ArticleLearning health systems2019
Our data, our society, our health: A vision for inclusive and transparent health data science in the United Kingdom and beyond.
Article in Learning health systems, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 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
31 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies.BMC medical informatics and decision making · 2020Pooled 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
- Attitudes towards data access and sharing health data for research: a case study of Australian data custodian perspectives.Health information management : journal of the Health Information Management Association of Australia · 2026Article
- Artificial Intelligence and Data Science Methods for Automatic Detection of White Blood Cells in Images.Journal of imaging informatics in medicine · 2026Review
- Beyond the dataset: integrating public voices in data science.Research involvement and engagement · 2026Article
- Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform.International journal of population data science · 2025Article
- 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
- Akrivia Health Database-deep patient characterisation using a secondary mental healthcare dataset in England and Wales: cohort profile.BMJ open · 2024Article
- Creating a learning health system to include environmental determinants of health: The GroundsWell experience.Learning health systems · 2024Article
- Public Involvement and Engagement in Big Data Research: Scoping Review.Journal of participatory medicine · 2024Article
- 'To me, it's ones and zeros, but in reality that one is death': A qualitative study exploring researchers' experience of involving and engaging seldom-heard communities in big data research.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- A topic-based hierarchical publish/subscribe messaging middleware for COVID-19 detection in X-ray image and its metadata.Soft computing · 2023Article
- Challenges and opportunities for using population health data to investigate cancer survivors' quality of life in Australia.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Article
- Evaluation of routinely collected records for dementia outcomes in UK: a prospective cohort study.BMJ open · 2022Article
- Impact of the national home safety equipment scheme 'Safe At Home' on hospital admissions for unintentional injury in children under 5: a controlled interrupted time series analysis.Journal of epidemiology and community health · 2022Article
- Article
- The social licence for data-intensive health research: towards co-creation, public value and trust.BMC medical ethics · 2021Review
- Accessing routinely collected health data to improve clinical trials: recent experience of access.Trials · 2021Article
- A Social Media Campaign (#datasaveslives) to Promote the Benefits of Using Health Data for Research Purposes: Mixed Methods Analysis.Journal of medical Internet research · 2021Article
- Fostering Engagement With Health and Housing Innovation: Development of Participant Personas in a Social Housing Cohort.JMIR public health and surveillance · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors.
Funding
Abstract
The last 6 years have seen sustained investment in health data science in the United Kingdom and beyond, which should result in a data science community that is inclusive of all stakeholders, working together to use data to benefit society through the improvement of public health and well-being. However, opportunities made possible through the innovative use of data are still not being fully realised, resulting in research inefficiencies and avoidable health harms. In this paper, we identify the most important barriers to achieving higher productivity in health data science. We then draw on previous research, domain expertise, and theory to outline how to go about overcoming these barriers, applying our core values of inclusivity and transparency. We believe a step change can be achieved through meaningful stakeholder involvement at every stage of research planning, design, and execution and team-based data science, as well as harnessing novel and secure data technologies. Applying these values to health data science will safeguard a social licence for health data research and ensure transparent and secure data usage for public benefit.
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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.