ArticleYearbook of medical informatics2016
Building a Privacy, Ethics, and Data Access Framework for Real World Computerised Medical Record System Data: A Delphi Study. Contribution of the Primary Health Care Informatics Working Group.
Article in Yearbook of medical informatics, 2016. 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
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
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Ethical Use of Electronic Health Record Data and Artificial Intelligence: Recommendations of the Primary Care Informatics Working Group of the International Medical Informatics Association.Yearbook of medical informatics · 2020Guideline
- What Do We Mean by Sharing of Patient Data? DaSH: A Data Sharing Hierarchy of Privacy and Ethical Challenges.Applied clinical informatics · 2024Article
- Patient-Generated Health Data (PGHD): Understanding, Requirements, Challenges, and Existing Techniques for Data Security and Privacy.Journal of personalized medicine · 2024Review
- Generalisable Overview of Study Risk for Lead Investigators Needing Guidance (GOSLING): A data governance risk tool.PloS one · 2024Article
- 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
- Quality assessment of real-world data repositories across the data life cycle: A literature review.Journal of the American Medical Informatics Association : JAMIA · 2021Review
- The anatomy of electronic patient record ethics: a framework to guide design, development, implementation, and use.BMC medical ethics · 2021Article
- Reduce Burnout by Eliminating Billing Documentation Rules to Let Clinicians be Clinicians: A Clarion Call to Informaticists.Applied clinical informatics · 2021Article
- Examination and diagnosis of electronic patient records and their associated ethics: a scoping literature review.BMC medical ethics · 2020Article
- Intensification to injectable therapy in type 2 diabetes: mixed methods study (protocol).BMC health services research · 2019Article
- Best practices for preventing malfunctions in rule-based clinical decision support alerts and reminders: Results of a Delphi study.International journal of medical informatics · 2018Article
- Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics.Yearbook of medical informatics · 2018Review
- The role of ethics in data governance of large neuro-ICT projects.Journal of the American Medical Informatics Association : JAMIA · 2018Review
- Research Strategies for Biomedical and Health Informatics. Some Thought-provoking and Critical Proposals to Encourage Scientific Debate on the Nature of Good Research in Medical Informatics.Methods of information in medicine · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPrivacy, ethics, and data access issues pose significant challenges to the timely delivery of health research. Whilst the fundamental drivers to ensure that data access is ethical and satisfies privacy requirements are similar, they are often dealt with in varying ways by different approval processes.
objectiveTo achieve a consensus across an international panel of health care and informatics professionals on an integrated set of privacy and ethics principles that could accelerate health data access in data-driven health research projects.
methodA three-round consensus development process was used. In round one, we developed a baseline framework for privacy, ethics, and data access based on a review of existing literature in the health, informatics, and policy domains. This was further developed using a two-round Delphi consensus building process involving 20 experts who were members of the International Medical Informatics Association (IMIA) and European Federation of Medical Informatics (EFMI) Primary Health Care Informatics Working Groups. To achieve consensus we required an extended Delphi process.
resultsThe first round involved feedback on and development of the baseline framework. This consisted of four components: (1) ethical principles, (2) ethical guidance questions, (3) privacy and data access principles, and (4) privacy and data access guidance questions. Round two developed consensus in key areas of the revised framework, allowing the building of a newly, more detailed and descriptive framework. In the final round panel experts expressed their opinions, either as agreements or disagreements, on the ethics and privacy statements of the framework finding some of the previous round disagreements to be surprising in view of established ethical principles.
conclusionThis study develops a framework for an integrated approach to ethics and privacy. Privacy breech risk should not be considered in isolation but instead balanced by potential ethical benefit.
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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.