Co-developing resources for better public understanding of longitudinal population study data and the law

Area of Science:

• Health Law and Policy
• Data Governance in Research
• Public Health Ethics

Background:

• Longitudinal Population Studies (LPS) involve complex legal frameworks for participant data usage.
• Key legislation includes UK data protection laws (Data Protection Act 2018, UK-GDPR), common law duty of confidentiality, Digital Economy Act (DEA) 2017, and NHS regulations.

Purpose of the Study:

• To develop accessible transparency materials for LPS participants.
• To enhance participant awareness and understanding of relevant laws, legal principles, and individual rights concerning their data.

Main Methods:

• Public contributors from UK Longitudinal Linkage Collaboration (UK LLC), Health Data Research UK (HDR UK), and DATAMIND provided input.
• A series of infographics were developed in multiple formats (written, audio, BSL, translated) in collaboration with the UK LLC Public Advisory Group (PAG).

Main Results:

• Public contributors indicated low awareness of laws governing LPS data, with the DEA (11% awareness) being least known and UK-GDPR (88% awareness) most known.
• Key messages were developed to inform LPS participants about their rights and expectations regarding data use.
• Transparency materials are available online (https://ukllc.ac.uk/lps-data-and-the-law).

Conclusions:

• The developed transparency materials effectively support LPS participants in understanding the legal basis for data use and their rights.
• There is a general lack of awareness regarding the legal landscape of longitudinal data use, necessitating clear and accessible communication from data providers.