ReviewNPJ digital medicine2021
Privacy protections to encourage use of health-relevant digital data in a learning health system.
Review in NPJ digital medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 87 papers, 3 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
87 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Impact of online patient access to clinical notes on quality of care: a systematic review.BMJ quality & safety · 2026Pooled it
- Adoption of Internet of Things in Health Care: Weighted and Meta-Analytical Review of Theoretical Frameworks and Predictors.Journal of medical Internet research · 2026Pooled it
- Recent Academic Research on Clinically Relevant Digital Measures: Systematic Review.Journal of medical Internet research · 2021Pooled it
- Consumer Willingness to Share Personal Digital Information for Health-Related Uses.JAMA network open · 2022Trial
- Ethical Governance of Open Data Across Biomedical Research, Healthcare, and Public Health: Privacy, Equity, Trust, and Controlled Access.Health care analysis : HCA : journal of health philosophy and policy · 2026Article
- Advancing data protections for implantable brain-computer interfaces.Communications medicine · 2026Review
- Managing the silent burden: a grounded theory study on urinary incontinence in older women.BMC geriatrics · 2026Article
- Ethical Considerations in Patient Privacy and Data Handling for AI in Cardiovascular Imaging and Radiology.Journal of imaging informatics in medicine · 2026Review
- Large language models for post-discharge follow-up in erectile dysfunction care: a narrative review.Translational andrology and urology · 2026Review
- Ethical Priorities Among Commercial Genomics Professionals : Survey Evidence Highlighting Diversity, Fragmented Privacy Law, and Human Rights Risks as Central Participant Concerns.Journal of bioethical inquiry · 2026Article
- Available guidance for ethical challenges in learning health systems: an integrative literature review.Health research policy and systems · 2026Review
- Anonymization and visualization of health data and biomarkers.NPJ digital medicine · 2026Article
- Chronic Diseases, Self-Rated Health, and Planned Retirement Age: The Moderating Role of Race and Ethnicity.Research on aging · 2026Article
- BRIDGE pilot study: a bilateral regulatory investigation of data governance and exchange.NPJ digital medicine · 2026Article
- Personalizing health call center services: results from an online survey on user experiences in Kuwait.F1000Research · 2026Article
- "Frontiers in digital health · 2026Article
- Privacy policies for FDA-authorized or FDA-recognized digital therapeutics impose high digital health literacy demands: a cross-sectional analysis.Frontiers in public health · 2026Article
- Toward a National Health Digital and Data Architecture: Laying the Foundation for Digital Transformation: Commission on Investment Imperatives for a Healthy Nation.NAM perspectives · 2026Review
- Ethical considerations for multimodal artificial intelligence in healthcare.AI and ethics · 2026Article
- Legal questions of AI-generated immunological products for infectious diseases.Human vaccines & immunotherapeutics · 2025Review
27 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
The National Academy of Medicine has long advocated for a "learning healthcare system" that produces constantly updated reference data during the care process. Moving toward a rapid learning system to solve intractable problems in health demands a balance between protecting patients and making data available to improve health and health care. Public concerns in the U.S. about privacy and the potential for unethical or harmful uses of this data, if not proactively addressed, could upset this balance. New federal laws prioritize sharing health data, including with patient digital tools. U.S. health privacy laws do not cover data collected by many consumer digital technologies and have not been updated to address concerns about the entry of large technology companies into health care. Further, there is increasing recognition that many classes of data not traditionally considered to be healthcare-related, for example consumer credit histories, are indeed predictive of health status and outcomes. We propose a multi-pronged approach to protecting health-relevant data while promoting and supporting beneficial uses and disclosures to improve health and health care for individuals and populations. Such protections should apply to entities collecting health-relevant data regardless of whether they are covered by federal health privacy laws. We focus largely on privacy but also address protections against harms as a critical component of a comprehensive approach to governing health-relevant data. U.S. policymakers and regulators should consider these recommendations in crafting privacy bills and rules. However, our recommendations also can inform best practices even in the absence of new federal requirements.
Identifiers
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.