Building trust in data and research

Trust is essential for research, especially when it involves personal data. At GOSH, patients and young people are helping researchers understand not just what data can do, but how it should (and shouldn’t) be used, explained and protected.

Discussions with parents and young people reveal that data research can raise important concerns:

• Who can access information?
• Could data be misused?
• Is anonymised data truly secure?

These concerns are valid and addressing them openly is essential to building trust.

In one project, young people worked with researchers to co-create a ‘Guide for Data Linkage’. Through this process, they identified three key principles:

• research must deliver public benefit
• data must be kept safe and secure
• communication must be open and transparent

They also emphasised the importance of explaining clearly:

• how data is stored
• what researchers can and cannot see
• what happens if rules are broken

Parents involved in other projects echoed similar concerns - particularly about linking sensitive data such as health, income and benefits.

Their advice was clear:

• explain data use in simple, clear language
• emphasise that research looks at patterns, not individuals
• reassure people about strong safeguards and protections

These insights are helping researchers:

• improve how they communicate about data
• address concerns more openly and honestly
• build confidence in research processes

There is strong support for using data to improve lives - but only when it is done transparently and responsibly

By working with patients and families, we can ensure that trust is not assumed - it is actively built.

“Knowing exactly what is done with personal data provides assurance and increases trust.”
Liverpool YPAG member

“I think people are more likely to trust something if how it is being stored is explained rather than just saying it will be stored securely.”
GOSH YPAG member

The PPIE team at GOSH is supported by our NIHR GOSH Biomedical Research Centre.