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PubMed1988

Privacy Act of 1974; revision to existing system of records--HCFA. Notice of revision of Privacy Act system of records.

Notice is hereby given that HCFA is revising one of its systems of records, the Medicare Physician Identification and Eligibility Systems (MPIES), HHS/HCFA/BPO No. 09-70-0525, most recently published at 53 FR 21920; June 10, 1988. The Notice is being revised to reflect a change in the Records Source Categories section of the system. The revision contains no new routine uses.

Centers for Medicare and Medicaid Services, U.S.↗
PubMed2005

Notes on the tension between privacy and surveillance in nursing.

Given their 24 hour responsibility for care in many settings, nurses are the main arbiters of the privacy afforded or denied to patients. In this article the author delineates four aspects of privacy, namely: bodily privacy, space privacy, information privacy, and privacy of individual behaviour. He draws on a range of recent evidence that points to people's experiences of health care being unsatisfactory in terms of privacy, and offers explanations as to why much patient privacy is impossible. He argues that the patients' need for privacy is to a large extent in competition with the professional need for surveillance, noting that while nurses and others do maintain some patient expectations of privacy, these expectations are artificially low on the part of nurses, who are predisposed to invade privacy as an unconscious aspect of their maintenance of professional power. The author provides a discussion of the theoretical basis of this viewpoint, drawing on important insights from Foucault and Goffman, and concludes that an awareness of these issues can help to re-balance the tension between the need for privacy and the need for surveillance.

Confidentiality↗
PubMed2005

Patient perceptions of privacy infringements in an emergency department.

OBJECTIVE: To identify the nature, severity, impact, frequency and risk factors for patient perceived privacy infringements in the ED of St Vincent's Health Melbourne with 32,000 emergency attendances per annum. METHODS: Patients 18 years and older attending emergency over a 2-week period were offered a nine-item questionnaire using a Likert scale. A privacy incident was defined as: (i) overhearing medical or personal information; (ii) being overheard; (iii) having private body parts exposed or (iv) seeing others' body parts. Differences between demographic, emergency environment, length of stay and other factors suspected of affecting patient privacy were quantified. RESULTS: From 1169 emergency presentations, 235 patients returned questionnaires, with 105 of these (45%) reporting a total of 159 privacy incidents. Seventy-eight patients (33%, 95% CI 28-36%) reported a definite privacy incident and 81 (35%, 95% CI 29-37%) reported a probable privacy incident. Ninety-six patients (41%, 95% CI 35-47%) reported overhearing other patient's conversations with the staff whereas 36 (15%, 95% CI 11-21%) felt their conversations with staff were overheard by others. Twenty-seven patients (11%, 95% CI 6-14%) experienced or observed inappropriate exposure of private body parts. Ten patients (4%, 95% CI 2-7%) changed or withheld information from staff because they felt others may overhear it and two refused part of their physical examination because they felt they may be seen by inappropriate people. Twenty-four patients (10%, 95% CI 6-14%) did not have their expectations of privacy met. The longer a patient was in emergency the greater the number of privacy incidents they experienced (Spearman correlation P < 0.01). Patients in walled cubicles experienced fewer privacy incidents than those in curtained cubicles (P < 0.05). CONCLUSIONS: Patient privacy incidents occur frequently in an ED, risk factors being length of stay and absence of a walled cubicle. Patients who have their conversations overheard are more likely to withhold information from staff and less likely to have had their expectations of privacy met.

Age Distribution↗
PubMed2026

Is a Win-Win possible? Achieving pareto-optimal privacy-utility balance in fine-tuned genome language model embeddings against embedding reconstruction attacks.

MOTIVATION: Genomic data is among the most sensitive categories of personal information, and the growing adoption of language models for sequence analysis raises significant privacy concerns. Prior work demonstrated that embeddings from general-purpose language models adapted for genomic sequences leak substantial single-nucleotide information under reconstruction attacks, and that fine-tuning embeddings can reduce this vulnerability at certain positions. However, three critical questions remain unaddressed: (i) whether privacy-utility tradeoffs are inherent constraints or configuration-dependent phenomena; (ii) whether genomic-specialized models such as DNABERT-base and Nucleotide Transformer exhibit different vulnerabilities than adapted general-purpose models; and (iii) how to statistically validate whether observed privacy improvements represent meaningful gains. Addressing these gaps is essential for guiding model selection in privacy-sensitive genomic applications. RESULTS: We systematically evaluated 13 transformer architectures, 9 general-purpose and 4 genomic-specialized, under position-specific embedding reconstruction attacks. We assessed the vulnerabilities of both pre-trained and fine-tuned models to the single-nucleotide inference-reconstruction attack using our new metrics, including error-based privacy gain and Pareto dominance scores, and statistically validated the results via paired t-tests. XLNet-Large achieved the best observed privacy protection among all evaluated models (+19.5% mean privacy gain) while maintaining competitive prediction performance. General-purpose models outperformed genomic-specialized models in 56% of pairwise comparisons. Tokenization strategy, rather than domain specialization, emerged as the primary determinant of the privacy-utility balance. These findings provide evidence-based guidance for selecting models in privacy-sensitive short-window genomic applications. All privacy claims in this work are specific to position-wise embedding reconstruction attacks and do not extend to other privacy risks, such as membership inference or training data extraction, which may respond differently to fine-tuning. AVAILABILITY AND IMPLEMENTATION: The code is publicly available at https://github.com/AnonymousISCBConf/Win-Win-Privacy-Utility-Analysis.

Genomics↗
PubMed2004

The Health Insurance Portability and Accountability Act Privacy Rule: a practical guide for researchers.

BACKGROUND: The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule, intended to address potential threats to patient privacy posed by the computerization and standardization of medical records, provides a new floor level of federal protection for health information in all 50 states. In most cases, compliance with the Privacy Rule was required as of April 2003. Yet considerable confusion and concern remain about the Privacy Rule and the specific changes it requires in the way healthcare providers, health plans, and others use, maintain, and disclose health information. Researchers worry that the Privacy Rule could hinder their access to health information needed to conduct their research. OBJECTIVES: In this article, we explain how the final version of the Privacy Rule governs disclosure of health information, assess implications of the Privacy Rule for research, and offer practical suggestions for researchers who require access to health information. CONCLUSION: The Privacy Rule is fundamentally changing the way that healthcare providers, health plans, and others use, maintain, and disclose health information and the steps that researchers must take to obtain health data. The Privacy Rule requires researchers who seek access to identifiable health information to obtain written authorization from subjects, or, alternatively, to demonstrate that their research protocols meet certain Privacy Rule requirements that permit access without written authorization. To ensure continued access to data, researchers will need to work more closely than before with healthcare providers, health plans, and other institutions that generate and maintain health information.

Computer Security↗
PubMed2005

Privacy protection for HealthGrid applications.

OBJECTIVES: This contribution aims at introducing the problem of privacy protection in e-Health and at describing a number of existing privacy enhancing techniques (PETs). The recognition that privacy constitutes a fundamental right is gradually entering public awareness. Because healthcare-related data are susceptible to being abused for many obvious reasons, public apprehension about privacy has focused on medical data. Public authorities have become convinced of the need to enforce privacy protection and make considerable efforts for promoting through privacy protection legislation the deployment of PETs. METHODS: Based on the study of the specific features of Grid technology, ways in which PET services could be integrated in the HealthGrid are being analyzed. Grid technology aims at removing barriers between local and remote resources. The privacy and legal issues raised by the HealthGrid are caused by the transparent interchange and processing of sensitive medical information. PET technology has already proven its usefulness for privacy protection in health-related marketing and research data collection. RESULTS: While this paper does not describe market-ready solutions for privacy protection in the HealthGrid, it puts forward several cases in which the Grid may benefit from PETs. CONCLUSION: Early integration of privacy protection services into the HealthGrid can lead to a synergy that is beneficial for the development of the HealthGrid itself.

Access to Information↗
PubMed2006

Privacy and occupational health services.

Privacy is a key ethical principle in occupational health services. Its importance is emphasised in several laws, in ethical codes of conduct as well as in the literature, yet there is only very limited empirical research on privacy in the occupational health context. Conceptual questions on privacy in the occupational health context are discussed. The baseline assumption is that, in this context, privacy cannot be approached and examined only from the employee's (an individual) vantage point but the employer's (a group) point of view must also be taken into account, and that the concept has several dimensions (physical, social, informational and psychological). Even though privacy is a basic human need, there is no universally accepted definition of the concept and no consensus on whether an organisation can have privacy in the same way as people do. Many of the challenges surrounding privacy in the context of occupational health seem to be associated with the dual loyalties of occupational health professionals towards the employee and employer and with their simultaneous duties of disseminating and protecting information (informational privacy). Privacy is thus not an absolute value, but more research is needed to understand its multidimensional nature in the context of occupational health.

Attitude of Health Personnel↗
PubMed2001

The current privacy environment: implications for third-party research.

A privacy revolution is under way. Public opinion survey data indicate that public concern about information privacy has reached all-time highs in recent years and shows little, if any, sign of abating. Public concern is the result of many factors, including evolving attitudes toward information, distrust of institutions, concerns about technology, and fear of harm, to name a few. Privacy also receives increasing amounts of media attention, often with adverse results for those organizations engaging in the scrutinized information practices. This public concern (and media attention) has prompted considerable legislative and regulatory activity at both the federal and state levels. New health information privacy rules promulgated by the Department of Health and Human Services pursuant to implement the Health Insurance Portability and Accountability Act of 1996, once implemented, for example, will affect large segments of the health care industry. Many types of medical research will be affected, possibly including some third-party research. This article begins with a brief overview, including a definition of privacy and an examination of the role of privacy in the American tradition. The article examines the current privacy environment as reflected through public opinion surveys about privacy, both broadly and in the medical research context specifically. Finally, the article examines recent and pending regulatory activity regarding health information privacy and the prospects for additional legislation or regulation.

Confidentiality↗
PubMed2006

Customer privacy on UK healthcare websites.

Privacy has been and continues to be one of the key challenges of an age devoted to the accumulation, processing, and mining of electronic information. In particular, privacy of healthcare-related information is seen as a key issue as health organizations move towards the electronic provision of services. The aim of the research detailed in this paper has been to analyse privacy policies on popular UK healthcare-related websites to determine the extent to which consumer privacy is protected. The author has combined approaches (such as approaches focused on usability, policy content, and policy quality) used in studies by other researchers on e-commerce and US healthcare websites to provide a comprehensive analysis of UK healthcare privacy policies. The author identifies a wide range of issues related to the protection of consumer privacy through his research analysis using quantitative results. The main outcomes from the author's research are that only 61% of healthcare-related websites in their sample group posted privacy policies. In addition, most of the posted privacy policies had poor readability standards and included a variety of privacy vulnerability statements. Overall, the author's findings represent significant current issues in relation to healthcare information protection on the Internet. The hope is that raising awareness of these results will drive forward changes in the industry, similar to those experienced with information quality.

Confidentiality↗
PubMed2002

Reading level of privacy policies on Internet health Web sites.

OBJECTIVE: Most individuals would like to maintain the privacy of their medical information on the World Wide Web (WWW). In response, commercial interests and other sites post privacy policies that are designed to inform users of how their information will be used. However, it is not known if these statements are comprehensible to most WWW users. The purpose of this study was to determine the reading level of privacy statements on Internet health Web sites and to determine whether these statements can inform users of their rights. STUDY DESIGN: This was a descriptive study. Eighty Internet health sites were examined and the readability of their privacy policies was determined. The selected sample included the top 25 Internet health sites as well as other sites that a user might encounter while researching a common problem such as high blood pressure. Sixty percent of the sites were commercial (.com), 17.5% were organizations (.org), 8.8% were from the United Kingdom (.uk), 3.8% were United States governmental (.gov), and 2.5% were educational (.edu). OUTCOMES MEASURED: The readability level of the privacy policies was calculated using the Flesch, the Fry, and the SMOG readability levels. RESULTS: Of the 80 Internet health Web sites studied, 30% (including 23% of the commercial Web sites) had no privacy policy posted. The average readability level of the remaining sites required 2 years of college level education to comprehend, and no Web site had a privacy policy that was comprehensible by most English-speaking individuals in the United States. CONCLUSIONS: The privacy policies of health Web sites are not easily understood by most individuals in the United States and do not serve to inform users of their rights. Possible remedies include rewriting policies to make them comprehensible and protecting online health information by using legal statutes or standardized insignias indicating compliance with a set of privacy standards (eg, "Health on the Net" [HON] http://www.hon.ch).

Confidentiality↗
PubMed1998

Privacy in hospital.

Privacy during hospitalization can be jeopardized as caring situations are often intimate. The aims of the current study were to explore patients' and nurses' attitudes towards privacy and to study whether nurses' perceptions of patients' privacy needs corresponded with the patients' own reported needs. Two questionnaires were used for the data collection, which included 120 consecutive patients and 42 nurses responsible for the participating patients' individual care. The main findings indicated that patients and nurses agree in the ratings of the major components of privacy in general, but privacy in hospital was estimated more highly by the nurses than by the patients themselves. Being allowed to talk to the physician in private was given the highest preference. Patients in long-term care had higher privacy preferences than those in acute care. An explanatory approach is needed to study the need for privacy in different caring situations and how privacy needs could be recognized and met by nurses.

Adult↗
PubMed2002

Standards for privacy of individually identifiable health information. Final rule.

The Department of Health and Human Services ("HHS'' or "Department'') modifies certain standards in the Rule entitled "Standards for Privacy of Individually Identifiable Health Information'' ("Privacy Rule''). The Privacy Rule implements the privacy requirements of the Administrative Simplification subtitle of the Health Insurance Portability and Accountability Act of 1996. The purpose of these modifications is to maintain strong protections for the privacy of individually identifiable health information while clarifying certain of the Privacy Rule's provisions, addressing the unintended negative effects of the Privacy Rule on health care quality or access to health care, and relieving unintended administrative burdens created by the Privacy Rule.

Confidentiality↗