Data matters are human matters: summary of Living With Data findings

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Living With Data (2019-2022) is finally at an end. We have produced a report of our main findings from across our research, which included:

  • an evidence review
  • producing visualisations and accounts of specific public sector data uses
  • two waves of a survey of public attitudes to these data uses
  • a series of focus groups and interviews on the same topic.

Click here to access the report, or read on for a summary.

Inequalities play a role in people’s views about what happens to their personal data, sometimes in surprising ways

Social inequalities play a role in shaping people’s experiences of data uses, and therefore their understandings and perceptions of them. These differences mean that there is no one ‘public’ and no such thing as ‘the public’s attitudes to data uses’. The idea of a singular public obscures the differences and inequalities that characterise diverse publics and their perceptions of data uses. This means it is important to be specific and precise when we talk about public perceptions of data uses. It’s also important to look beyond headline findings and single studies about public opinions of data uses and regularly consult diverse publics to understand their views.

Disabled people were more positive about health data re-use than people who did not have a disability;
White people trusted the police’s data uses more than Black, Asian and other racially minoritised people;
Older people trusted their GP more than the youngest 18-24 age group;
LGBTQ+ people trust health organisations less than heterosexual cisgendered respondents.

Some people are concerned about some data uses, but not all people, and not all data uses. There is some support for data uses, if they are deemed to be for the public or social good. Alongside inequalities, the context of a data use and who is involved in it play a role in the amount of concern that exists about specific data uses.

With that said, people from different groups don’t want data uses to have negative consequences for people from disadvantaged or minority communities. This concern that data uses might reinforce inequalities could be seen as a form of data solidarity. Data policymakers and data practitioners need to acknowledge that there is widespread concern about data uses reinforcing inequalities. They need to understand the potentially discriminatory impacts of different data-driven systems, in order to be able to overcome them.

Participants spoke about the need for data uses to be inclusive ‘for all communities’, sometimes listing groups who they perceived to be excluded from certain processes.

Concern, confusion and the role of commercial companies matter

People are concerned about commercial companies accessing, using and profiting from data initially gathered for the social or public good, such as health data. Sometimes concern results from confusion, caused by lack of clarity about the nature of commercial company involvement. Clear, accessible, human-centred communication about data uses, which genuinely aims to enable understanding in the people whose data feeds into data-driven systems is important. However, while more clarity about commercial involvement in public sector data uses may diminish confusion, it won’t necessarily diminish concern. This is because the people who know most about data uses are the most concerned about them. In other words, the more people understand data uses, the more negative their attitudes towards them are. This suggests that if data uses continue unchanged, the public will continue to be concerned, regardless of how clear and accessible communication about them might be. In short, data uses need to change, in order for there to be greater public support for or confidence in them.

63% of survey respondents disagreed or strongly disagreed with the statement ‘I support corporate profit-making from personal data.’ 16% agreed or strongly agreed, with only 5% strongly agreeing.
Commercial companies profiting from personal data was the 4th biggest concern from a list of 13 concerns, in which funding for the NHS and the economic costs of Covid-19 were the biggest concerns

One particular way that public sector data uses could change relates to the involvement of commercial companies. public sector data practitioners should consider alternative ways of delivering data-driven services. This will not be easy, as global technology companies monopolise the provision of particular technologies and technical infrastructures, but it is not impossible. Such changes to the data ecosystem may produce the changes in public opinion that policymakers and practitioners are keen to see, such as greater support for or confidence in data uses. 

Human-centred data uses

In short, data uses need to change, so they eliminate harms and are in the public or social interest. Sometimes, in order to do these things, specific data uses need to stop, such as those which are ostensibly pro-social but from which commercial companies profit, or those that systematically discriminate against already disadvantaged groups.