IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of (...) the empirical evidence addressing patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed, Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests. (shrink)

Informed consent bears significant relevance as a legal basis for the processing of personal data and health data in the current privacy, data protection and confidentiality legislations. The consent requirements find their basis in an ideal of personal autonomy. Yet, with the recent advent of the global pandemic and the increased use of eHealth applications in its wake, a more differentiated perspective with regards to this normative approach might soon gain momentum. This paper discusses the compatibility (...) of a moral duty to share data for the sake of the improvement of healthcare, research, and public health with autonomy in the field of data protection, privacy and medical confidentiality. It explores several ethical-theoretical justifications for a duty of data sharing, and then reflects on how existing privacy, data protection, and confidentiality legislations could obstruct such a duty. Consent, as currently defined in the General Data Protection Regulation – a key legislative framework providing rules on the processing of personal data and data concerning health – and in the recommendation of the Council of Europe on the protection of health-related data – explored here as soft-law – turns out not to be indispensable from various ethical perspectives, while the requirement of consent in the General Data Protection Regulation and the recommendation nonetheless curtails the full potential of a duty to share medical data. Also other legal grounds as possible alternatives for consent seem to constitute an impediment. (shrink)

It is reasonable to consider and trust that information taken from us about our medical health and history will be protected by rules on confidentiality and consent. Apart from very rare cases, perhaps of major public interest or for public health reasons, this information will not be shared with others without our consent. However, both a number of reforms in National Health Service patient data management policy and developments in the general law on privacy challenge this traditional (...) view of our control and choice over our medical information, as this article will show. In doing so, it analyses the question as to whether in spite of the rhetoric do any of us now really have choice over the access to and use of our medical data? In reality, our choices are limited and in any relationship of trust and shared decision making this ought to be transparent. (shrink)

In M.A.K. v. Rush-Presbyterian-St. Luke's Medical Center, the Illinois Supreme Court reversed the appellate court and held that the phrase any physician, medical practitioner, hospital, clinic, health care facility or other medical or medically related facility, in a patient's signed consent form met the general designation requirement of the Code of Federal Regulations for the release of alcohol and drug abuse treatment records. Thus, the Illinois Supreme Court held that the medical center's release of a patient's records did (...) not violate the federal Confidentiality of Alcohol and Drug Abuse Patient Records regulations. (shrink)

BackgroundThe principles of informed consent, confidentiality and privacy are often neglected during patient care in developing countries. We assessed the degree to which doctors in Lahore adhere to these principles during outpatient consultations.Material & MethodThe study was conducted at medical out-patient departments (OPDs) of two tertiary care hospitals (one public and one private hospital) of Lahore, selected using multi-stage sampling. 93 patients were selected from each hospital. Doctors' adherence to the principles of informed consent, privacy and (...) class='Hi'>confidentiality was observed through client flow analysis performed by trained personnel. Overall patient perception was also assessed regarding these practices and was compared with the assessment made by our data collectors.ResultsSome degree of informed consent was obtained from only 9.7% patients in the public hospital and 47.8% in the private hospital. 81.4% of patients in the public hospital and 88.4% in the private hospital were accorded at least some degree of privacy. Complete informational confidentiality was maintained only in 10.8% and 35.5% of cases in public & private hospitals respectively. Informed consent and confidentiality were better practiced in the private compared to the public hospital (two-sample t-test > 2, p value < 0.05). There was marked disparity between the patients' perspective of these ethical practices and the assessment of our trained data collectors.ConclusionObservance of medical ethics is inadequate in hospitals of Lahore. Doctors should be imparted formal training in medical ethics and national legislation on medical ethics is needed. Patients should be made aware of their rights to medical ethics. (shrink)

The processing of sensitive information in the health field is subject to rigorous standards that guarantee the protection of information confidentiality. Recently, the Italian Data Protection Authority (Garante per la Protezione dei Dati Personali) stated their formal opinion on a standard procedure in dental offices involving the submission of a questionnaire that includes the patient's health status. HIV infection status is included on the form. The Authority has stated that all health data collection must be in (...) accordance with the current Italian normative framework for personal data protection and respect the patient's freedom. This freedom allows the patient to decide, in a conscious and responsible way, whether to share health information with health personnel without experiencing any prejudice in the provision of healthcare requested. Moreover, data collection must be relevant and cannot exceed the principles of treatment goals with reference to the specific care of the concerned person. However, the need for recording information regarding HIV infection at the first appointment, regardless of the clinical intervention or therapeutic plan that needs to be conducted, should not alter the standard protection measures of the healthcare staff. In fact, these measures are adopted for every patient. (shrink)

In the practice of medicine there has long been a conflict between patient management and respect for patient autonomy. In recent years this conflict has taken on a new form as patient management has increasingly been shifted from physicians to insurers, employers, and health care bureaucracies. The consequence has been a diminshment of both physician and patient autonomy and a parallel diminishment of medical record confidentiality. Although the new managers pay lip service to the rights (...) of patients to confidentiality of their records, in fact they advocate very liberal medical records access policies. They argue that a wide range of parties has a need to know the contents of individually identifiable medical records in order to control costs, promote quality of care, and undertake research in the public interest. Broad interpretations of the need to know, however, are at odds with strict interpretations of the right to confidentiality. Strict confidentiality policies require that, with few exceptions, patient consent be obtained whenever a patient's record is used outside the treatment context. The traditional criterion for overriding the consent requirement has been that without the override some harm would directly result. This rule is now challenged by the claim that patients have a duty to make their records available for a wide range of research and public health purposes. The longstanding tension between physician responsibility for patient welfare and respect for patient autonomy is being replaced by a debatable requirement that both physician and patient autonomy be subordinated to the goals of data collection and analysis. (shrink)

The physician’s duty of confidentiality is based on the observance of the patient’s privacy and intimacy and on the importance of respecting both of these rights, thus creating a relationship of confidence and collaboration between doctor and patient. The main objective of this work consists of analyzing the aspects that are related to the confidentiality of patients’ data with respect to the training, conduct and opinions of doctors from different Clinical Management Units of a third-level (...) hospital via a questionnaire. The present study aimed to define the problem and determine whether the opinions of these professionals correspond to those observed in a previous work conducted at the same center. Of the 200 questionnaires that were collected, 62.5% were from consultants and the rest were from residents with an average of 14.4 ± 12.5 years in professional practice. The respondents noted habitual situations in which confidentiality was breached in the reference hospital. The section on their attitudes and behaviors towards situations related to confidentiality showed a slightly lower average score than that of their medical knowledge; significant differences in these scores were observed between the consultants and residents as well as between the extreme age groups and years of professional practice, thus more inadequate attitudes were consistently noted in younger doctors who had fewer years of experience. Finally, the respondents answered that the training of doctors in the aspects of healthcare law and ethics was the most important measure that the hospital could adopt regarding confidentiality practices. (shrink)

Aim:This study explores experiences of patients suffering from Korsakoff’s syndrome. It contributes to improved reflection on the value of patient knowledge.Background:An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients’ individual needs necessary to provide good care. The information given by patients suffering from Korsakoff’s syndrome might be mistaken, invented and even not true. The value of these patients’ experiences and knowledge had not been researched to (...) date.Method:Data from six in-depth interviews were analysed concurrently through the constant comparative method.Ethical considerations:The principles of voluntariness, confidentiality and anonymity were respected during the research process.Findings:Four important themes within patients’ knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective.Conclusion:This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients’ unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staff in healthcare institutions are encouraged to evaluate the – unintended – effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff’s syndrome. (shrink)

Recent large-scale personal data loss incidents highlighted the need for public bodies to more securely handle confidential data. We surveyed trainees from all specialties in the Welsh Deanery for their knowledge and practice. All registered trainees were invited to participate in an online anonymised survey. There were 880 completed and non-duplicated responses (52.9% response rate). Responses were analysed using Microsoft Access. Over 40% (388/880 (44.1%)) did not use formal guidelines on storage or disposal of confidential data. The (...) majority appeared to dispose of confidential paper documents securely, that is, using shredders and white shredder bags. However, there were significant numbers of unmarked responses. Clinical documents, such as theatre lists, were taken home by 281/880 (31.9%) of trainees. The majority secured their computers (569/871 (65.3%)) by either not keeping patient identifiable data on them or using encryption. However, 302/871 (34.7%) did not adequately secure their computers. The surgical and anaesthetic specialties were least aware of formal confidentiality guidelines (95/178 (53.4%)) and 52/102 (51.0%) respectively) and least secured their computers (106/178 (59.6%) and 63/102 (61.8%) respectively). Education is needed to improve knowledge and practice of confidential data handling. This may be delivered through workshops during induction programmes or as part of European Computer Driving Licence (ECDL) modules. Training is especially indicated for the surgical and anaesthetic specialties. (shrink)

Objectives: Recent legislative changes within the United Kingdom have stimulated professional debate about access to patient data within research. However, there is currently little awareness of public views about such research. The authors sought to explore attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient consent was not being sought.Methods: 49 members of the public and four non-medical members of local community health councils in (...) South Wales, UK gave their views on the value and acceptability of three current research scenarios, each describing access to data without patient consent.Results: Among focus group participants, awareness of research in primary care was low, and the appropriateness of general practitioners as researchers was questioned. There was general support for research but also concerns expressed about data collection without consent. These included lack of respect and patient control over the process. Unauthorised access to data by external agencies was a common fear. Current data collection practices, including population based disease registers elicited much anxiety. The key informants were equally critical of the scenarios and generally less accepting.Conclusions: This exploratory study has highlighted a number of areas of public concern when medical records are accessed for research without patient consent. Public acceptability regarding the use of medical records in research cannot simply be assumed. Further work is required to determine how widespread such views are and to inform those advising on confidentiality issues. (shrink)

The present study aims to survey Chinese mental health professionals’ attitudes toward therapeutic confidentiality with adolescent patients in specific clinical situations, and compare Chinese adolescents’ and parents’ beliefs about when most mental health professionals would breach confidentiality. A sample of 36 mental health practitioners, 152 parents, and 164 adolescents completed a survey to assess their opinions about when confidentiality should be breached in 18 specific clinical situations. Nearly half of the parents and adolescents and 78% of the (...) therapists in our sample selected “yes” in response to the question of whether the principle of confidentiality applies to adolescents. However, 49% of parents indicated “no,” and 53% of adolescents indicated “not sure.” Compared to adolescents, parents were significantly more likely to believe that therapists would breach confidentiality for the high-breach-likelihood items. For the low-breach-likelihood items, adolescents and parents were significantly more likely than therapists to believe confidentiality should be breached. Results from this study provide data to inform the development, refinement, practical implementation, and communication of guidelines and recommendations specific to adolescents receiving psychotherapy in China. (shrink)

Doctors have an ethical and legal duty to respect patient confidentiality. We consider the basis for this duty, looking particularly at the meaning and value of autonomy in health care. Enabling patients to decide how information about them is disclosed is an important element in autonomy and helps patients engage as active partners in their care.Good quality data is, however, essential for research, education, public health monitoring, and for many other activities essential to provision of health care. (...) We discuss whether it is necessary to choose between individual rights and the wider public interest and conclude that this should only rarely be necessary. The paper makes some recommendations on practical steps which could help ensure that good quality information is available for work which benefits society and the public health, while still enabling patients’ autonomy to be respected. (shrink)

Dignity is a value inherent to all human beings, guaranteed to every individual from birth, and influenced by culture and society. It is protected by various laws and declarations, and represents one of the fundamental human rights. Preserving human dignity is an essential aspect of nursing practice and a central element of care. Dignity is a highly subjective and personal concept; there may be variations in the way that patients perceive it and in the ways that nurses can guarantee it. (...) A systematic review of the qualitative literature was conducted to obtain a comprehensive understanding of adult patients’ perceptions of dignity in a hospital setting. This review adhered to the PRISMA Statement for reporting systematic reviews, and the results were reported in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Major databases (PubMed, CINAHL, Scopus, and PsycINFO) were consulted and resulted in the inclusion of 21 studies. Methodological quality was assessed using the Critical Appraisal Skills Program (CASP) Checklist for Qualitative Studies. Six main themes emerged from the data analysis: (1) The concept of dignity and its various dimensions; (2) The significance of maintaining one’s own privacy and confidentiality; (3) The hospital environment’s influence on patients’ dignity; (4) Healthcare professionals’ characteristics and behaviours that affect dignity; (5) The role of communication and the relationship with healthcare providers; and (6) The patient’s ability to make choices and be involved actively in their care. These findings underscore the importance of understanding caregivers’ perspectives on dignity to ensure that they provide respectful and dignified care and treatment that prioritizes the patient’s mental and physical needs. (shrink)

BackgroundRespecting patients’ confidentiality is an ethical and legal responsibility for health professionals and the cornerstone of care excellence. This study aims to assess health professionals’ knowledge, attitudes, and associated factors towards patients’ confidentiality in a resource-limited setting.MethodsInstitutional based cross-sectional study was conducted among 423 health professionals. Stratified sampling methods were used to select the participants, and a structured self-administer questionnaire was used for data collection. The data was entered using Epi-data version 4.6 and analyzed using (...) SPSS, version 25. Bi-variable and multivariable binary logistic regression analyses were used to measure the association between the dependent and independent variables. Odds ratio with 95% confidence intervals and P value was calculated to determine the strength of association and to evaluate statistical significance.ResultOut of 410 participants, about 59.8% with [95% CI (54.8–68.8%)] and 49.5% with [95% CI (44.5–54.5%)] had good knowledge and favorable attitude towards patents confidentiality respectively. Being male (AOR = 1.63, 95% CI [1.03–2.59]), taking training on medical ethics (AOR = 1.73, 95% CI = [1.11–2.70]), facing ethical dilemmas (AOR = 3.07, 95% CI [1.07–8.79]) were significantly associated factors for health professional knowledge towards patients’ confidentiality. Likewise, taking training on medical ethics (AOR = 2.30, 95% CI [1.42–3.72]), having direct contact with the patients (AOR = 3.06, 95% CI [1.12–8.34]), visiting more patient (AOR = 4.38, 95% CI [2.46–7.80]), and facing ethical dilemma (AOR = 3.56, 95% CI [1.23–10.26]) were significant factors associated with attitude of health professionals towards patient confidentiality.ConclusionThe findings of this study revealed that health professionals have a limited attitude towards patient confidentiality but have relatively good knowledge. Providing a continuing medical ethics training package for health workers before joining the hospital and in between the working time could be recommended to enhance health professionals’ knowledge and attitude towards patient confidentiality. (shrink)

Background: Compassion is the core of nursing care and the basis of ethical codes. Due to the complex and abstract nature of this concept, there is a need for further investigations to explore the meaning and identify compassionate nursing care. Objectives: The purpose of this study was to identify and describe compassionate nursing care based on the experiences of nurses, patients, and family caregivers. Research design: This was a qualitative exploratory study. Data were analyzed using the conventional content analysis (...) method. Participants and research context: Nurses, hospitalized patients, and family caregivers in different educational hospitals in an urban area of Iran were selected from February 2016 to December 2017 using a purposeful sampling method. In-depth and semi-structured interviews, focus group interviews, and field notes were used for data collection. Ethical considerations: The study was approved by the University’s Ethics Committee. The participants were informed about the aim and method of the study, reasons for recording the interviews, confidentiality of data, and voluntary nature of participation in this study. Findings: Data from interviews and filed notes were analyzed and classified into three themes: “effective interaction,” “professionalism,” and “continuous comprehensive care.” Discussion and conclusion: Emerged themes of this study involved holistic care in the current literature on nursing with an emphasis on effective interaction and professionalism. Nurses can understand patients’ and family caregivers’ comprehensive needs through interaction skills. In addition, clinical proficiency, maintaining professional ethics’ standards along with holism, and continuity in care are examples of compassionate care. Education program about compassionate care can enhance the quality of nursing care. (shrink)

Dheensa S, Fenwick A, Lucassen A.‘Is this knowledge mine ….

KEY POINTS In Canada, commercial data brokers collect deidentified patient data from pharmacies, private drug insurers, the federal government and medical clinics without patient consent. Although pharmaceutical companies are the data brokers’ primary customers, academics and nonprofit and public entities also use commercial data sets, given the absence of a coordinated public approach to collecting these data across Canada. Risks of commercialized patient data include loss of anonymity, surveillance and marketing, discrimination (...) and violation of Indigenous data sovereignty. Coordinated infrastructure for the collection and coordination of health data across Canada and updated privacy legislation would protect individuals and communities and enable appropriate data uses. (shrink)

Patient portals are poised to transform health communication by empowering patients with rapid access to their own health data. The 21st Century Cures Act is a US federal law that, among other provisions, prevents health entities from engaging in practices that disrupt the exchange of electronic health information—a measure that may increase the usage of patient health portals. Caregiver access to patient portals, however, may lead to breaches in patient privacy and confidentiality if not (...) managed properly through proxy accounts. We present an ethical framework that guides policy and clinical workflow development for healthcare institutions to support the best use of patient portals. Caregivers are vital members of the care team and should be supported through novel forms of health information technology (IT). Patients, however, may not want all information to be shared with their proxies so healthcare institutions must support the development and use of separate proxy accounts as opposed to using the patient’s own account as well provide controls for limiting the scope of information displayed in the proxy accounts. Lastly, as socioeconomic barriers to adoption of health IT persist, healthcare providers must work to ensure multiple streams of patient communication, to prevent further propagating health inequities. (shrink)

BackgroundRespect for confidentiality is important to safeguard the well-being of patients and ensure the confidence of society in the doctor-patient relationship. The aim of our study is to examine real situations in which there has been a breach of confidentiality, by means of direct observation in clinical practice.MethodsBy means of direct observation, our study examines real situations in which there has been a breach of confidentiality in a tertiary hospital. To observe and collect data on (...) these situations, we recruited students enrolled in the Medical Degree Program at the University of Cordoba. The observers recorded their entries on standardized templates during clinical internships in different departments: Internal Medicine; Gynecology and Obstetrics; Pediatrics; Emergency Medicine; General and Digestive Surgery; Maxillofacial Surgery; Plastic Surgery; Orthopedics and Traumatology; Digestive; Dermatology; Rheumatology; Mental Health; Nephrology; Pneumology; Neurology; and Ophthalmology.ResultsFollowing 7138 days and 33157 h of observation, we found an estimated Frequency Index of one breach per 62.5 h. As regards the typology of the observed breaches, the most frequent were related to the consultation and/or disclosure of clinical and/or personal data to medical personnel not involved in the patient’s clinical care, as well as people external to the hospital. As regards their severity, severe breaches were the most frequent, accounting for 46.7 % of all incidents. Most of the reported incidents were observed in public areas, such as corridors, elevators, the cafeteria, stairs, and locker rooms.ConclusionsIn addition to aspects related to hospital organization or infrastructure, we have shown that all healthcare personnel are involved in confidentiality breaches, especially physicians. While most are committed unintentionally, a non-negligible number are severe, repeated breaches, thus suggesting a certain carelessness, perhaps through ignorance about certain behaviors that can jeopardize patient confidentiality. (shrink)

The legal requirements and justifications for collecting patient-identifiable data without patient consent were examined. The impetus for this arose from legal and ethical issues raised during the development of a population-based disease register. Numerous commentaries and case studies have been discussing the impact of the Data Protection Act 1998 and Caldicott principles of good practice on the uses of personal data. But uncertainty still remains about the legal requirements for processing patient-identifiable data without (...) patient consent for research purposes. This is largely owing to ignorance, or misunderstandings of the implications of the common law duty of confidentiality and section 60 of the Health and Social Care Act 2001. The common law duty of confidentiality states that patient-identifiable data should not be provided to third parties, regardless of compliance with the DPA1998. It is an obligation derived from case law, and is open to interpretation. Compliance with section 60 ensures that collection of patient-identifiable data without patient consent is lawful despite the duty of confidentiality. Fears regarding the duty of confidentiality have resulted in a common misconception that section 60 must be complied with. Although this is not the case, section 60 support does provide the most secure basis in law for collecting such data. Using our own experience in developing a disease register as a backdrop, this article will clarify the procedures, risks and potential costs of applying for section 60 support. (shrink)

Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be (...) openly stated in informed consent documents or be implicit in the norms of confidentiality that govern the relationships of patients and healthcare professionals. However, with medicine becoming a data-intense enterprise, informed consent and medical confidentiality, as mechanisms of control, are put under pressure. In this paper we explore emerging models of informational control in data-intense healthcare and clinical research, which can compensate for the limitations of currently available instruments. More specifically, we discuss three approaches that hold promise in increasing individual control: the emergence of data portability rights as means to control data access, new mechanisms of informed consent as tools to control data use, and finally, new participatory governance schemes that allow individuals to control their data through direct involvement in data governance. We conclude by suggesting that, despite the impression that biomedical big data diminish individual control, the synergistic effect of new data management models can in fact improve it. (shrink)

Background Only a few studies have been conducted to assess physicians’ knowledge of legal standards. Nevertheless, prior research has demonstrated a dearth of medical law knowledge. Our study explored physicians’ awareness of legal provisions concerning informed consent and confidentiality, which are essential components of the physician-patient relationship of trust. -/- Methods A cross-sectional study assessed attending physicians’ legal knowledge of informed consent and confidentiality regulations. The study was conducted in nine hospitals in Dolj County, Romania. Physicians were (...) given a questionnaire with ten scenarios and instructed to select the response that best reflected their practice. We assessed the responses of physicians who claimed their practice to be entirely legal. Their legal knowledge was evaluated by comparing their answers to applicable laws. We also calculated a score for the physicians who admitted to committing a legal breach. -/- Results Of the 305 respondents, 275 declared they never committed any law violation. However, their median correct answer score was 5.35 ± 1.66 out of 10. The specialty was the strongest predictor of legal knowledge, with emergency physicians rating the lowest and non-surgical physicians scoring the highest. Physicians who worked in both private and public sectors were better knowledgeable about legal issues than those who worked exclusively in the public sector. Results indicate that physicians are aware of the patient’s right to informed consent but lack comprehensive understanding. While most physicians correctly answered simple questions, only a tiny minority identified the correct solution when confronted with ethical dilemmas. The physicians who acknowledged breaching the law, on the other hand, had a slightly higher knowledge score at 5.45 ± 2.18. -/- Conclusion Legal compliance remains relatively low due to insufficient legal awareness. Physicians display limited awareness of legal requirements governing patient autonomy, confidentiality, and access to health data. Law should be taught in all medical schools, including undergraduate programs, to increase physicians’ legal knowledge and compliance. (shrink)

Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and (...) inform ethical and privacy debates. Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis. Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data. Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data. (shrink)

Use of patient clinical photographs requires specific attention to confidentiality and privacy. Although there are policies and procedures for publishing clinical images, there is little systematic evidence about what patients and health professionals actually think about consent for publishing clinical images. We investigated the opinions of three stakeholder groups at 3 academic healthcare institutions and 37 private practices in Croatia. The questionnaire contained patient photographs with different levels of anonymization. All three respondent groups considered that more stringent (...) forms of permission for were needed identifiable photographs than for those with higher levels of anonymization. When the entire face was presented in a photo only 33% of patients considered that written permission was required, compared with 88% of the students and 89% of the doctors. Opinions about publishing patient photographs differed among the three respondent samples: almost half of the patients thought no permission was necessary compared with one-third of students and doctors. These results show poor awareness of Croatian patients regarding the importance of written informed consent as well as unsatisfactory knowledge of health professionals about policies on the publication of patients’ data in general. In conclusion, there is a need for increasing awareness of all stakeholders to achieve better protection of patient privacy rights in research and publication. (shrink)

There is robust scientific evidence from meta-analyses in psychotherapy research that common factors such as the alliance between patients and therapists, empathy, goal consensus/collaboration, positive regard/affirmation and genuineness have a much greater effect on the overall psychotherapy outcome than the so-called specific factors like particular treatment methods or ingredients of therapy.1 The current evidence base also suggests that the effects of telepsychiatric treatment are comparable with those of face-to-face treatment, not only regarding clinical outcome parameters but also with respect to (...) patient satisfaction, acceptance and adherence—all common factors of psychotherapy.2 According to a comprehensive review of the main ethical arguments for and against different forms of online psychotherapy, the online setting provides several weighty advantages: for example, increased access, availability, flexibility, convenience, satisfaction, acceptance and increased demand.3 Among the arguments against online psychotherapy, privacy, confidentiality and data security issues, emergency issues, as well as communication issues have been mentioned.3 Frittgen and Haltaufderheide 4 are concerned that telepsychiatry could ‘impact ethically relevant aspects of the therapeutic relationship’. They conclude that ‘there is evidence for ethically relevant changes of the therapeutic relationship in video-based telepsychiatric consultations’,4 particularly pertaining to ‘respect for autonomy, lucidity, fidelity, justice and humanity towards each other’.4 Indeed, video-based consultations as technically mediated communication ‘do not only transmit but transform what can be perceived, …. (shrink)

In the article Privacy and Health Practices in the Digital Age, the authors describe current privacy challenges for digital health data and review the theoretical framework on privacy in the contex...

Ethical problems are related to computer data bases, containing data on individuals and groups of persons, as well as to computer knowledge bases, containing general rules and elements of expert systems.In the present essay the following conclusions are made regarding computer data bases: privacy, security, and confidentiality of medical computer data bases should be ensured. This duty should rest with physicians in hospitals. The principle of informed consent should be applied to gathering information which is (...) to be stored and processed by computers. Information stored in computer data bases should not be used for purposes for which the subjects (patients as well as personnel) have not given their consent. In order to decrease the possibility of misuses of medical data bases containing information on individuals, these registers should not be linked to other central data bases. (shrink)

The purpose of this study was to determine the opinions and expectations of patients and nurses about privacy during a hospital admission for surgery. The study explored what enables and maintains privacy from the perspective of Turkish surgical patients and nurses. The study included 102 adult patients having surgery and 47 nurses caring for them. Data were collected via semistructured questionnaire by face-to-face interviews. The results showed that patients were mostly satisfied by the respect shown to their privacy by (...) the nurses but were less confident of the confidentiality of their personal data. It was found that patients have expectations regarding nursing approaches and attitudes about acknowledging and respecting patient autonomy and confidentiality. It is remarkable that while nurses focused on the physical dimension of privacy, patients focused on informational and psychosocial dimensions of privacy, as well as its physical dimension. (shrink)

Introduction to, and overview of, the contents of the Symposium on consent and confidentialityThe papers in this symposium are based on a meeting held by the Academy of Medical Sciences in London on 12 February 2002. The decision to hold this meeting, and to explore in detail these important and contentious issues, arose from a number of concerns that the Academy felt about what may reasonably be called “impediments to medical research”.These include: The regulations arising from the implementation of the (...) European data protection directive and their effect on the gathering and holding of data needed for disease surveillance as well as for research. Phil Boyd, in his paper, presents the views and the work of the Information Commission, the responsible UK body in this area. The “Source Informatics” case where the Department of Health requested a judicial review on the use, by this company, of anonymised prescribing data from general practitioner records for informing the pharmaceutical industry about patterns of drug use. Mr Justice Latham ruled that the use of even this anonymised data for commercial purposes could be a breach of patients' rights to confidentiality. The Court of Appeal, however, emphatically reversed his decision and, no further appeal having been made to the House of Lords, the law of the land is now clear that there is no breach of confidentiality in the use of anonymised data. It did seem to us, …. (shrink)

Background Big data and AI applications now play a major role in many health contexts. Much research has already been conducted on ethical and social challenges associated with these technologies. Likewise, there are already some studies that investigate empirically which values and attitudes play a role in connection with their design and implementation. What is still in its infancy, however, is the comparative investigation of the perspectives of different stakeholders. Methods To explore this issue in a multi-faceted manner, we (...) conducted semi-structured interviews as well as focus group discussions with patients and clinicians. These empirical methods were used to gather interviewee’s views on the opportunities and challenges of medical AI and other data-intensive applications. Results Different clinician and patient groups are exposed to medical AI to differing degrees. Interviewees expect and demand that the purposes of data processing accord with patient preferences, and that data are put to effective use to generate social value. One central result is the shared tendency of clinicians and patients to maintain individualistic ascriptions of responsibility for clinical outcomes. Conclusions Medical AI and the proliferation of data with import for health-related inferences shape and partially reconfigure stakeholder expectations of how these technologies relate to the decision-making of human agents. Intuitions about individual responsibility for clinical outcomes could eventually be disrupted by the increasing sophistication of data-intensive and AI-driven clinical tools. Besides individual responsibility, systemic governance will be key to promote alignment with stakeholder expectations in AI-driven and data-intensive health settings. (shrink)

The dissemination of information about patients through computers and multidisciplinary teams involves departures from traditional tenets of confidentiality. This raises ethical problems, exemplified by current practices in child health. In multidisciplinary teams, problems may arise because different professions utilise different types of data. Some team members may not appreciate the extent to which data may be unscientific and judgmental. Children and thier families may be labelled, without justification, preventing objective reappraisal. The ethical and legal implications are considered. (...) Practice may not conform to principles of natural justice, for example when care orders are sought. Obligations to the State may also imperil the confidentiality of the doctor-patient relationship, and of medical records, the legal status of which is confused and requires clarification. Allowing patients access to their records could be a useful safeguard, and the medical profession should devise alternatives should it not be accepted. (shrink)

In the nearly 40 years since implementation of federal regulations governing the protection of human participants in research, the number of clinical studies has grown exponentially. These studies have become more complex, with multisite trials now common, and there is increasing use of archived biospecimens and related data, including genomics data. In addition, growing emphasis on targeted cancer therapies requires greater collaboration and sharing of research data to ensure that rare patient subsets are adequately represented. Electronic (...) records enable more extensive data collection and mining, but also raise concerns about the potential for inappropriate or unauthorized use of data, bringing patient protections into a new landscape. There are also long-standing concerns about the processes and forms used to obtain informed consent from patients participating in clinical studies. These changes and challenges raise new ethical and practical questions for the oversight of clinical studies, and for protecting patients and their health information in an efficient manner that does not compromise the progress of biomedical research. Contemporary Issues for Protecting Patients in Cancer Research is the summary of a workshop convened by the National Cancer Policy Forum of the Institute of Medicine in February 2014 to explore contemporary issues in human subjects protections as they pertain to cancer research, with the goal of identifying potential relevant policy actions. Clinical researchers, government officials, members of Institutional Review Boards, and patient advocates met to discuss clinical cancer research and oversight. This report examines current regulatory provisions that may not adequately protect patients or may be hindering research, and discusses potential strategies and actions to address those challenges. (shrink)

The sense of shame is part of human nature. What, then, is the role and significance of such a particular sensation, one that causes mental anxiety in a sick person’s weakest and the most vulnerable state? We know from historical documents going back as far as ancient Greece and Egypt that respecting patient privacy should be regarded as a moral duty for physicians in charge of treatment. However much today’s healthcare may have changed compared to centuries past, we note (...) that patient privacy has not lost its importance. In the current healthcare system, digital recording of private information and images enables others, in principle, to access these personal data quite easily. While we cannot reject the advantages offered by modern medicine, we need to consider how to design a healthcare system that respects patient privacy. What should be the standards of privacy in emergency services where urgent decisions and interventions have to be made? How should we guarantee patient privacy during medical education? The chapters of this book approach questions like these from the perspectives of different disciplines. The writings illustrate the increasing complexity of patient privacy issues in modern healthcare systems, particularly the growing difficulty to protect confidential data. At the same time, we can observe that patients are becoming more aware of their rights and their sensitivity in this area has increased. In our opinion, an approach that requires us to choose between the two values –health and privacy – would be wrong. Therefore, the question we should focus on is: “what kind of healthcare system should be developed to ensure the greatest respect for humans’ natural right to privacy?” If we want to answer this question and find sustainable solutions for these problems, it is crucial to use a multidisciplinary approach. From this perspective, the present volume is a first contribution to be published in Turkey to pursue this aim, including articles offered from various disciplines. (shrink)

Web 2.0 innovations may enhance informed patient decision-making, but also raise ethical concerns about inaccurate or misleading information, damage to the doctor-patient relationship, privacy and confidentiality, and health disparities. To increase the benefits and decrease the risks of these innovations, we recommend steps to help patients assess the quality of health information on the Internet; promote constructive doctor-patient communication about new information technologies; and set standards for privacy and data security in patient-controlled health records (...) and for point-of-service advertising. (shrink)

Background: It is stated that the communication and disease experiences of paediatric patients, especially paediatric oncology patients, with healthcare professionals are completely different from those of adults. Objective: The aim of this study was to determine the definitions of a good physician and good nurse provided by elementary school-age oncology patients. Research design: In this qualitative research, data were collected through semi-structured individual interviews. The data were evaluated thorough thematic analysis. Participants and research context: Eighteen children hospitalised due (...) to cancer in paediatric oncology and haematology clinics of a university hospital in Turkey. Ethical considerations: Permission to conduct the study was obtained from the Institution’s Ethics Committee. The objectives of this study were explained to the participants and families, and written consent was obtained from them. Also, participants were assured that necessary measures would be taken to protect their anonymity and confidentiality. Findings: The definitions of children were based on five main themes: interpersonal relationships, virtues, professional responsibility, security and individual characteristics. Conclusion: Children conveyed important messages to health professionals. They emphasised that a good physician and good nurse should communicate well, not only with themselves but also with their family. In addition, children were sensitive about health professionals who played with them and actively participated in the treatment by informing them about the disease. Meeting the expectations of children can be possible by improving the communication skills of physicians and nurses and by adding games and activities to the treatment and care plan. (shrink)

Professor Vuori's paper, first presented at the fourth Medico-legal Conference in Prague in the spring of this year, deals with the problem of the maintenance of confidentiality in computerized health records. Although more and more information is required, the hardware of the computer systems is so sophisticated that it would be very expensive indeed to 'break in' and steal from a modern data bank. Those concerned with programming computers are becoming more aware of their responsibilities concerning confidentiality (...) and privacy, to the extent that a legal code of ethics for programmers is being formulated. They are also aware that the most sensitive of all relationships--the doctor-patient relationship--could be in danger if they failed to maintain high standards of integrity. An area of danger is where administrative boundaries between systems must be crossed--say between those of health and employment. Protection of privacy must be ensured by releasing full information about the type of data being stored, and by maintaining democratic control over the establishment of information systems. (shrink)

As the General Medical Council (GMC) is currently in the process of reviewing its ethical guidance on confidentiality, it is a prescient time to consider the legal and ethical issues inherent in it. This paper examines the question of anonymized data, and highlights the fact that the legal position regarding whether it should be classed as confidential is unclear, with the possibility of a change in the law being very real. Indeed, the article argues that the notion that (...) anonymized data is not confidential can be challenged on both legal and ethical grounds, and thus that the GMC should take this into account in its new guidance. Although identifying the fact that this might have implications for epidemiological research, the article highlights an alternative approach that would allow the conduct of such research while not infringing patients' legally protected human rights. (shrink)

Background Protecting a person’s right to privacy and confidentiality is important in healthcare services. As future health professionals, nursing students should bear the same responsibility as qualified health professionals in protecting patient privacy. Objectives To investigate nursing students’ practices of patient privacy protection and to identify factors associated with their practices. Research design A cross-sectional study design was adopted. A two-part survey was used to collect two types of data on nursing students: (1) personal characteristics, including (...) demographics, clinical experience and use of information and communication technology and social media and (2) practice of patient privacy protection, collected using the Patient Privacy Scale. Participants and research context: A total of 319 nursing students aged 18 or above, studying pre-registration nursing programmes and who had attended at least one block of clinical placement, were recruited from a university in Hong Kong. Ethical considerations The study received ethical approval from the Survey and Behavioural Research Ethics Committee of the Chinese University of Hong Kong. The participants were informed of the study aim and written consent was obtained before completing the survey. Findings: The mean total score on the Patient Privacy Scale was 119.7 out of 135. Nursing students who were regular users of Instagram and those who had never taken photographs with patients and hence did not need to obtain patient consent were associated with better practices of patient privacy protection (higher total scores on the Patient Privacy Scale). Conclusions The findings improve our understanding of nursing students’ practice of patient privacy protection and the associated factors. This will inform the development and revision of current strategies to enhance nursing students’ practice of patient privacy protection, especially their use of social media. (shrink)

Digital communication between a patient and their clinician offers the potential for improved patient care, particularly for young people with long term conditions who are at risk of service disengagement. However, its use raises a number of ethical questions which have not been explored in empirical studies. The objective of this study was to examine, from the patient and clinician perspective, the ethical implications of the use of digital clinical communication in the context of young people living (...) with long-term conditions. A total of 129 semi-structured interviews, 59 with young people and 70 with healthcare professionals, from 20 United Kingdom -based specialist clinics were conducted as part of the LYNC study. Transcripts from five sites were read by a core team to identify explicit and implicit ethical issues and develop descriptive ethical codes. Our subsequent thematic analysis was developed iteratively with reference to professional and ethical norms. Clinician participants saw digital clinical communication as potentially increasing patient empowerment and autonomy; improving trust between patient and healthcare professional; and reducing harm because of rapid access to clinical advice. However, they also described ethical challenges, including: difficulty with defining and maintaining boundaries of confidentiality; uncertainty regarding the level of consent required; and blurring of the limits of a clinician’s duty of care when unlimited access is possible. Paradoxically, the use of digital clinical communication can create dependence rather than promote autonomy in some patients. Patient participants varied in their understanding of, and concern about, confidentiality in the context of digital communication. An overarching theme emerging from the data was a shifting of the boundaries of the patient-clinician relationship and the professional duty of care in the context of use of clinical digital communication. The ethical implications of clinical digital communication are complex and go beyond concerns about confidentiality and consent. Any development of this form of communication should consider its impact on the patient-clinician-relationship, and include appropriate safeguards to ensure that professional ethical obligations are adhered to. (shrink)

BackgroundWhile most studies on HIV/AIDS often identify stigmatization and patients’ unwillingness to access health care as critical problems in the control of the pandemic, very few studies have focused on the possible consequences of accessing health care by sero-positives. This paper examines the socio-psychological trauma patients experience in their desire to access health care in two health facilities in the Ashanti Region of Ghana.MethodsThrough participant observation, informal conversation and in-depth interviews, data were collected from health workers and clients of (...) the voluntary counselling and antiretroviral therapy units in the two hospitals.The data gathered were analysed and categorized into themes and supported with illustrative quotes obtained from health workers and clients.ResultsThe study found that the mere presence of a person at the HIV counselling centre or clinic is enough for the person to be labelled as or suspected to be HIV patient. It demonstrates that stigmatization may occur not only in the community but also overtly or covertly, in the health facility itself. Consequently, for many HIV/AIDS patients, access to antiretroviral therapy and treatment of related nosocomial infections are problematic. Besides, the study found that many clients and potential users of services were uncomfortable with the quality of care given by some health workers, especially as they overtly and covertly breached confidentiality about their clients’ health status. This has compelled many patients and potential users of the services to adopt a modus vivendi that provides them access to some care services while protecting their identity.ConclusionThe paper argues that by examining issues relating to privacy and confidentiality in the provision of care for and use of services by seropositives, more light will be shed on the whys of the limited uptake of HIV-related health care services in Ghana. (shrink)

In Nazi Germany, approximately 200 000 mentally ill people were murdered under the guise of euthanasia. Relatively little is known regarding the fate of the Jewish mentally ill patients targeted in this process, long before the Holocaust officially began. For the Nazis, Jewish mentally ill patients were doubly cursed since they embodied both “precarious genes” and “racial toxin”. To preserve the memory of the victims, Yad Vashem, the leading institution dedicated to documentation of the Holocaust, actively collects information and documents (...) the fate of victims in an open online database. Recently, a list of approximately 1200 names of Jewish mentally ill euthanasia victims has been compiled from hospital archives. Their fate remains unknown to surviving family members. Given the duty to preserve medical confidentiality, can this list be publicised for public interest and for notifying families—publicising names and death circumstances, including where “killed” would immediately indicate that the person had had a mental illness? Does the right to medical confidentiality lapse upon death? Is time elapsed since death a factor? Can opposing obligations of preserving victims’ memory over-ride medical confidentiality? What if a family member objects to a grandparent’s name being exposed on the list of mentally ill patients? This article considers these issues as well as the “rational” and “non-rational” factors in ethical decisional making surrounding this unique dilemma. Several possible solutions are proposed including preserving the list in a locked database for access by families and researchers, publicising in the media that such a list exists, publishing the information online without any identifiers and submitting the information to historians, allowing them to process the data as they see fit. (shrink)

Organizations often release and receive medical data with all explicit identifiers, such as name, address, telephone number, and Social Security number, removed on the assumption that patient confidentiality is maintained because the resulting data look anonymous. However, in most of these cases, the remaining data can be used to reidenafy individuals by linking or matching the data to other data bases or by looking at unique characteristics found in the fields and records of (...) the data base itself. When these less apparent aspects are taken into account, each released record can map to many possible people, providing a level of anonymity that the recordholder determines. The greater the number of candidates per record, the more anonymous the data.I examine three general-purpose computer programs for maintaining patient confidentiality when disclosing electronic medical records: the Scrub System, which locates and suppresses or replaces personally identifying information in letters between doctors and in notes written by clinicians; the Datafly System, which generalizes values based on a profile of the data recipient at the time of disclosure; and the μ-Argus System, a somewhat similar system which is becoming a European standard for disclosing public use data. (shrink)