IJPDS International Journal of Population Data Science

A new study, published in the International Journal of Population Data Science (IJPDS), recommends that data providers increase endeavours to raise awareness among people whose data is being used for research in the public good as a means to drive the trustworthiness of the research process. It details the UK Longitudinal Linkage Collaboration’s (UK LLC) approach to simplifying the laws and legal principles involved in the use of data for research for longitudinal study participants, which are generalisable both to other research sectors and internationally (with local adaptations).

Longitudinal study participants volunteer information about their lives over time with the expectation that the information (data) collected by their study will be used for research to improve and save lives. How these data are used varies across studies and depends on factors such as the aims and purpose of the study, what participants agreed to when they joined, and the laws and legal principles involved in the use of data for research. Yet, for even the most engaged study participants, it is unlikely that many are aware of the legislation in great detail, as it can be complex, confusing and often inaccessible to the average person.

A desire to drive trustworthiness in the research process

The ability of UK LLC, as the national Trusted Research Environment for data linkage in longitudinal research, to provide study data linked with other data types for research in the public good depends on strong relationships established between partner studies and their study participants. Therefore, they sought to identify and address this suspected knowledge gap around the laws and legal principles involved in the use of data for research.

With the support of their Public Advisory Group, the team have developed:

• A survey, completed by 56 public contributors, to establish knowledge and awareness levels to guide the production of materials
• A set of infographics on the Digital Economy Act 2017, UK Data Protection Laws, Common Law Duty of Confidentiality, Control of Patient Information Regulations 2002/Section 251 of the NHS Act 2006, plus a general summary infographic, including translated versions of each infographic
• British Sign Language videos and audio versions of the infographics (English).

They recommend developing additional resources to demystify and explain other laws involved with research, including the Mental Capacity Act, Human Rights Act and the Human Tissue Act, which would also be very beneficial.

Demonstrating trustworthiness is not a ‘one and done’ pursuit. Organisations may wish to consider how to improve transparency of their processes on an ongoing basis, involving the public as to how best to develop and communicate information.

Sarah, one of the members of the UK LLC Public Advisory Group said, “I enjoyed the challenge of working with the team on the Transparency Standards infographics. The topic and associated legislation on consent to the use of Longitudinal Population Study data initially seemed very complex and daunting. However, by working together and using our combined comments and insights, I feel we contributed to the production of helpful resources on this important topic.”

 

Click here to read the full article

Kirsteen Campbell, Public Involvement and Communications Manager, UK Longitudinal Linkage Collaboration (UK LLC)

Campbell, K., Chave, S., Hill, R., Docherty, M., Gregg, M., Turner, E., Evans, K., Oakley, J., McLachlan, S., Bailey, A., Smith, C., Whitehorn, R., Garbovan, L., Flaig, R. and Boyd, A. (2025) “Co-developing resources for better public understanding of Longitudinal Population Study Data and the Law”, International Journal of Population Data Science, 10(2). doi: 10.23889/ijpds.v10i2.2966.

This study was supported with grant funding from the UK Health Data Research Alliance in support of the Alliance Transparency Standards. The standards were developed by the Pan-UK Data Governance Steering Group and Health Data Research UK’s Public Advisory Board to guide best practice for transparency of data access processes.