for Statistics Regulation (OSR) formed a partnership this year (2022) to explore public perceptions of ‘public good’ use of data and statistics. This conversation aimed to understand public perceptions of both data use for research and of statistics, which is the information produced from analysis and interpretation of data.

ADR UK is a programme made up of four national partnerships across the UK, transforming the way researchers access the UK’s wealth of public sector data to enable better informed policy decisions that improve people’s lives. Key to its mission, is the joining up of the abundance of administrative data already being created by government and public bodies across the UK and making it available to approved researchers in a safe and secure way. ADR UK is therefore bridging the gap between government and academia enabling government policy to be informed by the best evidence available. ADR UK is funded by the Economic and Social Research Council (ESRC), part of UK Research and Innovation (UKRI).

OSR, informally known as the ‘UK’s statistics watchdog’, is the regulatory arm of the UK Statistics Authority, which is an independent statutory body that operates at arm’s length from government as a non-ministerial department. OSR’s vision is simple: statistics should serve the public good. OSR’s priorities are to protect the role of statistics in public debate, uphold the trustworthiness, quality, and value of statistics and data used as evidence, and to develop a better understanding of the public good served by statistics.

Both organisations have conducted investigations into public feeling about data or statistics use (Cowan & Humpherson, 2020; Waind 2020). Their respective reviews identified a gap in the evidence of exactly what the public perceive to be data or statistics serving the public good.

ADR UK and OSR have therefore collaborated to develop a UK-wide public dialogue with online and in-person workshops in order to build on existing knowledge and create a resource exploring the primary question of what do the UK public perceive as ‘public good’ use of data and statistics? The project also explored the following sub-questions:

  • How should ‘public good’ be defined and/or measured when making decisions about sharing data for research?
  • What uses of data and statistics are considered to be in the ‘public good’?
  • Are some uses of data and statistics ‘more’ in the public good than others?
  • Are there conceptual differences between the phrases public good and public interest, public benefit, public welfare, common good, greater good, societal benefit or other similar phrases (which are sometimes used interchangeably in the literature)?
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