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Competing Interests: Competing interests: Sheryl Spithoff reports grants from the Social Sciences and Humanities Research Council of Canada, the College of Family Physicians of Canada and the Privacy Commissioner of Canada, outside the submitted work. She is also chair of the UTOPIAN working group on relationships with industry. Nav Persaud is a member of the Canadian Task Force on Preventative Health Care and an advisor to the pan-Canadian Advisory Panel on a Framework for a Prescription Drug List. No other competing interests were declared.

Objective: To create practical recommendations for the curation of routinely collected health data and artificial intelligence (AI) in primary care with a focus on ensuring their ethical use., Methods: We defined data curation as the process of management of data throughout its lifecycle to ensure it can be used into the future. We used a literature review and Delphi exercises to capture insights from the Primary Care Informatics Working Group (PCIWG) of the International Medical Informatics Association (IMIA)., Results: We created six recommendations: (1) Ensure consent and formal process to govern access and sharing throughout the data life cycle; (2) Sustainable data creation/collection requires trust and permission; (3) Pay attention to Extract-Transform-Load (ETL) processes as they may have unrecognised risks; (4) Integrate data governance and data quality management to support clinical practice in integrated care systems; (5) Recognise the need for new processes to address the ethical issues arising from AI in primary care; (6) Apply an ethical framework mapped to the data life cycle, including an assessment of data quality to achieve effective data curation., Conclusions: The ethical use of data needs to be integrated within the curation process, hence running throughout the data lifecycle. Current information systems may not fully detect the risks associated with ETL and AI; they need careful scrutiny. With distributed integrated care systems where data are often used remote from documentation, harmonised data quality assessment, management, and governance is important. These recommendations should help maintain trust and connectedness in contemporary information systems and planned developments., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)

To accelerate the adoption of a new method with a high potential to replace or extend an existing, presumably less accurate, medical scoring system, evaluation should begin days after the new concept is presented publicly, not years or even decades later. Metaphorically speaking, as chameleons capable of quickly changing colors to help their bodies adjust to changes in temperature or light, health-care decision makers should be capable of more quickly evaluating new data-driven insights and tools and should integrate the highest performing ones into national and international care systems. Doing so is essential, because it will truly save the lives of many individuals.

Socially desirable outcomes within healthcare IT depend not only on the ethical behavior of individuals, but also on the actions and policies of large corporations. It is therefore important to have public accountability mechanisms that can be applied to corporations. The Sustainability Accounting Standards Board (SASB) publishes standards for assessing corporate transparency around ethical issues of broad public interest. The SASB standards and methodology were used to assess disclosures in the annual shareholder reports and websites of the top EHR vendors. The results showed a very low rate of meaningful disclosure.

Cloud computing is rapidly gaining traction in business. It offers businesses online services on demand (such as Gmail, iCloud and Salesforce) and allows them to cut costs on hardware and IT support. This is the first paper in business ethics dealing with this new technology. It analyzes the informational duties of hosting companies that own and operate cloud computing datacentres (e.g., Amazon). It considers the cloud services providers leasing 'space in the cloud' from hosting companies (e.g., Dropbox, Salesforce). And it examines the business and private 'clouders' using these services. The first part of the paper argues that hosting companies, services providers and clouders have mutual informational (epistemic) obligations to provide and seek information about relevant issues such as consumer privacy, reliability of services, data mining and data ownership. The concept of interlucency is developed as an epistemic virtue governing ethically effective communication. The second part considers potential forms of government restrictions on or proscriptions against the development and use of cloud computing technology. Referring to the concept of technology neutrality, it argues that interference with hosting companies and cloud services providers is hardly ever necessary or justified. It is argued, too, however, that businesses using cloud services (e.g., banks, law firms, hospitals etc. storing client data in the cloud) will have to follow rather more stringent regulations.

Sharing health and social care data is essential to the delivery of high quality health care as well as disease surveillance, public health, and for conducting research. However, these societal benefits may be constrained by privacy and data protection principles. Hence, societies are striving to find a balance between the two competing public interests. Whilst the spread of IT advancements in recent decades has increased the demand for an increased privacy and data protection in many ways health is a special case. UK are adopting guidelines, codes of conduct and regulatory instruments aimed to implement privacy principles into practical settings and enhance public trust. Accordingly, in 2015, the UK National Data Guardian (NDG) requested to conduct a further review of data protection, referred to as Caldicott 3.  The scope of this review is to strengthen data security standards and confidentiality. It also proposes a consent system based on an "opt-out" model rather than on "opt-in.Across Europe as well as internationally the privacy-health data sharing balance is not fixed.  In Europe enactment of the new EU Data Protection Regulation in 2016 constitute a major breakthrough, which is likely to have a profound effect on European countries and beyond.  In Australia and across North America different ways are being sought to balance out these twin requirements of a modern society - to preserve privacy alongside affording high quality health care for an ageing population.  Whilst in the UK privacy legal framework remains complex and fragmented into different layers of legislation, which may negatively impact on both the rights to privacy and health the UK is at the forefront in the uptake of international and EU privacy and data protection principles. And, if the privacy regime were reorganised in a more comprehensive manner, it could be used as a sound implementation model for other countries.

Background: Privacy, ethics, and data access issues pose significant challenges to the timely delivery of health research. Whilst the fundamental drivers to ensure that data access is ethical and satisfies privacy requirements are similar, they are often dealt with in varying ways by different approval processes., Objective: To achieve a consensus across an international panel of health care and informatics professionals on an integrated set of privacy and ethics principles that could accelerate health data access in data-driven health research projects., Method: A three-round consensus development process was used. In round one, we developed a baseline framework for privacy, ethics, and data access based on a review of existing literature in the health, informatics, and policy domains. This was further developed using a two-round Delphi consensus building process involving 20 experts who were members of the International Medical Informatics Association (IMIA) and European Federation of Medical Informatics (EFMI) Primary Health Care Informatics Working Groups. To achieve consensus we required an extended Delphi process., Results: The first round involved feedback on and development of the baseline framework. This consisted of four components: (1) ethical principles, (2) ethical guidance questions, (3) privacy and data access principles, and (4) privacy and data access guidance questions. Round two developed consensus in key areas of the revised framework, allowing the building of a newly, more detailed and descriptive framework. In the final round panel experts expressed their opinions, either as agreements or disagreements, on the ethics and privacy statements of the framework finding some of the previous round disagreements to be surprising in view of established ethical principles., Conclusion: This study develops a framework for an integrated approach to ethics and privacy. Privacy breech risk should not be considered in isolation but instead balanced by potential ethical benefit.

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was recently adopted by a team of informaticists who are designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and nonmaleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper, we show how using ethical principles can help in the design of EHRs by first explaining how ethical principles can and should be used generally, and then by discussing how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest.

Information security can be of high moral value. It can equally be used for immoral purposes and have undesirable consequences. In this paper we suggest that critical theory can facilitate a better understanding of possible ethical issues and can provide support when finding ways of addressing them. The paper argues that critical theory has intrinsic links to ethics and that it is possible to identify concepts frequently used in critical theory to pinpoint ethical concerns. Using the example of UK electronic medical records the paper demonstrates that a critical lens can highlight issues that traditional ethical theories tend to overlook. These are often linked to collective issues such as social and organisational structures, which philosophical ethics with its typical focus on the individual does not tend to emphasise. The paper suggests that this insight can help in developing ways of researching and innovating responsibly in the area of information security.

This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is to shed light on the tension between secrecy and transparency in the digital era. A special focus is put from the perspectives of psychology, medical ethics and European law on the contradiction between individuals' motivations for consented processing of personal data and their fears about unknown disclosure, transferal and sharing of personal data via information and communication technologies (named the "privacy paradox"). Potential benefits and harms for the individual and society resulting from the use of computers, mobile phones, the Internet and social media are being discussed. Furthermore, the authors point out the ethical and legal limitations inherent to the processing of personal data in a democratic society governed by the rule of law. Finally, they seek to demonstrate that the impact of information and communication technology use on the individuals' well-being, the latter being closely correlated with a high level of fundamental rights protection in Europe, is a promising feature of the socalled "e-democracy" as a new way to collectively attribute meaning to large-scale online actions, motivations and ideas.

This paper argues that many expanding secondary uses of personal health information are moving beyond legitimate monitoring processes, to become surveillance practices used for purposes of controlling individuals and populations. The paper focuses on the academic discipline of health informatics as a key claim-making site for influencing understandings about uses of personal health information. Using a Foucauldian influenced analysis, it discusses the way discourses shape our attitude to expanding uses of personal health information. It argues that aspirational goals of the discipline discourage critical analyses, creating the potential for the health informatics community to support expanding use of personal information for activities that may result in discrimination, disadvantage.

ICT innovations are constantly developed, and there is no lack of elderly customers, as the number of the elderly is dramatically increasing. Elderly are willing to use ICT to increase their own safety and social activity, but they need trust on the reliability, accessibility and other ethical aspects of ICT including the maintenance of privacy and self-determination. Ethical standards for ICT are usually not considered. "Ethicted" characterizes an ICT service or product as ethically evaluated. As a standardized procedure, it will not only increase the acceptability of ICT, but also provide services for ICT developers. In the future scenario, ICT under development should be evaluated by using a process model that is specifically built to find the lacks in ethical aspects. The model would then be tested by end-users, the formal and informal care givers, to receive direct feedback for redeveloping solutions. As final outcomes, there should be standards for ICT in elderly care and a service for ICT developers to utilize the evaluation model. This future scenario work included partners from 6 EU member countries. The combination of academic research and industrial/commercial interest of ICT developers should and can bring new value to assistive ICT for elderly care.

The introduction of electronic medical record systems (EMRs) into primary care settings alters work practices, introduces new challenges, and new roles. In the process of integrating an EMR into a primary care setting, clinic staff faced ethical challenges in their everyday work practices resulting from workarounds undertaken to compensate for a poor fit between system design and work practices, issues related to system access, and governance gaps. Examples of these issues are presented, and implications for system design are discussed.

Background: Alongside advances in medical information technology (IT), there is mounting physician and patient dissatisfaction with present-day clinical practice. The effect of introducing increasingly complex medical IT on the ethical dimension of the clinical physician's primary task (identified as direct patient care) can be scrutinized through analysis of the EMR software platform., Questions/purposes: We therefore (1) identify IT changes burdensome to the clinician in performing patient care and which therefore lower quality of care; and (2) suggest methods for clinicians to maintain high quality patient care as IT demands increase., Methods: Elemental relationships from information theory and physical chemistry are applied to the profit-generating creation and flow of medical information between patients, physicians, administrators, suppliers, and insurers. Ethical implications for patient care and the doctor-patient relationship are drawn in the light of these relationships. WHERE ARE WE NOW?: Little has been accomplished, or even discussed, regarding limiting healthcare IT growth. Quality of patient care is expected to suffer unless physicians carefully scrutinize, refine and occasionally reject portions of the increasing healthcare IT burden being placed upon them. WHERE DO WE NEED TO GO?: Better medicine, simply understood as more effective prevention and treatment of musculoskeletal disease, is our professional goal. We need to establish mechanisms whereby we can limit, control or even reverse IT changes that hinder this goal. Clinicians must confront the negative impact many healthcare IT changes have on patient care. HOW DO WE GET THERE?: Suggestions for maintaining high standards of practice in the face of the new IT burden include: (1) Increasing IT time-awareness. Clinicians should examine actual time spent in clinical versus computer-based activity and implement changes if that ratio is too high. (2) Increasing IT goal awareness. (3) Examine the software creating a medical record to see how much of what it records is there for financial, as opposed to medical reasons. Is the software helping my patient or someone else's bottom line? Is it for talking to colleagues about sick people or to insurance companies?

The Inforare project aims to set up a system for the sharing of clinical and familial data, in order to study how genes are related to the severity of sickle cell disease. While the computerisation of clinical records represents a valuable research goal, an ethical framework is necessary to guarantee patients' protection and their rights in this developing field. Issues relating to patient information during the Inforare study were analysed by the steering committee. Several major concerns were discussed by the committee and formalized in the patients' information letter: educating patients to aid the recruitment of family members, rules of confidentiality and the disclosure of aggregate, individual and unexpected research results. This paper presents the main issues addressed.

One might argue that beneficence entails a moral obligation for health care providers and systems to adopt electronic medical records (EMR). But this argument is thwarted because EMR systems are currently not required to meet existing standards of care for health care services. Yet using EMR systems may still be prudent if benefits of adoption significantly outweigh burdens. Future moral questions regarding EMR systems will shift from obligations of adoption to that of proper use.

Implementation of guidelines regarding breaches of electronic health information requires an anticipatory stance and physician and patient education regarding security and monitoring measures and methods of redress. Adopting a preventive ethics, rather than a crisis management, model may also increase physician awareness of how the information they choose to include and privilege within the health record may expose patients to added harms if not done mindfully.

Introduction: In the emergency department (ED), clinicians can benefit greatly from having access to information at the point of care. It has been suggested that using computerised information systems could improve the accessibility of information. However, making information accessible, while maintaining confidentiality, is one of the main challenges of implementing information systems. This article presents the ED staff perspectives about the accessibility and confidentiality of information in the ED., Method: The authors undertook a qualitative study in March-April 2007. Data were collected using in-depth semi-structured interviews with the ED staff of an ED located in Northern England. In total, 34 interviews were conducted and transcribed verbatim. Data were analysed using framework analysis., Results: The results showed that the ED staff had role-based access to the current information systems, and these systems met only a small part of their information needs. As a result, different sources were used to get access to the needed information. Although the ED staff believed that improving the accessibility of information could be helpful in emergency care services, there were concerns about the confidentiality of information. The confidentiality of information could be threatened--for example, by sharing passwords, misusing patient information or by unauthorised staff having access to patient information., Conclusion: To design a system, the accessibility and confidentiality of information should be addressed in parallel. A balance between these two is needed, as the failure of each of these may negatively influence the use of the system.

The use of electronic medical record systems raises important ethical concerns about patient privacy and confidentiality, medical errors, expectations of structured data entry by clinicians, documentation integrity, and provider-patient interaction. Clinicians and health care organizations need to define best practices and policies in the use of EMR systems to improve quality and maintain clinician efficiency without compromising patient welfare and safety.

Patients who present repeatedly for care with medically unexplained symptoms raise challenges for the health system. One proposed strategy for dealing with such patients is the introduction of electronic medical records (EMRs) to identify these patients and thus limit the demands on resources their management involves. This measure may ultimately be appropriate but fails to consider equally critical core issues in psychiatric ethics. Identifying patients as "somatisers" invites a problematic relaxation of clinical vigilance, increasing the likelihood that an actual life-threatening medical problem will not be identified. Management of such patients requires regular, structured therapeutic contact with a skilled mental health clinician, that is independent of the patient's distress level. Psychiatric problems and medical problems are frequently seen as two distinct, unrelated categories. This is a false dichotomy, as mental health and physical health are interdependent. Given patient privacy considerations, EMRs would be unlikely to reveal the kind of sensitive mental health information needed for the identification and management of somatising patients in busy health systems. Cost-effective interventions for somatising patients' problematic behaviour, such as structured clinical intervention, antidepressant medication and cognitive behaviour therapy, are available at a fraction of the cost of EMR systems. Citing cost savings as a justification for violating the privacy of mental health patients compounds the manifest injustice these patients already face in the health system.

Purpose of Review: This study reviews the healthcare-related rationale for providing confidential care to adolescents, as well as the legal framework for the provision of such care., Recent Findings: Physician assurances of confidentiality increase adolescents' willingness to disclose sensitive health information, but these assurances are rarely given. Physicians may not be aware of legal minor consent guidelines or may be concerned about parental reaction to such confidential discussions. Fortunately, many parents and teens understand the importance of confidential healthcare. Adolescent consent and confidentiality laws vary from state to state, but there are federal guidelines and common law concepts that are applicable throughout the United States. The Health Insurance Portability and Accountability Act Privacy Rule also provides guidelines for confidential care to minors. Future challenges for adolescent confidentiality include ease of access to electronic medical records as well as patient (and/or parent)-controlled health records., Summary: Confidentiality for adolescents has important implications for the quality provision of healthcare for this vulnerable population. Physicians and other healthcare providers must be aware of these health implications, as well as federal policies, common law, and their individual state's laws pertaining to this important topic.

The practice of psychotherapy gives rise to many ethical dilemmas. In this article we offered a "primer" on the most commonly cited ethical concerns in psychotherapy related to professionalism and therapeutic boundaries and confidentiality. There is no single answer to the varied and complex ethical issues that therapists may encounter in their treatment of patients. Such dilemmas are dynamic, nuanced, complex, and highly context dependent. Although professional codes offer guidance on optimal standards of conduct, they do not always offer clear answers; hence, therapists need to be able to critically evaluate and interpret such codes in relation to their daily practice. The contemporary therapist continues to face new dilemmas in an ever-evolving and dynamic twenty-first-century practice environment. Ethical therapists serve the well-being of their patients above all other interests or commitments. Therapists who are attentive to the professional obligations they possess can adopt several strategies to increase their ethical competence, including constantly evaluating their own attitudes and behaviors in addition to those of their patients, engaging in dialog and developing expertise in relation to ethics issues, having a solid grasp of relevant professional codes of conduct, and demonstrating an openness to consultation with peers and exposure of their work to peer review.

Dedicated primary care research networks aim to gather and analyse data collected from general practioners' (GPs) electronic health records (EHRs). ResoPrim (2003-2008) was a Belgian multidisciplinary research project which was set up to provide recommendations for facilitating the organisation and management of these primary care research networks, assessing and improving opportunities for researchers working with available data from EHRs, and stimulating the involvement of GPs in such networks. This paper provides a short description of Resoprim's global methodology (which included 2 pilot phases involving 64 GPs and 6 different software systems), followed by the project's final recommendations.

The development of biobanks worldwide is considered to hold great promise for the provision of new insights into the connection between genes and environment and to have a positive impact on public health. There is, however, a constant tension between the rights of individuals on one hand and the progress of research on the other hand. One of the rights developed to protect the autonomy and free will of participants and reflecting the basic principles regulating medical research according to the Nuremberg Code and the Declaration of Helsinki is the right to be able to withdraw from the biobank at any time as an expression of the participant's free will and autonomy. There are two important problems to withdrawing, namely the 'what' and 'when'--what can be withdrawn and when can it be withdrawn.

The focus on the use of existing and new technologies to facilitate advances in medical imaging and medical informatics (MIMI) is often directed to the technical capabilities and possibilities that these technologies bring. The technologies, though, in acting as a mediating agent alter the dynamics and context of information delivery in subtle ways. While these changes bring benefits in more efficient information transfer and offer the potential of better healthcare, they also disrupt traditional processes and practices which have been formulated for a different setting. The governance processes that underpin core ethical principles, such as patient confidentiality and informed consent, may no longer be appropriate in a new technological context. Therefore, in addition to discussing new methodologies, techniques and applications, there is need for a discussion of ethical, legal and socio-economic (ELSE) issues surrounding the use and application of technologies in MIMI. Consideration of these issues is especially important for the area of medical informatics which after all exists to support patients, healthcare practitioners and inform science. This paper brings to light some important ethical, legal and socio-economic issues related to MIMI with the aim of furthering an interdisciplinary approach to the increasing use of Information and Communication Technologies (ICT) in healthcare.

Ethical issues related to electronic health records (EHRs) confront health personnel. Electronic health records create conflict among several ethical principals. Electronic health records may represent beneficence because they are alleged to increase access to health care, improve the quality of care and health, and decrease costs. Research, however, has not consistently demonstrated access for disadvantaged persons, the accuracy of EHRs, their positive effects on productivity, nor decreased costs. Should beneficence be universally acknowledged, conflicts exist with other ethical principles. Autonomy is jeopardized when patients' health data are shared or linked without the patients' knowledge. Fidelity is breached by the exposure of thousands of patients' health data through mistakes or theft. Lack of confidence in the security of health data may induce patients to conceal sensitive information. As a consequence, their treatment may be compromised. Justice is breached when persons, because of their socioeconomic class or age, do not have equal access to health information resources and public health services. Health personnel, leaders, and policy makers should discuss the ethical implications of EHRs before the occurrence of conflicts among the ethical principles. Recommendations to guide health personnel, leaders, and policy makers are provided.

The increasing volume of medical data online, including laboratory data, represents a substantial resource that can provide a foundation for improved understanding of disease presentation, response to therapy, and health care delivery processes. Data mining supports these goals by providing a set of techniques designed to discover similarities and relationships between data elements in large data sets. Currently, medical data have several characteristics that increase the difficulty of applying these techniques, although there have been notable medical data mining successes. Future developments in integrated medical data repositories, standardized data representation, and guidelines for the appropriate research use of medical data will decrease the barriers to mining projects.

The shift in health care to an aggregate corporate and distributed model dominated by electronic methods of diagnosis, record-keeping and communication spanning jurisdictional boundaries raises technical, social and paradigmatic issues. The technical issues concern the material natures of the tools, devices, procedures and protocols; the social issues gravitate around abstract matters like individual rights and models of responsibility within a corporate setting and accountability in inter-jurisdictional contexts; the paradigmatic issues centre in the question of how the rights and duties of traditional and direct health care translate into the mediated context of the globally expanded corporate model of eHealth and telemedicine. The present discussion presents a brief overview of the issues and sketches some of their implications for the evolution of contemporary health care.

Paper-based privacy policies fail to resolve the new changes posed by electronic healthcare. Protecting patient privacy through electronic systems has become a serious concern and is the subject of several recent studies. The shift towards an electronic privacy policy introduces new ethical challenges that cannot be solved merely by technical measures. Structured Patient Privacy Policy (S3P) is a software tool assuming an automated electronic privacy policy in an electronic healthcare setting. It is designed to simulate different access levels and rights of various professionals involved in healthcare in order to assess the emerging ethical problems. The authors discuss ethical issues concerning electronic patient privacy policies that have become apparent during the development and application of S3P.

Objectives: The present study discusses ethics in building and using applications based on natural language processing in electronic nursing documentation. Specifically, we first focus on the question of how patient confidentiality can be ensured in developing language technology for the nursing documentation domain. Then, we identify and theoretically analyze the ethical outcomes which arise when using natural language processing to support clinical judgement and decision-making. In total, we put forward and justify 10 claims related to ethics in applying language technology to nursing documents., Methods: A review of recent scientific articles related to ethics in electronic patient records or in the utilization of large databases was conducted. Then, the results were compared with ethical guidelines for nurses and the Finnish legislation covering health care and processing of personal data. Finally, the practical experiences of the authors in applying the methods of natural language processing to nursing documents were appended., Results: Patient records supplemented with natural language processing capabilities may help nurses give better, more efficient and more individualized care for their patients. In addition, language technology may facilitate patients' possibility to receive truthful information about their health and improve the nature of narratives. Because of these benefits, research about the use of language technology in narratives should be encouraged. In contrast, privacy-sensitive health care documentation brings specific ethical concerns and difficulties to the natural language processing of nursing documents. Therefore, when developing natural language processing tools, patient confidentiality must be ensured. While using the tools, health care personnel should always be responsible for the clinical judgement and decision-making. One should also consider that the use of language technology in nursing narratives may threaten patients' rights by using documentation collected for other purposes., Conclusions: Applying language technology to nursing documents may, on the one hand, contribute to the quality of care, but, on the other hand, threaten patient confidentiality. As an overall conclusion, natural language processing of nursing documents holds the promise of great benefits if the potential risks are taken into consideration.