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Balkan Medical Journal Jan 2018Privacy was defined as a fundamental human right in the Universal Declaration of Human Rights at the 1948 United Nations General Assembly. However, there is still no... (Review)
Review
Privacy was defined as a fundamental human right in the Universal Declaration of Human Rights at the 1948 United Nations General Assembly. However, there is still no consensus on what constitutes privacy. In this review, we look at the evolution of privacy as a concept from the era of Hippocrates to the era of social media and big data. To appreciate the modern measures of patient privacy protection and correctly interpret the current regulatory framework in the United States, we need to analyze and understand the concepts of individually identifiable information, individually identifiable health information, protected health information, and de-identification. The Privacy Rule of the Health Insurance Portability and Accountability Act defines the regulatory framework and casts a balance between protective measures and access to health information for secondary (scientific) use. The rule defines the conditions when health information is protected by law and how protected health information can be de-identified for secondary use. With the advents of artificial intelligence and computational linguistics, computational text de-identification algorithms produce de-identified results nearly as well as those produced by human experts, but much faster, more consistently and basically for free. Modern clinical text de-identification systems now pave the road to big data and enable scientists to access de-identified clinical information while firmly protecting patient privacy. However, clinical text de-identification is not a perfect process. In order to maximize the protection of patient privacy and to free clinical and scientific information from the confines of electronic healthcare systems, all stakeholders, including patients, health institutions and institutional review boards, scientists and the scientific communities, as well as regulatory and law enforcement agencies must collaborate closely. On the one hand, public health laws and privacy regulations define rules and responsibilities such as requesting and granting only the amount of health information that is necessary for the scientific study. On the other hand, developers of de-identification systems provide guidelines to use different modes of operations to maximize the effectiveness of their tools and the success of de-identification. Institutions with clinical repositories need to follow these rules and guidelines closely to successfully protect patient privacy. To open the gates of big data to scientific communities, healthcare institutions need to be supported in their de-identification and data sharing efforts by the public, scientific communities, and local, state, and federal legislators and government agencies.
Topics: Algorithms; Big Data; Confidentiality; Data Anonymization; Health Insurance Portability and Accountability Act; Humans; Privacy; United States
PubMed: 28903886
DOI: 10.4274/balkanmedj.2017.0966 -
Acta Medica Academica May 2018In this manuscript we presented legal and ethical aspects of pain management. Pain is a global public health problem because the burden of acute and chronic pain is... (Review)
Review
UNLABELLED
In this manuscript we presented legal and ethical aspects of pain management. Pain is a global public health problem because the burden of acute and chronic pain is considerable and is continuously increasing. It has been postulated that pain management is a fundamental human right, and that health systems are obliged to ensure universal access to pain management services. The suggestion that pain management is a right was fuelled by ample evidence about inadequate treatment of pain. Undertreatment and underprescribing in the context of pain can potentially have serious legal consequences, including charges about negligence, elder abuse, manslaughter and euthanasia. Multiple international declarations by professional societies have outlined pain management as a core ethical duty in medicine. Therefore, healthcare professionals need to be aware of multiple facets of pain-related ethics, including appraisal of patient's decision-making capacity. The worldwide opioid crisis also calls for careful consideration of specific ethical issues. Finally, healthcare workers need to be aware of the the risks associated with promoting pain management as a human right because patients and their caretakers can mistakenly perceive that they have right to total analgesia.
CONCLUSION
Patients do have the right to pain management, but patient rights have limits, which may interfere with other competing rights, and also rights of their physicians. Treatment of pain must be medically, ethically and economically justified. Healthcare workers have an obligation to continuously improve their knowledge about pain management, including medical, legal and ethical aspects of pain.
Topics: Analgesics, Opioid; Delivery of Health Care; Human Rights; Humans; Informed Consent; Mental Competency; Moral Obligations; Pain; Pain Management; Professional-Patient Relations
PubMed: 29957968
DOI: 10.5644/ama2006-124.211 -
Soins; La Revue de Reference Infirmiere Apr 2018Autonomy forms the foundation of ethical duties and the primary reason for the respect owed to human beings. Despite the limits sometimes encountered, the patient must...
Autonomy forms the foundation of ethical duties and the primary reason for the respect owed to human beings. Despite the limits sometimes encountered, the patient must always remain at the heart of his or her own individual battle.
Topics: Ethics, Nursing; Humans; Nurse-Patient Relations; Patient Rights; Personal Autonomy
PubMed: 29680133
DOI: 10.1016/j.soin.2018.02.004 -
Soins; La Revue de Reference Infirmiere 2018
Topics: Emotions; Empathy; Human Body; Humans; Informed Consent; Meaningful Use; Nurse-Patient Relations; Nursing Care; Patient Rights; Treatment Refusal
PubMed: 29439786
DOI: 10.1016/j.soin.2017.12.001 -
Ciencia & Saude Coletiva Dec 2017
Topics: Brazil; Human Rights; Humans; Patient Rights; Public Health
PubMed: 29267700
DOI: 10.1590/1413-812320172212.24382017 -
BMC Medicine Jan 2018Disability as a health outcome deserves more attention than it has so far received. With people living longer and the epidemiological transition from infectious to...
Disability as a health outcome deserves more attention than it has so far received. With people living longer and the epidemiological transition from infectious to noncommunicable diseases as the major cause of health burden, we need to focus attention on disability - the non-fatal impact of heath conditions - over and above our concern for causes of mortality.With the first Global Burden of Disease study, WHO provided a metric that enabled the comparison of the impact of diseases, drawing on a model of disability that focused on decrements of health. This model has since been elaborated in the International Classification of Functioning, Disability and Health as being either a feature of the individual or arising out of the interaction between the individual's health condition and contextual factors. The basis of WHO's ongoing work is a set of principles: that disability is a universal human experience; that disability is not determined solely by the underlying health condition or predicated merely on the presence of specific health conditions; and finally, that disability lies on a continuum from no to complete disability. To determine whether interventions at individual or population levels are effective, an approach to disability measurement that allows for an appropriate and fair comparison across health conditions is needed. WHO has designed the Model Disability Survey (MDS) to collect information relevant to understand the lived experience of disability, including the person's capacity to perform tasks actions in daily life, their actual performance, the barriers and facilitators in the environment they experience, and their health conditions. As disability gains prominence within the development agenda in the United Nations Sustainable Development Goals, and the implementation of the United Nations Convention on the Rights of Persons with Disabilities, the MDS will provide the data to monitor the progress of countries on meeting their obligations.The lesson learned from WHO's activities is that disability is a universal human experience, in the sense that everyone can be placed on a continuum of functioning and either currently experiences or is vulnerable to experiencing disability over the course of their lives. This understanding of disability is the key to mainstreaming disability within the public discourse.
Topics: Comprehension; Disability Evaluation; Disabled Persons; Environment; Female; Health Status Indicators; Humans; International Classification of Functioning, Disability and Health; Male; Patient Rights; Public Health; Surveys and Questionnaires; Thinking; United Nations; World Health Organization
PubMed: 29370847
DOI: 10.1186/s12916-017-1002-6 -
Frontiers in Public Health 2022We describe relevant interfaces between law and psychiatry and current ethical and legal views and changes within the past decades. Ideas of patient autonomy and...
We describe relevant interfaces between law and psychiatry and current ethical and legal views and changes within the past decades. Ideas of patient autonomy and patients' rights have been major drivers of changes in legal frameworks. We describe developments in the areas of patient information and informed consent, involuntary placement and involuntary treatment, use of coercive measures, forensic psychiatry, digital mental health, data privacy, physician liability, suicide, assisted suicide, euthanasia, end of life decision-making, advance directives, legal and illegal drugs, and delegation and substitution of professional activities. There is no unidirectional pathway between law and ethics. Views, conflicts, and requirements differ between countries and within countries and will need to be balanced according to the societies' changing values also in the future.
Topics: Advance Directives; Humans; Informed Consent; Mental Health; Physicians; Psychiatry
PubMed: 36091517
DOI: 10.3389/fpubh.2022.968168 -
Revista Da Escola de Enfermagem Da U S P 2021To synthesize current evidence on nurses' attitudes and/or knowledge on the entire spectrum of patient rights.
OBJECTIVE
To synthesize current evidence on nurses' attitudes and/or knowledge on the entire spectrum of patient rights.
METHOD
A systematic search of the literature was performed in Web of Science, PubMed, Scopus and CINAHL. Studies were selected according to pre-defined inclusion/exclusion criteria. The Cochrane and PRISMA guidelines, including templates for systematic reviews, were applied. For rigor assessment, the Critical Appraisal Skills Program Qualitative Research Checklist, and the Center for Evidence-Based Management tool were employed.
RESULTS
Thirteen studies were included, that exhibited important methodological limitations, such as convenience sampling, mediocre response rates and inadequate instrument validity. Findings indicated: a) low level of awareness regarding patient rights among nurses, b) knowledge discrepancies on specific aspects of patient rights, c) low priority ascribed to a patient's right to access information, and d) insufficient evidence on formal educational sources of knowledge on the topic of patient rights.
CONCLUSION
Narrow geographical localization, heterogeneity and methodological limitations render generalizability of the conclusions difficult. Further research based on robust methodology is proposed.
Topics: Attitude; Humans; Nurses; Patient Rights; Qualitative Research
PubMed: 33825782
DOI: 10.1590/S1980-220X2019037603678 -
The Lancet. Digital Health Jun 2023Fuelled by adaptations to clinical trial implementation during the COVID-19 pandemic, decentralised clinical trials are burgeoning. Decentralised clinical trials involve... (Review)
Review
Fuelled by adaptations to clinical trial implementation during the COVID-19 pandemic, decentralised clinical trials are burgeoning. Decentralised clinical trials involve many digital tools to facilitate research without physical contact between research teams and participants at various stages, such as recruitment, enrolment, informed consent, administering study interventions, obtaining patient-reported outcome measures, and safety monitoring. These tools can provide ways of ensuring participants' safety and research integrity, while sometimes reducing participant burden and trial cost. Research sponsors and investigators are interested in expanding the use of decentralised clinical trials. The US Food and Drug Administration and other regulators worldwide have issued guidance on how to implement such adaptations. However, there has been little focus on the distinct ethical challenges these trials pose. In this Health Policy report, which is informed by both traditional research ethics and digital ethics frameworks, we group the related ethical issues under three areas requiring increased ethical vigilance: participants' safety and rights, scientific validity, and ethics oversight. Our aim is to describe these issues, offer practical means of addressing them, and prompt the delineation of ethical standards for decentralised trials.
Topics: Humans; Pandemics; COVID-19; Informed Consent; Ethics, Research; Research Personnel
PubMed: 37105800
DOI: 10.1016/S2589-7500(23)00052-3 -
Tidsskrift For Den Norske Laegeforening... Sep 2017
Topics: Health Services Accessibility; Health Status; Humans; Norway; Patient Rights; Undocumented Immigrants
PubMed: 28925185
DOI: 10.4045/tidsskr.17.0764