IJPDS International Journal of Population Data Science

A new study published in the International Journal of Population Data Science (IJPDS) has explored how people who use drugs feel about their personal data being used for research, revealing strong support for public benefit research alongside concerns about trust, transparency, and data collection.

Researchers often use routinely collected data, such as health, education and social care records, to answer important questions about populations and public services. These data are particularly powerful because they can follow people over time and include groups who are often underrepresented in traditional research studies.

Previous research has shown that the public is generally supportive of data being used for research, particularly when it is handled securely and delivers public benefit. Similar findings have been reported among people with mental health difficulties and care-experienced young people. However, little was known about the views of despite this group often experiencing higher levels of mistrust towards the public services that collect their data.

To address this gap, researchers worked with people attending a drug recovery organisation in Scotland. Small group discussions were supported with creative activities and simple explanations to ensure everyone could participate, regardless of their background or prior knowledge. An illustrator who captured conversations in real time, an approach that participants said helped them feel heard and valued.

Most participants said they were unaware that their data might be used for research and wanted clearer, easier to understand information about how this happens. Many felt they should have more say in how their information is used. Despite their concerns, people were generally supportive of data being used for research when it is clearly in the public interest and handled responsibly.

However, concerns were raised about whether records always reflect people’s experiences. Participants worried that data could contain misunderstandings, assumptions or incomplete information leading to unfair or inaccurate representations. Underpinning many of these concerns was a broader lack of trust in the services that collect data. Some participants felt that mistrust could make people less willing to share information openly potentially affecting the quality of the data available for research.

Dr Camila Biazus Dalcin, Lecturer at the University of Dundee and co-lead of the study, said: “It was powerful to use creative methods to engage with people. Researchers need to ensure that people have a space where they can speak and feel comfortable sharing their opinions about their data. Our participants were clear that data are people”.

Dr Louise Marryat, Senior Research Fellow at the University of Glasgow and co-lead of the study added: “We heard loud and clear that people are open to their data being used for good, but they don’t want to feel left in the dark. Building trust through clear communication is key if we want research to work for everyone.”

The findings suggest that people who use drugs are not against their data being used in research. Instead, they want transparency, stronger trust, and meaningful opportunities to be involved in decisions about how their information is used. The authors argue that improving communication and public involvement will not only make research fairer but could also improve the quality and impact of the data on which it depends.

Participants also helped create a short, animated film about the project, offering further insight into their experiences and views on the use of personal data in research. Click here to view.

 

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Dr Camila Biazus Dalcin, Lecturer and co-lead of the study, University of Dundee and Dr Louise Marryat, Senior Research Fellow and co-Lead for the study, University of Glasgow