Department of Sociological Studies researchers have published an extensive review of research into public understanding and perceptions of data gathering and analysis. The full review and an accessible summary can be found here.
Living With Data, a research project funded by The Nuffield Foundation, aims to understand different people’s knowledge and perceptions of ‘data practices’ in different domains of everyday life and their perspectives on how data practices could be improved. Led by Professor Helen Kennedy from the Department of Sociological Studies, the research project comprises of this review and original empirical research.
From hundreds of references analysed, the review focuses on around 100 empirical studies from the past five years, within a range of academic disciplines and grey literature. Findings include:
- People have some knowledge of data practices, but methods for finding out about people’s knowledge are not well developed;
- People are concerned about data gathering and analysis, but they’re not only concerned. They hold contradictory views, recognizing benefits while feeling concerned about potential harms.
- Emotions play an important role in whether people trust organisations with their data. Some sectors (like health) are more trusted than others (like social media). Trust and distrust in data practices can be felt together.
- Context matters. Who gathers data, what and whose data is gathered, for what purposes and with what effects, influences people’s attitudes.
- Fairer data practices than current ones would include honesty, transparency, safeguards, accountability and rights, and personal control.
- Social inequalities influence knowledge and understanding, concerns, degrees of trust in and feelings about data practices. They play a major role in shaping people’s experiences of them, and therefore their understanding and perceptions of them.
Professor Kennedy believes that we can learn lessons from the research reviewed that will help us in the current coronavirus pandemic, with regard to whether the public will trust the proposed NHSX contact tracing app. ‘People want clear communication about what happens to data, with privacy built in by design and policies to guard against harms, especially to marginalised populations’ she says. ‘They also want the chance to opt out of data gathering, so contact tracing apps should remains optional, to give people a sense of personal control over their data.’
She goes on to say that while we can find out more about what people think about a contact-tracing app by carrying out a survey or conducting a trial, it will take much larger-scale, systemic change to address the issue of trust. ‘To win the confidence they depend on to be effective, apps and systems built to protect us must acknowledge the inequalities that shape our experiences of data gathering and of pandemics,' she says.