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At least 19 recordsLinked to original sources
PubMed2026

Ethical Governance of Open Data Across Biomedical Research, Healthcare, and Public Health: Privacy, Equity, Trust, and Controlled Access.

Open data has become central to biomedical research and public health, but health information is uniquely sensitive and difficult to share responsibly. In this narrative review, open data is considered as a spectrum of health-data sharing arrangements, ranging from public aggregate datasets to controlled-access repositories, federated analysis, and synthetic data. This narrative review synthesizes the scientific and societal rationale for greater openness with the ethical, legal, and governance constraints that shape what "open" can realistically mean in healthcare. We examine how data sharing supports reproducibility, machine learning, and more efficient research, while also enabling public health surveillance and learning health systems. Against these benefits, we analyze privacy and re-identification risks, consent challenges in large-scale secondary use, inequities including data colonialism, and tensions introduced by commercialization. We integrate lessons from prominent case examples spanning pandemic data sharing, genomic initiatives, population registries, patient-led rare disease infrastructures, and regional data spaces. Across these domains, experience suggests that durable progress depends less on unrestricted openness than on calibrated access, privacy-preserving architectures, clear accountability, and sustained public engagement. We conclude by proposing a pragmatic ethical orientation for healthcare open data: treat openness as a spectrum of controlled sharing arrangements, embed equity and reciprocity into governance, and institutionalize trust-building measures that can persist beyond emergencies and political cycles.

Data colonialism↗
PubMed2026

Privacy, security, and reliability risks of artificial intelligence in healthcare: a systematic review of empirical evidence.

BACKGROUND: Artificial intelligence (AI) is increasingly integrated into healthcare information systems, supporting clinical decision-making, imaging analysis, and predictive modeling. While these applications offer operational and clinical benefits, they also introduce emerging risks to patient privacy, data security, and system reliability. OBJECTIVE: To systematically review empirical evidence on privacy breaches, security vulnerabilities, and misuse associated with AI applications in healthcare settings. METHODS: PubMed, Embase, Web of Science, Scopus, IEEE Xplore, and ACM Digital Library were searched for empirical studies published between January 2015 and November 2025 that evaluated AI use or misuse in clinical diagnosis, treatment, or decision-making. Two reviewers independently screened studies and extracted data using a standardized form. Findings were synthesized narratively due to heterogeneity in study designs, AI methods, and reported outcomes. RESULTS: Of 7,285 records identified through database searches and 205 through citation screening, 22 empirical studies met the inclusion criteria, spanning multiple clinical domains and data modalities, predominantly medical imaging applications. Five recurring threat categories were identified: patient re-identification, membership inference, unauthorized access and adversarial exploitation, input manipulation, and misuse or overinterpretation of AI outputs. Across studies, AI models were shown to encode latent biometric signals across diverse data types, limiting the effectiveness of traditional anonymization and synthetic data approaches. Adversarial attacks and input manipulation were also shown to compromise diagnostic performance and system integrity. CONCLUSION: This systematic review provides empirical evidence suggesting that contemporary AI systems in healthcare introduce privacy and security risks that may challenge traditional assumptions about data protection. These findings underscore the need for privacy- and security-by-design approaches and governance frameworks that address risks across the AI lifecycle.

Humans↗
PubMed1979

A comparison of mail, telephone, and home interview strategies for household health surveys.

The method of data collection in household health surveys can be a major determinant of cost and data quality. A survey strategy can comprise mail, telephone, or home interview methods, individually or in combination to follow up non-respondents. The purpose of this study in Montreal was to compare cost and data quality of various strategies. Strategies which began with mail or telephone contact, followed by the two other methods, provided response rates as high as a home interview strategy (all between 80 and 90 per cent), for one-half the cost of home interviews when used as the sole method. The telephone response rate was higher than the mail response rate. Comparing different follow-up approaches to strategies beginning with mail or telephone, it proved less costly, and equally effective, to use home interviewing as a last resort for persistent non-respondents. Validity of response (comparing individual responses with records of a government health insurance data bank) and willingness to answer sensitive questions were greatest in mail strategy.

Canada↗
PubMed1992

One approach to tracking state and local health spending.

National health system reform proposals continue to emphasize states' shared responsibility for their citizens' health care. In view of this increased interest, this Data Watch examines how much state and local governments spend for health care, using primarily data from the U.S. Bureau of the Census. Significant discrepancies exist between these data and other sources of state and local health spending data. Nevertheless, census data are the most comprehensive source of information on state and local spending. In the 1980s the gross rate of state spending on health was exceeded only by spending on corrections; later reports indicate that health has now overtaken corrections. Health and hospital spending varies widely among states, ranging from $1.79 per $100 of personal income in New York (after federal funding and charges are subtracted) to $0.36 per $100 in Nebraska. Continued work is needed to unravel the differences between data sources and to improve the collection and use of data at the state and local levels.

Budgets↗
PubMed2026

The European Health Data Space and the Secondary Use of Sensitive Health Data.

INTRODUCTION: The European Health Data Space (EHDS) is one of the European Union's most ambitious data-governance projects. It aims to create a common framework through which electronic health data can be accessed and reused across Member States for care, research, innovation, policy, and public-interest purposes. Its practical viability depends not only on digital infrastructure, but also on legal, ethical, and organisational harmonisation, particularly for genetic and genomic data. METHODS: This paper examines the EHDS with emphasis on the secondary use of health data. It reviews the EHDS institutional architecture, discusses Finland's Findata as a national model for structured access, and analyses challenges for data holders and data donors, including interoperability, governance burdens, privacy protection, residual re-identification risk, and genomic-data sensitivity. RESULTS: A cross-border cancer-genomics case study shows that the EHDS can streamline data discovery and the routing of access requests, but does not by itself eliminate legal fragmentation, heterogeneous ethics review, and consent-related barriers. DISCUSSION: Effective implementation will require harmonisation beyond infrastructure, including clearer consent standards, more consistent ethics procedures, interoperable metadata, and proportionate safeguards for genomic data.

Electronic Health Records↗
PubMed1990

Trends in the distribution of South African health care expenditure.

The lack of critical distinction between the public and the private health sectors and what they represent has allowed the claim to be made that South African health care expenditure levels compare favourably with international standards. This paper considers the distribution of health expenditure between the public and the private sectors in South Africa, within these sectors and also on the basis of population group. The extent of maldistribution of health care resources among the people of South Africa is highlighted. The data analysed in this paper indicate that an increasing proportion of public sector expenditure has been spent on curative services, that the gap in real per capita expenditure between the 'homelands' and other public sector departments has been widening, and that per capita expenditure has been increasing more rapidly in the private sector than in the public sector, particularly in the 1980s.

Catchment Area, Health↗
PubMed1991

A survey of nurses views on the latest health service 'reforms'.

A small survey was carried out to measure nurses views on the latest changes planned by the Government for the health service. Data were collected by questionnaire from a small convenience sample of nurses from throughout New Zealand. The majority of respondents indicated that they oppose the changes overall. All key aspects of the latest reforms are opposed by a clear majority. However, the survey had a number of limitations; in particular a very low return rate.

Attitude of Health Personnel↗
PubMed1990

Leadership gap wreaks havoc with health policy.

The Bush Administration's failure to fill key health care positions has hurt formation of Medicare policy, and Congress made a mistake by backpedaling on catastrophic health insurance, according to an exclusive survey of hospital CEOs.

Data Collection↗
PubMed1990

Measurement of health status in the 1990s.

The use of health-related quality of life measures, especially those based on function, are likely to increase during the next decade. This increase, however, is most likely to occur in clinical research and clinical practice. Unless the necessary political will, resources, data, and policy researchers coexist, there will be relatively little advance in the use of health status measures for decision-making and policy. This prediction is based on the observation that policy research tends to rely on available national data, that currently these data provide limited information about health status, and that there appears to be insufficient interest and resources to broaden data collection or to develop methods that incorporate a broad spectrum of health outcomes (e.g. death, impairment, functional status, and perceptions) into a single instrument or measure of health on large populations and communities. This state of affairs is particularly unfortunate as we face a decade in which available health and medical care may become more limited and social inequity in access and health status may become more marked. The effect of social inequities and restrictions to health care on the health of the nation cannot continue to be determined with reference only to the structure and process of the health care system. Health and quality of life outcomes are what count. And, these outcomes cannot be determined without appropriate and inclusive measures of health-related quality of life. Of course, we hope our prediction is wrong and that the motivation and resources will be found to help resolve methodologic issues in the measurement of population health status and quality of life and to provide the necessary data. We hope that government agencies, employers, and private providers will begin to collect health-related quality of life data on the constituents and populations they serve. Even if these data are imperfect or primitive, the effects of improving accessibility and quality of health care can only be assessed adequately in terms of the health-related quality of life of the nation.

Community Health Services↗
PubMed1989

Public and private immunisation services: a comparison of costs.

Cost inputs to infant immunisation programs were identified for both the public and private health systems, based on data from the fourteen local government areas which made up the Western Metropolitan Health Region in Sydney, New South Wales. The public health approach is shown to be significantly less costly than private immunisation services. The costs of the latter, however, are largely hidden within the national health bill, while the costs of the former are spread across all three levels of government. Total public sector costs of immunisation could be decreased, but only with increased input at the local government level. Thus, under present distribution and funding arrangements in NSW, covert fostering of the less cost efficient private immunisation services is likely to continue.

Child↗
PubMed1990

CEOs: funding key to ending public health crisis.

Declines in government spending on health care have hit low-income Americans especially hard. Increased spending would have a positive effect on the nation's health, say hospital executives. In fact, funding primary care for the medically indigent may save money in the long run.

Attitude of Health Personnel↗
PubMed1990

On the supply of physicians.

The congressionally created Council of Graduate Medical Education is conducting a study to assess the adequacy of the current and future supply of physicians in six specialties. The study is revising and updating the needs-based method used by the Graduate Medical Education National Advisory Committee and using this method to project the requirements for physicians for the next two decades. Projections on the supply of physicians will be based on the latest data from the federal government's Bureau of Health Profession's health manpower model. Previous physician manpower studies are reviewed to provide a historic perspective and a frame of reference for the variables, data sources, and assumptions being considered by the Council of Graduate Medical Education study.

Forecasting↗
PubMed1976

Demographic differences in support for government measures to control health care costs.

This paper uses longitudinal data from representative samples of national and southern California populations in an analysis of public opinion regarding proposals for health care cost controls. After examining ethnicity in conjunction with sex, socioeconomic status, age and party identification, it appears that this variable has significant explanatory power. This suggests that community may be a more useful concept than class in assessing public support for various forms of national health insurance and regulatory policies.

Black or African American↗
PubMed1977

The future of Blue Cross.

This paper analyzes the reasons for the rise and decline of Blue Cross, a unique American institution. Its inability to respond to the crisis in today's health system is described as nothing more than the failure of the ailing American health system to cure itself. The early rise of Blue Cross is attributed to its success in addressing pressing social needs: helping patients afford the costs of hospitalization and helping hospitals meet expenses. Its later decline is traced to several factors: the striking increase in the costs of health care; the rise of the state insurance commissioner; the anticipated passage of national health insurance; and the increased competition from commerical insurance carriers, specialty health care data and management firms and state governments. In concluding, the question is raised whether society should invest further in the future Blue Cross, a social institution which may have irrevocably lost the confidence of the general public, government and the health provider community. Four possible futures for Blue Cross are set forth: the outright collapse of several plans, a "Lockheed-type" bailout, a "Naderist" organization strongly allied with consumers, and a quasi-governmental agency.

Blue Cross Blue Shield Insurance Plans↗
PubMedDate not supplied

Health and environmental impact assessment in Canada.

Potential health effects of proposed development activities are an important component of environmental impact assessment (EIA). I report results of a survey to determine the nature and extent of health impact assessments in EIA in Canada. Most proponents conduct health impact assessments when there is an identified health concern. However, few Canadian jurisdictions require health impact assessments in their EIA legislation. The extent to which health is considered depends on several factors and concerns can be addressed at several different stages of the EIA process. Health impact assessments have dealt with a wide range of concerns, although the specific health issues addressed depend on the nature of the project. Several procedures and methods have been used by proponents and government reviewers. Often health impact assessments are qualitative or rely on relevant standards or guidelines. Occasionally, quantitative risk assessments are conducted. Survey respondents identified several problems which hinder health impact assessments including a shortage of suitably trained and experienced health professionals, inadequate communications between government agencies and insufficient or conflicting scientific data to allow accurate prediction of any health effects.

Canada↗