ArticleInternational journal of population data science2020
Trust, security and public interest: striking the balance A narrative review of previous literature on public attitudes towards the sharing, linking and use of administrative data for research.
Article in International journal of population data science, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- What makes administrative data "research-ready"? A systematic review and thematic analysis of published literature.International journal of population data science · 2022Pooled it
- Guiding and governing the complexities of digital allergy data integration and analysis: a critical national health priority for Australia.BMJ health & care informatics · 2026Article
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- Identifying local priorities for research with linked routine data: an online workshop method.International journal of population data science · 2026Article
- The nature and extent of the literature on linked reproductive health datasets in the UK: a scoping review.International journal of population data science · 2025Article
- Integrating public engagement to promote transparent data use in a new UK-wide birth cohort.International journal of population data science · 2025Article
- Community views on the secondary use of general practice data: Findings from a mixed-methods study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility.International journal of population data science · 2024Article
- CIDACS' efforts towards an inclusive and dialogic data governance in Brazil: a focused literature review.International journal of population data science · 2024Review
- Data for sale: trust, confidence and sharing health data with commercial companies.Journal of medical ethics · 2023Article
- Exploring how to improve the involvement of Polish and South Asian communities around big data research. A qualitative study using COM-B model.International journal of population data science · 2023Article
- Linking pre- and post-adoption records for research in anonymised form in a data safe haven: legal implications and support for a social licence.International journal of population data science · 2020Article
- A profile of the Grampian Data Safe Haven, a regional Scottish safe haven for health and population data research.International journal of population data science · 2019Article
- Review
Corrections and comments
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Authors and funding
1 author.
Funding
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Abstract
This narrative literature review explores previous findings in relation to the UK public's attitudes towards the sharing, linking and use of public sector administrative data for research. A total of 16 papers are included in the review, for which data was collected between the years 2006-2018. The review finds, on the basis of previous literature on the topic, that the public is broadly supportive of administrative data research if three core conditions are met: public interest, privacy and security, and trust and transparency. None of these conditions is sufficient in isolation; the literature shows public support is underpinned by fulfillment of all three. However, it also shows that in certain cases where the standard of one condition is very high - particularly public interest - this could mean the standard of another may, if necessary, be lower. An appropriate balance must be struck, and the proposed benefits of sharing and using data for research must outweigh the potential risks. Broad, conditional support for the use of administrative data in research has not only been found consistently, but has also been held over time. Most studies identified by this review have focused on exploring the views of the general public towards the acceptability of administrative data use in broad terms. However, with the exception of that related to healthcare data, the review identified little work focused on gaining input from relevant demographics and communities in relation to specific data types or areas of research. In addition to fulfilling the core conditions of public support identified by broader work, initiatives making use of administrative data should aim to seek the views of relevant sub-sectors of the public in the development of research in relation to specific issues.
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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.