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At least 343 records · Page 19Linked to original sources
PubMed2005

A patient registry for cognitive rehabilitation research: a strategy for balancing patients' privacy rights with researchers' need for access.

OBJECTIVE: To describe a consent-based Patient Research Registry designed to improve the quality and efficiency of cognitive rehabilitation research by balancing patients' privacy rights with researchers' need for access to research participants. DESIGN: Description of a protocol for a Patient Research Registry. SETTING: Three rehabilitation hospitals. PARTICIPANTS: Inpatients with stroke or traumatic brain injury (TBI) at the 3 participating hospitals. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Percentages of eligible patients with stroke or TBI who consented to be enrolled in the Registry, were subsequently contacted about a study, and ultimately participated in a study. A survey examined satisfaction with the Registry among researchers who used it for recruitment. RESULTS: After 36 months of operation, 58% of patients approached have consented to be in the Registry (N=1256). Eighty-seven percent of those later identified as potential subjects for research studies expressed interest, and 63% eventually participated. Researchers reported satisfaction with the recruitment opportunities afforded by the Registry. CONCLUSIONS: The Registry succeeded in identifying eligible patients interested in participating in research studies, while safeguarding their privacy rights. We identify its strengths and limitations and characterize the type of facility that would most profit from adopting this recruitment model.

Brain Injuries↗
PubMed2004

Medical privacy protection based on granular computing.

Based on granular computing methodology, we propose two criteria to quantitatively measure privacy invasion. The total cost criterion measures the effort needed for a data recipient to find private information. The average benefit criterion measures the benefit a data recipient obtains when he received the released data. These two criteria remedy the inadequacy of the deterministic privacy formulation proposed in Proceedings of Asia Pacific Medical Informatics Conference, 2000; Int J Med Inform 2003;71:17-23. Granular computing methodology provides a unified framework for these quantitative measurements and previous bin size and logical approaches. These two new criteria are implemented in a prototype system Cellsecu 2.0. Preliminary system performance evaluation is conducted and reviewed.

Computing Methodologies↗
PubMed2006

Taiwan's perspective on electronic medical records' security and privacy protection: lessons learned from HIPAA.

The protection of patients' health information is a very important concern in the information age. The purpose of this study is to ascertain what constitutes an effective legal framework in protecting both the security and privacy of health information, especially electronic medical records. All sorts of bills regarding electronic medical data protection have been proposed around the world including Health Insurance Portability and Accountability Act (HIPAA) of the U.S. The trend of a centralized bill that focuses on managing computerized health information is the part that needs our further attention. Under the sponsor of Taiwan's Department of Health (DOH), our expert panel drafted the "Medical Information Security and Privacy Protection Guidelines", which identifies nine principles and entails 12 articles, in the hope that medical organizations will have an effective reference in how to manage their medical information in a confidential and secured fashion especially in electronic transactions.

Computer Security↗
PubMedDate not supplied

Inter-facility transfer of patient information before and after HIPAA privacy measures.

OBJECTIVES: The study objectives were (1) to test whether interfacility communication of health information at the time of patient transfer changed as a result of implementation of US privacy protection measures (HIPAA) in April 2003, and (2) to examine patient, transfer, and illness characteristics correlated with interfacility transfer document completion. DESIGN: Observational study. PARTICIPANTS AND SETTING: Individuals transferred between a 514-bed urban nursing home and a 1171-bed academic hospital in New York City. MEASUREMENTS: Research staff reviewed medical records of patients transferred both ways between nursing home and hospital, examining interfacility transfer documents for 12 items important for continuity of care. Transfer document completeness equaled the percentage of items recorded and legible in transfer documents. Transfers were classified by direction (nursing home-to-hospital [NH-to-H] or hospital-to-nursing home [H-to-NH]), urgency (urgent or not), timing (weekday 9 am to 6 pm or other), and by whether they occurred before 12 am April 14, 2003 (pre-HIPAA), or after (post-HIPAA). RESULTS: Seventy-eight nursing home residents experienced 100 hospital admissions. NH-to-H transfer documents were more complete than H-to-NH documents (86.7% vs 69.0%; P = .002). There were no significant differences between content of transfer documents between pre- and post-HIPAA transfers in either direction of transfer, with and without controlling for patient and illness characteristics. Older age, female gender, dementia diagnosis, shorter duration of nursing home residence, and off-hours hospital transfer were associated with less complete NH-to-H transfer documents, and shorter hospital length of stay was associated with less complete H-to-NH transfer documents. CONCLUSION: There was no change in written health information communicated during patient transfer between an urban nursing home and an academic hospital before and after HIPAA privacy protection measures were implemented. This suggests that the rule's intent to not restrict the sharing of information needed to treat patients is being followed by providers at these sites in the situation of interfacility patient transfer.

Academic Medical Centers↗
PubMed2006

Inter-facility transfer of patient information before and after HIPAA privacy measures.

OBJECTIVES: The study objectives were (1) to test whether interfacility communication of health information at the time of patient transfer changed as a result of implementation of US privacy protection measures (HIPAA) in April 2003, and (2) to examine patient, transfer, and illness characteristics correlated with interfacility transfer document completion. DESIGN: Observational study. PARTICIPANTS AND SETTING: Individuals transferred between a 514-bed urban nursing home and a 1171-bed academic hospital in New York City. MEASUREMENTS: Research staff reviewed medical records of patients transferred both ways between nursing home and hospital, examining interfacility transfer documents for 12 items important for continuity of care. Transfer document completeness equaled the percentage of items recorded and legible in transfer documents. Transfers were classified by direction (nursing home-to-hospital [NH-to-H] or hospital-to-nursing home [H-to-NH]), urgency (urgent or not), timing (weekday 9 am to 6 pm or other), and by whether they occurred before 12 am April 14, 2003 (pre-HIPAA), or after (post-HIPAA). RESULTS: Seventy-eight nursing home residents experienced 100 hospital admissions. NH-to-H transfer documents were more complete than H-to-NH documents (86.7% vs 69.0%; P = .002). There were no significant differences between content of transfer documents between pre- and post-HIPAA transfers in either direction of transfer, with and without controlling for patient and illness characteristics. Older age, female gender, dementia diagnosis, shorter duration of nursing home residence, and off-hours hospital transfer were associated with less complete NH-to-H transfer documents, and shorter hospital length of stay was associated with less complete H-to-NH transfer documents. CONCLUSION: There was no change in written health information communicated during patient transfer between an urban nursing home and an academic hospital before and after HIPAA privacy protection measures were implemented. This suggests that the rule's intent to not restrict the sharing of information needed to treat patients is being followed by providers at these sites in the situation of interfacility patient transfer.

Journal Article↗
PubMed2006

Patients, privacy and trust: patients' willingness to allow researchers to access their medical records.

The federal Privacy Rule, implemented in the United States in 2003, as part of the Health Insurance Portability and Accountability Act of 1996 (HIPAA), created new restrictions on the release of medical information for research. Many believe that its restrictions have fallen disproportionately on researchers prompting some to call for changes to the Rule. Here we ask what patients think about researchers' access to medical records, and what influences these opinions. A sample of 217 patients from 4 Veteran Affairs (VA) facilities deliberated in small groups at each location with the opportunity to question experts and inform themselves about privacy issues related to medical records research. After extensive deliberation, these patients were united in their inclination to share their medical records for research. Yet they were also united in their recommendations to institute procedures that would give them more control over whether and how their medical records are used for research. We integrated qualitative and quantitative results to derive a better understanding of this apparent paradox. Our findings can best be presented as answers to questions related to five dimensions of trust: Patients' trust in VA researchers was the most powerful determinant of the kind of control they want over their medical records. More specifically, those who had lower trust in VA researchers were more likely to recommend a more stringent process for obtaining individual consent. Insights on the critical role of trust suggest actions that researchers and others can take to more fully engage patients in research.

Aged↗
PubMed2002

Privacy and security of medical information.

Increasingly, medical information is being stored, accessed, and communicated electronically, which makes this information vulnerable to breaches in security and privacy. Clinicians must be familiar with the best practices for keeping medical information private, as well as the local, state, and federal regulations that govern the security, privacy and patient-identifiable information. Noncompliance carries the potential for civil and criminal penalties.

Computer Security↗
PubMed2004

The costs of safeguarding privacy: one research organization's experience.

While academic health research has always observed strict vigilance in the guardianship of the rich information found in health databases, new legislation faced by all organizations ups the ante even higher. Research organizations like the Institute for Clinical Evaluative Sciences are delving into even more rigorous policies to keep sensitive information secure while preserving the value that dedicated research provides. The costs of implementing privacy protections are of great concern to Canadian researchers. This report discusses basic costs associated with privacy practices undertaken at the Institute.

Canada↗
PubMed1994

Privacy, confidentiality, and privilege in psychotherapeutic relationships.

The dilemma faced by mental health professionals in guaranteeing clients' privacy and confidentiality while complying with the legitimate requests of third parties for confidential information is addressed. How that dilemma is played out in relation to child-abuse reporting laws is examined in terms of the legal and ethical aspects of privacy, confidentiality, and privilege in mental health practice.

Adolescent↗
PubMed2004

Privacy and identity in a changing world.

OBJECTIVE: To consider the issues of privacy and identity relevant to psychiatric practice in the context of recent technological initiatives and the society that has produced them. CONCLUSIONS: Emerging technologies may have implications for the ways in which Western society relates. These are likely to affect the ways patients present, their concerns and how we may best assist them. Psychiatry may also be of benefit in the evaluation of the privacy implications of new technologies.

Attitude to Computers↗
PubMed2002

Medical privacy and its value for patients.

OBJECTIVES: To review privacy issues of medical information and current legal guidelines. DATA SOURCES: Government regulations and reports. CONCLUSIONS: Patients must have trust and confidence that the health care system will safeguard their health information and that it will not be used to discriminate against them through insurance or employment. IMPLICATIONS FOR NURSING PRACTICE: Health care professionals must be sensitive to the privacy needs of patients during the collection and storage of data, the access to information, and the sharing of patient information.

Confidentiality↗
PubMed2006

Medical confidentiality and patient privacy: the Jewish perspective.

This article presents the approach of Jewish law to the major issue of medical confidentiality and patient privacy. For an extensive discussion of Jewish medical ethics and an in-depth presentation of the Jewish view of 39 major issues in medical ethics, the reader is referred elsewhere [15]. Briefly, the Jewish view toward medical ethical subjects is predicated on the general principle of the supreme value of human life. In Judaism, all biblical and rabbinic laws are temporarily waived in order to save a human life. Physicians are obligated to heal patients from their illness, to induce remission and cure of disease whenever possible. Similarly, patients are obligated to lead healthy lifestyles, to consult physicians when they are sick and to be compliant with the physician's therapeutic recommendations. The Jewish view on medical confidentiality and patient privacy as presented in this essay flows from these general principles of Jewish medical ethics.

Confidentiality↗
PubMed1991

The enduring concerns of privacy and confidentiality.

As nursing pervades the vast majority of health care, clear and strong cries for protection of individual privacy and confidentiality are warranted. Because nursing is often involved in evaluation and quality care issues, we need to identify those arenas that potentially violate patient and employee rights of privacy and confidentiality and establish strong and clear policies that seek to protect these individuals from unnecessary intrusion. The problems promise to be complex, so the solutions need to be creative. The talent is available, but only if we focus our attention on the tasks at hand will these issues be resolved appropriately.

Confidentiality↗
PubMed1994

Privacy and confidentiality of patient information. Challenges for nursing.

The growing interest in automating healthcare information and the emergence of the computer-based patient record-keeping have brought the issues of privacy and confidentiality to the fore-front. Nurse executives and nurse managers need to be sensitive to these issues, as never before, to guide their staffs and to prevent harm. Technology makes sensitive information more accessible to more people, with resulting benefits and dangers. The author presents a nursing ethical framework for discussing patient privacy and confidentiality issues, and highlights specific issues that reflect nursing's unique viewpoints.

Codes of Ethics↗
PubMed2000

Electronic medical records and patient privacy.

Networks of health care providers and payers increasingly rely upon electronic databases to coordinate and analyze medical information. Benefits of linking databases include saving lives and reducing costs. However, access to and use of medical records raise serious privacy concerns. Potential misuse of records may harm patients and undermine the quality of health care. In the clinical setting, stringent security procedures must be instituted, including limited access to electronic records, audit trails, and security audits. Patient consent should be obtained before personal information is disclosed. Current law does not provide the strong, consistent guidelines needed. Adequate privacy protection requires a comprehensive federal law.

Confidentiality↗
PubMed2025

Privacy-Enhancing Sequential Learning under Heterogeneous Selection Bias in Multi-Site EHR Data.

OBJECTIVE: To develop privacy-enhancing statistical methods for estimation of binary disease risk model association parameters across multiple electronic health record (EHR) sites with heterogeneous selection mechanisms, without sharing raw individual-level data. We illustrate their utility through a cross-biobank analysis of smoking and 97 cancer subtypes using data from the NIH All of Us (AOU) and the Michigan Genomics Initiative (MGI). MATERIALS AND METHODS: Large-scale biobanks often follow heterogeneous recruitment strategies and store data in separate cloud-based platforms, making centralized algorithms infeasible. To address this, we propose two decentralized sequential estimators namely, Sequential Pseudo-likelihood (SPL) and Sequential Augmented Inverse Probability Weighting (SAIPW) that leverage external population-level information to adjust for selection bias, with valid variance estimation. SAIPW additionally protects against misspecification of the selection model using flexible machine learning based auxiliary outcome models. We compare SPL and SAIPW with the existing Sequential Unweighted (SUW) estimator and with centralized and meta learning extensions of IPW and AIPW in simulations under both correctly specified and misspecified selection mechanisms. We apply the methods to harmonized data from MGI ( n = 50,935) and AOU ( n = 241,563) to estimate smoking-cancer associations. RESULTS: In simulations, SUW exhibited substantial bias and poor coverage. SPL and SAIPW yielded unbiased estimates with valid coverage probabilities under correct model specification, with SAIPW remaining robust under selection model misspecification. Both approaches showed no notable efficiency loss relative to centralized methods. Meta-learning methods were efficient for large sites but failed in settings with small cohort sizes and rare outcome prevalence. In real-data analysis, strong associations were consistently identified between smoking and cancers of the lung, bladder, and larynx, aligning with established epidemiological evidence. CONCLUSION: Our framework enables valid, privacy-enhancing inference across EHR cohorts with heterogeneous selection, supporting scalable, decentralized research using real-world data.

Journal Article↗
PubMed1997

'That's the problem with living in a small town': privacy and sexual health issues for young rural people.

Survey and focus group discussions examining sexual health issues for young people were conducted with 1168 year 8 and year 10 secondary school students living in small rural communities across Australia. Growing up in the country was generally perceived as a positive experience; however, many young people felt that they had little privacy. Two main areas of concern emerged in relation to sexual health issues: worries about being recognised in public venues such as doctor's surgeries and chemists, and the informal mechanisms among peer groups that appraised and regulated sexual behaviour and attitudes. There were some significant gender differences evident in the expectations and experiences attached to these concerns, with girls expressing more awareness of and concern towards their public reputations when accessing sexual health services. They also felt that their sexual reputations among peers were closely monitored by way of their behaviour and appearance. This can militate against confident and assertive safer sex strategies such as condom use, when initiating or insisting upon condom use is construed as evidence of promiscuity or a preparedness to engage in sex. Concerns around privacy may be acutely experienced by young rural women, and health services providers need to be aware of these issues and efforts need to be made to address and allay the apprehensions of young people in this sensitive area.

Adolescent↗
PubMed1992

Protecting the privacy of patient information in clinical networks: regulatory effectiveness analysis.

Patient privacy is one of the major issues in the development of modern clinical information system networks. Such networks will have to demonstrate an appropriate concern for privacy as a precondition of operation. Regulatory effectiveness analysis is a novel technique for measuring compliance with a technological regulatory system. By examining the public policies, legal structures, and technical tools involved in the regulatory system, it is possible to discover discontinuities that may result in noncompliance with the regulatory system.

Civil Rights↗