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PubMed1994

Cohorts and privacy.

The extent to which major cohort studies now rely on centralized machine-readable files of personal records is taken largely for granted by investigators, but not by the public, privacy advocates, politicians, or the popular press. When widespread linkage into personal histories for statistical studies was first envisaged a few decades ago, it was regarded as impractical. But privacy advocates now fear the statistical uses even more than the administrative applications, perhaps because the latter are inevitable to prevent abuses, and often are associated with monetary benefits or personal convenience. Indeed a concept of 'privacy' has arisen that is deemed to be violated even in statistical studies where confidentiality is assured, unless the particular purpose is approved by all individuals. This concept motivates much of the political thinking. What could be lost to preventive medicine and clinical testing by this is illustrated with data from cohort studies reported in this journal (CCC) in 1993.

Canada↗

PubMed2006

Protecting the privacy of third-party information: recommendations for social and behavioral health researchers.

In psychosocial and health-behavioral research, we often request that research participants provide information on significant individuals in their lives, so-called "third parties". Recently there has been a greater recognition of privacy issues and risks in research pertaining to third parties. Reaction on the part of USA federal regulatory authorities to one study [Amber, D. (2000). Case at vcu bring ethics to forefront. , 14, 1], which attempted to collect survey data about the psychiatric history of respondents' parents, has generated such concern and caution that longstanding practices for the collection of social determinants of health data are being questioned and are at risk of being disallowed by Institutional Review Boards (IRBs). In this paper, we consider third party research rights and risks from the perspective of social and behavioral scientists. Focusing on research about health and quality of life, we first discuss the rationale for research methods that elicit contextual information about family members, friends, co-workers, and other social contacts. Second, we discuss the matter of 'privacy' and its central role in the current third party rights and risks dialogue. Next, we describe ways to effectively manage third-party information, building upon current recommendations by the Office for Human Research Protections (OHRP) and Botkin's [(2001). Protecting the privacy of family members in survey and pedigree research. Journal of the American Medical Association, 285(2), 207-211] treatment of the matter for survey and pedigree research. Lastly, we discuss the implications of applying these data collection and management strategies in social and behavioral research. We assert that these recommendations protect the rights of, and minimize the risks to, third parties without impeding social and behavioral health research.

Behavioral Medicine↗

PubMed2003

Requiring consent vs. waiving consent for medical records research: a Minnesota law vs. the U.S. (HIPAA) privacy rule.

The use of medical records in research can yield information that is difficult to obtain by other means. When such records are released to investigators in identifiable form, however, substantial privacy and confidentiality risks may be created. These risks become more common and more serious as medical records move to an electronic format. In 1996, the state of Minnesota enacted legislation with respect to consent requirements for the use of medical records in research. This legislation has been widely criticized because--it is claimed--it creates an unnecessary impediment to research. In this article, we show that these arguments rest upon misinterpretation and/or misrepresentation of the 1996 legislation. A consent requirement had actually been present in Minnesota since 1976 (though codified in a patient rights statute rather than a privacy statute). The 1996 law does not require specific consent, as often claimed, but rather only a general authorization. The campaign against the Minnesota legislation appears to have been motivated by concern with respect to the then impending federal privacy rule. The HIPAA rule, as enacted, is in fact less stringent with respect to consent than the Minnesota consent law. On the other hand, the Minnesota consent law has not been effectively applied or enforced. As we change the way we manage sensitive medical information, new efforts are needed to provide protection against the confidentiality risks in research. Patient consent is an important tool in this regard. New instrumentalities are needed to solicit and document consent.

Biomedical Research↗

PubMed2026

Privacy-Preserving Linkage of Distributed Biological, Clinical, and Imaging Data Supporting Artificial Intelligence in Pediatric Oncology.

BACKGROUND: Cancer remains the leading cause of disease-related mortality in children over the age of one in Europe, with over 35,000 new pediatric cases and more than 6,000 deaths annually. Due to the rarity of pediatric cancers, clinical trial protocols often substitute for formal treatment guidelines, resulting in many children being enrolled in multiple trials, with biological samples and genomic data stored in various biobanks. Data collection in pediatric oncology is challenging, with sparse data acquired over extended periods, underscoring the need for optimal utilization of all available information through linked, privacy-preserving datasets. METHODS: Here, we report the development of a distributed, privacy-preserving data infrastructure for the PRIMAGE project, a European initiative aimed at supporting artificial intelligence (AI)-driven image analysis for pediatric cancer prognostics. The infrastructure leverages the European Patient Identity (EUPID) Services for Privacy-Preserving Record Linkage, enabling pseudonymized data integration across clinical, biological, and imaging sources. The system incorporates EUPID's hashing and phonetic matching protocols to pseudonymize patient identifiers and link distributed datasets, facilitating secondary data use in compliance with the General Data Protection Regulation. RESULTS: Data from over 700 neuroblastoma patients from European trials and hospitals were linked and uploaded to the PRIMAGE platform, where AI models predict clinical outcomes. CONCLUSION: This infrastructure successfully facilitated AI model development, advancing pediatric oncology research, and offering a scalable framework for future European health data initiatives, such as the European Health Data Space.

Journal Article↗

PubMed1995

Health information privacy reform.

Statutory protection for personal health information privacy is in clear need of reform. With few exceptions, current legal safeguards provide uneven coverage and limited protection. Absence of a uniform federal code of fair health information practices leaves individual rights in health information compromised, exposes data users, and poses a potential threat to the integrity of the data. Current legislative proposals for national health care reform seek to standardize privacy protection while simultaneously facilitating usage of personal health information in an electronic data network. Reform provisions for confidentiality of health data will establish explicit duties for "health information trustees" and should strengthen privacy safeguards in the workplace.

Computer Security↗

PubMed2005

Health services research in the privacy age.

BACKGROUND: Strengthened regulations concerning privacy of health information are affecting large-scale health outcomes research. OBJECTIVE: To create a data collection system that would facilitate outcomes research, avoid selection bias, and fulfill obligations to protect privacy. DESIGN: We created a web-based system that uses touch-screen computer technology for longitudinal collection of data. The system provides access to information in deidentified form, enables it to be linked to health services and outcomes data, and allows patients to join a research registry project (RRP) and be placed on a prospective subject list (PSL). PARTICIPANTS, MEASUREMENTS, AND RESULTS: Pilot testing in 86 consecutive patients who were seen at a large, urban, university-based general medicine practice and had a mean age of 50 years showed that 81 patients had no difficulty, 5 had some difficulty, and none had considerable difficulty using the computer technology to complete a health survey. No patients refused to complete the survey and all patients completed the entire survey. Forty-seven (55%) joined the RRP and 42 of these 47 (89%) joined the PSL. RRP participants were less likely than RRP nonparticipants to be divorced or widowed (P=.03) and less likely to have hypertension (P=.03) but had no other significant differences in sociodemographic or clinical characteristics. PSL participants did not differ from PSL nonparticipants. CONCLUSIONS: The new system ensures privacy and appears to facilitate research recruitment and avoid selection bias.

Adult↗

PubMed1994

Privacy, confidentiality and HIV/AIDS health care.

Privacy and confidentiality are critical issues for people with HIV (human immunodeficiency virus) infection or AIDS (acquired immune deficiency syndrome). This paper reports on a series of 80 detailed interviews conducted in five cities in Australia and New Zealand, within a variety of organisations specialising in the provision of HIV testing and HIV/AIDS treatment services. The aim of the interviews was to survey current practices and procedures relating to the handling of HIV-related health information, and to sample on an informal basis the attitudes of health professionals and HIV-positive persons to specific privacy issues arising with respect to HIV/AIDS health care. The interviews revealed numerous practical issues, innovative procedures, and problems that are of direct relevance to the provision of HIV/AIDS health care services, and to medical practice generally. Despite the genuine commitment to privacy evidenced by most interviewees, the range of examples of careless and blatant breaches of confidentiality indicated by interviewees underscores the need for a concerted effort by those handling HIV information to adhere to legal and professional standards.

Attitude of Health Personnel↗

PubMed1995

Record linkage in Australian epidemiological research: health benefits, privacy safeguards and future potential.

Epidemiologists are increasingly concerned with the health effects of interventions and of exposure to noninfectious agents, but there may be long periods between exposure and outcome. Collecting information from respondents is a costly and often inefficient way of obtaining the longitudinal data necessary to study these effects. Linking existing data can be an effective and efficient alternative. However, it is often not practicable to obtain informed consent from the individuals whose records are to be linked. This raises important issues relating to protection of privacy. This paper examines the health benefits and privacy issues of epidemiological and health services research involving record linkage in Australia. The future potential for studies based on record linkage is discussed in the context of recent national and international developments in data protection. In the interests of public health and the rational use of health resources a balance must be struck between protecting individual privacy and conducting such health research for the common good.

Australia↗

PubMed1984

Role demands, privacy and psychological well-being.

Data from a 1973-74 survey and a five year follow-up survey in 1979, both conducted in New Zealand, are analyzed with regard to gender differences in role obligations, privacy and psychological well-being. The findings support the hypothesis that women are the primary providers of nurturance to family members. Women, more than men reported reductions in privacy because of their role obligations. Reduced privacy in turn caused a reduction in psychological well-being.

Crowding↗

PubMed2001

HIPAA hoopla: privacy and security of identifiable health information.

The privacy and security provisions of the Health Insurance Portability and Accountability Act (HIPAA) are changing the standards for how identifiable health information is handled. This article explains HIPAA and how it interacts with the Family Educational Right to Privacy Act. The advent of HIPAA and the attention given to privacy and security of identifiable health information provides the opportunity for school nurses, school districts, and administrators to revisit and update how they handle student health information. Resources to assist in establishing policies, procedures, and practices that protect student and family health information are identified.

Confidentiality↗

PubMed2004

Privacy questions from practicing school nurses.

This Question and Answer (Q&A) article addresses practice issues related to school health records and school nursing documentation that were posed by school nurses in the field. Specifically, the questions addressed concern the following: education records, medication privacy issues, sharing of sensitive health information, privacy of individual student logs, use of record access logs, and the use of spreadsheets and home computers for creating student records. The Health Insurance Portability and Accountability Act (HIPAA), the Family Educational Records and Privacy Act (FERPA), and other laws are addressed as appropriate.

Confidentiality↗

PubMed2003

Privacy and the secondary use of data for health research: experience in Canada and suggested directions forward.

This paper has three parts. The first part describes developments in the use of personal information for health research in Canada, challenges in responding to new data protection legislation and the work of the Canadian Institutes of Health Research in assisting the research community to adapt to these developments. The second part critiques two aspects of the stakeholder analysis posited in William Lowrance's report: the lack of an analysis of researchers' interests as distinct from those of society at large, and the framing of privacy as an individual interest. I argue for recasting the privacy and research tension as a values conflict between two societal goods and not an individual versus a societal interest, and for explicitly acknowledging researchers' interests as data users. In so doing, there is no clear trump of privacy or research, and greater importance is placed upon the weighing of benefits and risks of individual studies to determine whether the waiving of consent for a particular study or programme of research is justified. The third part makes specific suggestions as to future ways in which data use practices may evolve. I argue the need to engage the public in deliberating the broad parameters under which personal information will be used, as the public collectively has a major stake in this issue and their input provides legitimacy for these uses of information. In addition, given the proliferation of prospectively-developed databases for research purposes, a 'systems' approach for obtaining consent for participation to replace the current study-by-study recruitment of individuals is appropriate.

Academies and Institutes↗

PubMedDate not supplied

Implementing HIPAA privacy regulations in pharmacy practice.

A worthy goal of HIPAA is to protect the privacy of patient health information. Final regulations for achieving this goal have been issued, and all covered entities, including all pharmacies that transmit health information electronically, must comply with these regulations by April 14, 2003. Pharmacists are strongly advised to begin educating themselves about the HIPAA privacy regulations and taking steps toward implementation as soon as possible. Because of the complexity of the privacy rule and the lingering ambiguities about how to implement the regulations, pharmacies also are encouraged to obtain expert guidance and stay up-to-date with the regulations and implementation recommendations posted by OCR.

Confidentiality↗

PubMedDate not supplied

Health information, the HIPAA privacy rule, and health care: what do physicians think?

This study examines physicians' attitudes toward key Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule requirements and assesses the effects of their implementation. We found that despite physicians' generally negative views toward the Privacy Rule, they rated organizations implementing more rule requirements better at protecting the privacy of patient records than organizations that have not implemented the requirements. The policy implications of the findings are discussed.

Adult↗

PubMed1991

Balancing the scales of public interest: medical research and privacy.

Guidelines for the protection of privacy in the conduct of medical research have been issued by the National Health and Medical Research Council, approved by the Commonwealth Privacy Commissioner, and gazetted on 1 July 1991 (Commonwealth of Australia Gazette No. P19) to remain in force until 30 June 1994. This paper examines the guidelines and seeks to inform researchers, institutional ethics committees and the institutions those committees represent of their content. Responsibilities are placed upon those engaged in the conduct of research and those involved in undertaking ethical review who now have to decide that the public interest in conducting the research substantially outweighs the public interest in privacy. There is also an emphasis on the requirement for surveillance of research projects by institutional ethics committees which has not previously been apparent. Questions are posed to assist in deciding whether a particular research protocol is subject to the guidelines.

Australia↗

PubMed2005

Protecting health information privacy in research: how much law do Australians need?

Privacy regulation in Australia, whether by federal or state legislation or other means, has provoked complaints from researchers. Its scope depends on defining the information it covers, the organisations it governs and the principles it applies. Regulation is inconsistent, and compliance can be complex (as illustrated by a hypothetical research example). National reform to achieve a realistic, balanced, publicly acceptable and consistent regulation is urgently needed, and has been recognised and recommended by recent reviews of the Commonwealth Privacy Act 1988 (Cwlth) by the Office of the Federal Privacy Commissioner and the Australian Senate.

Australia↗

PubMedDate not supplied

Resolving ethical dilemmas about privacy and confidentiality. Guidelines for decision making.

Ethical dilemmas are, by the very fact of being dilemmas, situations in which the right action is not immediately evident. A significant number of the ethical dilemmas faced by health-care and other professionals include respect for privacy or confidentiality as one of the values involved. To say that a situation represents an ethical dilemma is not to say that it is unresolvable; nor is it to say that any single resolution is as good as another. Rather, ethical dilemmas can be resolved adequately and consistently by applying a clear framework of analysis and guidelines for decision making. In this article, I describe ways of thinking about privacy and confidentiality that make ethical concerns related to these values more manageable. Despite the pluralistic nature of our society, the systematic study of contemporary ethical issues has led to some widely supported approaches for resolving ethical dilemmas. Although it would be exaggerating to claim full consensus among ethicists on what follows in this article, it is not exaggerating to say that the perspective represents a common approach to understanding privacy and confidentiality obligations and that many find these guidelines helpful in addressing specific situations.

Civil Rights↗

PubMed1994

Medicaid program: computer matching and privacy protection for Medicaid eligibility--HCFA. Final rule.

This final rule revises regulations concerning the income and eligibility verification system (IEVS) under the Medicaid program. It implements provisions of the Computer Matching and Privacy Protection Act of 1988 and the Computer Matching and Privacy Protection Amendments of 1990. These laws improve the oversight and procedures governing the disclosure of personal information used in computer matching programs and protect the privacy and due process rights of individuals whose records are exchanged by these programs.

Centers for Medicare and Medicaid Services, U.S.↗