ArticleScience & public policy2016
Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme.
Article in Science & public policy, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 59 papers, 2 of them syntheses that pooled it.
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
59 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- "Giving something back": A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland.Wellcome open research · 2018Pooled it
- Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies.BMC medical ethics · 2016Pooled it
- Improving cardiovascular disease risk communication in NHS Health Checks: a qualitative study.BMJ open · 2019Trial
- 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
- Patient and Public Involvement and Engagement (PPIE) in methodological research: exploring challenges, tensions and learning from the perspectives of PPIE and researchers in the Realist Economic Evaluation Methods (REEM) study.Research involvement and engagement · 2026Article
- Beyond the dataset: integrating public voices in data science.Research involvement and engagement · 2026Article
- Towards responsible surveillance in preventive health data-AI research.PLOS digital health · 2025Article
- 'Hell No!'-Exploring Scepticism in UK Health Research Since COVID-19 Amongst Communities Who Have Been Labelled 'Underserved'.Sociology of health & illness · 2025Article
- If it wasn't for us, there would be no data: stakeholders' perspectives on patient involvement in the use of health data in Ireland.Research involvement and engagement · 2025Article
- I don't mind my information going to the Moon, but I don't want any letters from Mars: a qualitative exploration of the challenges with secondary use of health data in Ireland.Archives of public health = Archives belges de sante publique · 2025Article
- Placing conditions on sharing general practice data for research: Recommendations from two community juries.International journal of population data science · 2025Article
- A novel protocol for a "Citizen Panel" for diverse Public and Participant Involvement in the review and development of the process to access data in the UK Longitudinal Linkage Collaboration Trusted Research Environment.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
- Article
- Community-Partnered Research appraisal tool for conducting, reporting and assessing community-based research.BMJ open · 2024Review
- 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
- Health data social licence: An inclusive process to learn more about the perspectives of experienced public and patient advisors.International journal of population data science · 2024Article
- Participatory evaluation of the process of co-producing resources for the public on data science and artificial intelligence.Research involvement and engagement · 2023Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Public attitudes toward cloud computing and willingness to share personal health records (PHRs) and genome data for health care research in Japan.Human genome variation · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
The Scottish Health Informatics Programme (SHIP) was a Scotland-wide research programme exploring ways of collecting, managing and analysing electronic patient records for health research. As part of the SHIP public engagement work stream, a series of eight focus groups and a stakeholder workshop were conducted to explore perceptions of the role, relevance and functions of trust (or trustworthiness) in relation to research practices. The findings demonstrate that the public's relationships of trust and/or mistrust in science and research are not straightforward. This paper aims to move beyond simple descriptions of whether publics trust researchers, or in whom members of the public place their trust, and to explore more fully the bases of public trust/mistrust in science, what trust implies and equally what it means for research/researchers to be trustworthy. This has important implications for public engagement in interdisciplinary projects.
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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.