ArticleBMC medical informatics and decision making2019
Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research.
Article in BMC medical informatics and decision making, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 2 of them syntheses that pooled it.
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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.
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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
29 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis.Health research policy and systems · 2023Pooled it
- The ethical and legal landscape of brain data governance.PloS one · 2022Pooled it
- Defining Patient and Public Involvement and Engagement Tasks in Health Data Research: A Consensus Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Navigating care together: developing a collaborative checklist to improve care for children with intellectual disabilities.Research involvement and engagement · 2025Article
- Open science must include effective results dissemination to study participants.PLoS medicine · 2025Article
- Ethical disclosure of biomarkers for Alzheimer risk in Latin American participants.Frontiers in dementia · 2025Article
- American Medical Extended Reality Association Expert Consensus: Best Practices for Patient and Public Involvement in Medical Extended Reality Research.Journal of medical extended reality · 2025Article
- New horizons in prediction modelling using machine learning in older people's healthcare research.Age and ageing · 2024Article
- Clinical Research Informatics: a Decade-in-Review.Yearbook of medical informatics · 2024Review
- Patient-Centric Approaches: Revolutionizing Rare Disease Drug Research.Infectious disorders drug targets · 2024Article
- Patient and public involvement in research: a review of practical resources for young investigators.BMC rheumatology · 2023Review
- Attitudes of Patients With Chronic Heart Failure Toward Digital Device Data for Self-documentation and Research in Germany: Cross-sectional Survey Study.JMIR cardio · 2022Article
- The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Public governance of medical artificial intelligence research in the UK: an integrated multi-scale model.Research involvement and engagement · 2022Review
- Participatory codesign of patient involvement in a Learning Health System: How can data-driven care be patient-driven care?Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.Frontiers in public health · 2022Article
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- My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.Journal of medical systems · 2021Article
- Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.BMC medical ethics · 2021Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundData-intensive research in medicine and healthcare such as health-related big data research (HBDR) implies that data from clinical routine, research and patient-reported data, but also non-medical social or demographic data, are aggregated and linked in order to optimize biomedical research. In this context, notions of patient participation and involvement are frequently invoked to legitimize this kind of research and improve its governance. The aim of this debate paper is to critically examine the specific use and ethical role of participatory concepts in the context of HBDR and data-intensive research in medicine and healthcare. DISCUSSION: We introduce basic conceptual distinctions for the understanding of participation by looking at relevant fields of application in politics, bioethics and medical research. Against this backdrop, we identify three paradigmatic participatory roles that patients/subjects are assigned within the field of HBDR: participants as providers of biomaterials and data, participants as administrators of their own research participation and participants as (co-)principal investigators. We further illustrate these roles by exemplary data-intensive research-initiatives. Our analysis of these initiatives and their respective participatory promises reveals specific ethical and practical shortcomings and challenges. Central problems affecting, amongst others, ethical and methodological research standards, as well as public trust in research, result from the negligence of essential political-ethical dimensions of genuine participation.
conclusionsBased on the conceptual distinctions introduced, we formulate basic criteria for justified appeals to participatory approaches in HBDR and data-intensive research in medicine and healthcare in order to overcome these shortcomings. As we suggest, this is not only a matter of conceptual clarity, but a crucial requirement for maintaining ethical standards and trust in HBDR and related medical research.
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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.