ArticleInternational journal of population data science2025
Co-developing resources for better public understanding of longitudinal population study data and the law.
Article in International journal of population data science, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- Improving transparency in data access processes: Developing best practice standards and promoting system-wide change through a competitive funding call.International journal of population data science · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
15 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Introduction: The legal basis for using participants' data in Longitudinal Population Studies (LPS) is complex. Laws of particular relevance are (1) UK data protection legislation, including Data Protection Act 2018 and UK General Data Protection Regulation (UK-GDPR); (2) common law duty of confidentiality; (3) Digital Economy Act (DEA) 2017; (4) Section 251 of the National Health Service Act 2006; and (5) Health Service (Control of Patient Information) Regulations 2002. Objective: To develop transparency materials for LPS participants to raise awareness and understanding of key laws, legal principles and their rights. Methods: Public contributors from UK Longitudinal Linkage Collaboration (UK LLC), Health Data Research UK (HDR UK) and DATAMIND provided input to benchmark current public understanding of laws and legal principles relevant to research. Based on this involvement, we worked with the UK LLC Public Advisory Group (PAG) and external organisations to produce a series of infographics. These were available in written English, audio, British Sign Language (BSL) and additional languages, to reach as wide an audience as possible. Results: Input from 56 public contributors informed the work by suggesting low levels of awareness of the laws and legal principles. The DEA was the least well-known, with 11% of people aware of this legislation and the most well-known was UK-GDPR, with 88% awareness. We developed key messages for LPS participants on what they should be aware of as individuals, including what they should expect from their LPS. The information is available to the public and LPS participants as a series of infographics (https://ukllc.ac.uk/lps-data-and-the-law). Conclusion: Our series of transparency materials support LPS participants to understand the legal basis for study data use, and their rights. General awareness of the laws and legal principles involved in the use of longitudinal data is low and we recommend data providers should raise awareness in clear and accessible ways.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.