As policy makers place great hope in health information technology as a means to lower costs and achieve improvements in health care quality, safety, and efficiency, organizations at the forefront of building health information exchange networks attempt to weave the concept and function of informed consent into an evolving information-driven health care system. The vast amount of information that will become available to both health professionals and patients in the new (...) HIT-driven environment can reasonably be expected to affect the relationship between them in many ways, particularly in the area of informed consent. During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consent’s proper role in a heretofore unknown health care environment — one in which electronic information sharing holds primary importance. The central and largely unexamined question of whether and how the legal and ethical underpinnings of informed consent will fit into the context of HITenabled treatment is critical to both public policy and clinical practice. (shrink)

This review analyzes the social perspective of patient safety and how pharmacists should consider these elements when adopting health information technology (HIT) into their practice.

In discussions of health reform, the increased use of health information technology is a common element of nearly every serious proposal on the table. Health IT includes electronic health records kept by providers, personal health records offered by health insurance plans or owned by consumers, and electronic health information exchanges. Although health reform initiatives being discussed contain little detail regarding health IT, in general they promote health IT (...) to facilitate the electronic sharing of health information to improve individual and population health. During the 2008 presidential campaign, the health care proposals of both President Obama and Senator McCain discussed health IT. President Obama’s proposal invests $50 billion over the next five years to promote the adoption of health IT with privacy safeguards. Senator McCain’s plan also encouraged the adoption of health IT, with an emphasis on coordination. (shrink)

Since the fourth century, B.C.E., the Oath of Hippocrates has been the starting point in analyzing the obligations of physicians to protect the privacy and confidentiality interests of their patients. The pertinent provision of the Oath reads as follows: “What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account must be spread abroad, I will keep to myself, holding such things shameful (...) to be spoken about.”This part of the Oath is subject to more than one interpretation, but its commonly accepted meaning provides the ethical foundation for the physician’s duty of confidentiality. The Oath expressly declares that a physician’s obligation of confidentiality applies beyond matters of medical care. At a time when there were no hospitals or physician offices, patients received medical care in their homes or in public places. Physicians treating patients in their homes could be expected to see and hear a wide range of activities that might be considered embarrassing, immoral, or even illegal. (shrink)

Health information technology is becoming increasingly prevalent in medical offices and facilities. Like President George W. Bush before him, President Obama announced a plan to computerize all Americans’ medical records by 2014. Computerization is certain to transform American health care, but to ensure that its benefits outweigh its risks, the federal government must provide appropriate oversight.President Obama’s stimulus legislation, the American Recovery and Reinvestment Act of 2009, dedicated $27 billion to the promotion of health (...) class='Hi'>information technology. It provides payments of up to $44,000 per clinician under the Medicare incentive program and $63,750 per clinician under the Medicaid program. (shrink)

One of the largest, oldest, and most interesting challenges in health care is the balancing act in which clinicians have generally uncontroversial duties both to individual patients and to communities. Physicians and nurses must — so we teach them — put patients first, and at the same time recognize that individuals are members of communities. Individuals affect the health of communities, and communities affect the health of individuals. Thus, the moral and professional duties that result are sometimes (...) in conflict.Moreover, the traditional, prosaic clinical encounter is evolving in an environment increasingly shaped by electronic health records, personal health records, pharmacogenomics and vast networks of data collection and storage for public health surveillance, human subjects research, health services evaluation, and comparative effectiveness research. Health information technology is changing everything. It would be perverse otherwise: imagine large amounts of data and information either ignored, missed, or collected and then ignored. (shrink)

There are a variety of ethical and legal issues that arise with the growing use of health information technology in clinical settings. While privacy and confidentiality of information is an important consideration in any electronic system, some of the issues related to using these systems to improve patient safety include changes to the standard of care in regard to using electronic rather than paper medical records, user training, and assuring accurate information is in the medical (...) record and provided to users. There are other unique issues involved with the use of clinical decision support tools, exchange of health information across institutions, and the incorporation of genomic information into the clinical record. Informed consent for exchange of information as well as for the use of specialized tools will also be important to address. Health care information technology is rapidly improving and momentum is building for its expanded implementation. Strategies need to be developed to maximize the benefits of health information technology while minimizing the risks of harm associated with its implementation. The ethical issues raised in this article need to be addressed if the enormous potential of these systems to improve patient safety and quality of care is to be realized. Springer 2008. (shrink)

Physicians' duties to their patients traditionally have been construed narrowly in time and scope to focus on the specific episode of care or clinical encounter. Physicians generally have had no ethical or legal duty to notify patients about new medical information discovered after a visit, notwithstanding the health care benefits to patients that might flow from receiving the information. The rule was based on the relatively high burdens that notification would impose on physicians compared with the likelihood (...) of benefits to patients. This established view, however, no longer may be appropriate in light of new physician-patient relationships and the reduced burden of patient notification using new types of health information technology. This article explores the duty to inform patients and former patients about relevant, medical developments subsequent to their episode of care. It concludes by recommending the recognition in ethics and law of a limited, ongoing duty to notify patients of significant information relevant to their health. (shrink)

Can computer and information technology (IT), widely used in the development of livestock health and production, be of any benefit for Third World farmers and institutions? And if so, how can they be implemented on a large scale? The authors try to answer these and related questions based on experiences with computerized dairy herd health and production programs in Costa Rica. They conclude that IT is becoming a key instrument in the planning and operation of modern (...) extension services and on-farm research for meeting the farmers' increasing needs for information and for enhancing their ability to manage the available resources efficiently. IT enables private sector extension services provided by farmer groups and advisors to give farmers access to information that they previously lacked. These services facilitate bottom-up planning. Where IT does not allow the farmer or extension agent to solve the problem, IT can be used to articulate the problem for researchers or policy makers to address. For low-resource smallholders, access to IT can be provided through local farmer organizations. At the institutional level, IT is giving a strong impulse to the improvement of on-farm research, teaching programs, institutional and disciplinary cooperation, regional networking, and to a better linkage with the productive sector. (shrink)

In May 1973 a new collaboration between NASA, the Indian Health Service, and the Lockheed Missiles and Space Company promised to transform the way members of the Papago (now Tohono O’odham) Tribe of southern Arizona accessed modern medicine. Through a system of state-of-the-art microwave relays, slow-scan television links, and Mobile Health Units, the residents of the third-largest American Indian reservation began to access physicians remotely via telemedical encounters instead of traveling to distant hospitals. Examining the history of the (...) STARPAHC (Space Technology Applied to Rural Papago Advanced Health Care) project from the perspective of NASA and its contractors, from the perspective of the Indian Health Service, and from the perspective of O’odham engineers and health professionals offers a new focus, emphasizing the American Indian reservation as a site of medical research and technological development in the late twentieth century, with specific attention to the promise of information technology to address health disparities and the role of American Indians as actors in the late twentieth-century history of science, technology, and medicine. (shrink)

The global digital divide represents one of the most significant examples of international inequality. In North America and Western Europe, nearly 70% of citizens use the Internet on a regular basis, whereas in Africa less than 4% do so. Such inequality impacts business and trade, online education and libraries, telemedicine and health resources, and political information and e-government. In response, a group of educators and community leaders in South Africa and the United States have used various information (...) technologies to create a ―global classroom‖ that connects people in the two countries. University students, high school students, and other citizens communicate via Internet exchanges, video conferencing, and digital photo essays. The project has produced a number of tangible benefits and it has developed a model for reducing inequality in global education, at least for those institutions with the technological resources to participate. We also present several recommendations for how to expand the initiative and thereby increase the number of people who can benefit from it. (shrink)

Within a given conversation or information exchange, do privacy expectations change based on the technology used? Firms regularly require users, customers, and employees to shift existing relationships onto new information technology, yet little is known as about how technology impacts established privacy expectations and norms. Coworkers are asked to use new information technology, users of gmail are asked to use GoogleBuzz, patients and doctors are asked to record health records online, etc. Understanding (...) how privacy expectations change, if at all, and the mechanisms by which such a variance is produced will help organizations make such transitions. This paper examines whether and how privacy expectations change based on the technological platform of an information exchange. The results suggest that privacy expectations are significantly distinct when the information exchange is located on a novel technology as compared to a more established technology. Furthermore, this difference is best explained when modeled by a shift in privacy expectations rather than fully technology-specific privacy norms. These results suggest that privacy expectations online are connected to privacy offline with a different base privacy expectation. Surprisingly, out of the five locations tested, respondents consistently assign information on email the greatest privacy protection. In addition, while undergraduate students differ from non-undergraduates when assessing a social networking site, no difference is found when judging an exchange on email. In sum, the findings suggest that novel technology may introduce temporary conceptual muddles rather than permanent privacy vacuums. The results reported here challenge conventional views about how privacy expectations differ online versus offline. Traditionally, management scholarship examines privacy online or with a specific new technology platform in isolation and without reference to the same information exchange offline. However, in the present study, individuals appear to have a shift in their privacy expectations but retain similar factors and their relative importance—the privacy equation by which they form judgments—across technologies. These findings suggest that privacy scholarship should make use of existing privacy norms within contexts when analyzing and studying privacy in a new technological platform. (shrink)

Computer-based information and communication technologies continue to transform the delivery of health care and the conception and scientific understanding of the human body and the diseases that afflict it. While information technology has the potential to improve the quality and efficiency of patient care, it also raises important ethical and social issues. This IRIE theme issue seeks to provide a forum to identify, analyse and discuss the ethical and social issues raised by various applications of (...) class='Hi'>information and communication technology in medicine and health care. The contributions give a flavour of the extraordinarily broad landscape shaped by the intersection of medicine, computing and ethics. In fact, their diversity suggests that much more work is needed to clarify issues and approaches, and to provide practical tools for clinicians. (shrink)

Information technology is considered a potentially transformative element in the field of health care by payers, providers, vendors, and consumers alike. Because of this transformative potential, health information technology adoption is viewed by many as a key component of health system reform. HIT is in its earliest stages, with diffusion of the technology still relatively limited; at the same time, there is growing awareness of its potential to affect the operation of the (...) entire health care system as a result of the vast amount of information that will become available to both health professionals and patients. (shrink)

A distinction is made between moral indoctrination and instruction in ethics. It is argued that the legitimate and important field of computer ethics should not be permitted to become mere moral indoctrination. Computer ethics is an academic field in its own right with unique ethical issues that would not have existed if computer technology had not been invented. Several example issues are presented to illustrate this point. The failure to find satisfactory non-computer analogies testifies to the uniqueness of computer (...) ethics. Lack of an effective analogy forces us to discover new moral values, formulate new moral principles, develop new policies, and find new ways to think about the issues presented to us. For all of these reasons, the kind of issues presented deserve to be addressed separately from others that might at first appear similar. At the very least, they have been so transformed by computing technology that their altered form demands special attention. (shrink)

In order to maximize human performance, defence forces continue to explore, develop, and apply human performance enhancement (HPE) methods, ranging from pharmaceuticals to (bio)technological enhancement. This raises ethical, legal, and societal concerns and requires organizing a careful reflection and deliberation process, with relevant stakeholders. We discuss a range of ethical, legal, and societal aspects (ELSA), which people involved in the development and deployment of HPE can use for such reflection and deliberation. A realistic military scenario with proposed HPE application can (...) serve as a starting point for such an iterative and participatory process. Stakeholders can discuss this application, modify its features, and design appropriate processes around it – for instance, procedures for informed consent. We propose that organizing aspects into these three categories – ethical, legal, and societal – can help involve appropriate interlocutors at different moments: legal aspects with people in strategy or management roles, from the start of a project; ethical aspects with people in operations and medical roles, during development; and societal aspects with people in communication and personnel roles, during deployment. Notably, we developed and discussed this framework and the three aspects in close collaboration with personnel from the military. (shrink)

Information and communication technology is changing many aspects ofhuman endeavour and existence. This is beyond dispute for most. Whatare contested are the social and ethical implications of thesechanges. Possible sources of these disputes are the multiple ways inwhich one can conceptualize and interpret the informationtechnology/society interrelationship. Each of these ways ofconceptualization and interpretation enables one to see theinformation technology/society relationship differently and thereforeconstrue its social and ethical implications in a different manner. Atthe center of this technology/society (...) interrelationship we find manycomplex questions about the nature of the human, the technical,agency, autonomy, freedom and much more. This is indeed a vastintellectual landscape, which can obviously not be explored here inits fullness. This entry is about just one particular perspective onthis landscape. It is primarily concerned with the phenomenologicalapproach to interpreting information technology and its social andethical implications. It should be noted from the start that there isnot a unified phenomenological tradition or approach to informationtechnology in particular, or other phenomena more generally. Thephenomenological tradition consists of many different approaches thatshare certain characteristics but not all. We may however suggest, with Don Ihde,that they all accept that “phenomenology investigates theconditions of what makes things appear as such [as that which we takethem to be].” Differently stated, phenomenology suggests thatthere is a co-constitutive relationship between us and the phenomenawe encounter in our engagement with the world. In this sensephenomenologists would suggest that to understand thetechnology/society relationship we need to reveal how theyco-constitute each other—i.e. draw on each other for theirongoing meaning and sense. We will elaborate more precisely what thismeans in section 2 below. However, in order to understand the distinctiveness of thephenomenological approach other possible ways of interpreting thistechnology/society relationship will also be outlined brieflybelow., It can be said that information technology has become in a very realsense ubiquitous. Most everyday technologies such as elevators,automobiles, microwaves, watches, and so forth depend onmicroprocessors for their ongoing operation. Most organizations andinstitutions have become reliant on their information technologyinfrastructure to a lesser or greater degree. Indeed informationtechnology is seen by many as a cost-efficient way to solve amultitude of problems facing our complex contemporary society. One canalmost say that information technology has become construed as thedefault technology for solving a whole raft of technical and socialproblems such as health provision, security, governance, etc. Onecould also argue that it has become synonymous with society’sview of modernization and progress. For most it seems obvious thatinformation technology has made it possible for humans to continue toconstruct increasingly complex systems of coordination and socialordering—systems without which contemporary society would not beable to exist in its present form. To say the least, we, ascontemporary human beings, have our manner of being made possiblethrough a rather comprehensive entanglement with information andcommunication technology. Indeed, the economic, organizational andsocial benefit of information technology is not widely disputed. Thedispute is more often about the way information technology is changingor transforming the social domain, and in particular, the ethicaldomain. This dispute is largely centered around different ways ofconceptualizing and interpreting the nature of our entanglement withinformation technology. This debate is not merely an academic debateabout different and competing theoretical ‘models.’Rather, these different ways of conceptualizing it is central to ourunderstanding of how we go about managing our increasingly entangledrelationship with information technology. (shrink)

It is critical to remember details about meetings with healthcare providers. Forgetting could result in inadequate knowledge about ones' health, non-adherence with treatments, and poorer health outcomes. Hearing the health care provider plays a crucial role in consolidating information for recall. The recent COVID-19 pandemic has meant a rapid transition to videoconference-based medicine, here described as telehealth. When using telehealth speech must be filtered and compressed, and research has shown that degraded speech is more challenging to (...) remember. Here we present preliminary results from a study that compared memory for health information provided in-person to telehealth. The data collection for this study was stopped due to the pandemic, but the preliminary results are interesting because the pandemic forced a rapid transition to telehealth. To examine a potential memory deficit for health information provided through telehealth, we presented older and younger adults with instructions on how to use two medical devices. One set of instructions was presented in-person, and the other through telehealth. Participants were asked to recall the instructions immediately after the session, and again after a 1-week delay. Overall, the number of details recalled was significantly lower when instructions were provided by telehealth, both immediately after the session and after a 1-week delay. It is likely that a mix of technological and communication strategies by the healthcare provider could reduce this telehealth memory deficit. Given the rapid transition to telehealth due to COVID-19, highlighting this deficit and providing potential solutions are timely and of utmost importance. (shrink)

Nanotechnologies, biotechnologies, information technologies and cognitive sciences (NBIC) have gradually gained traction in the United States of America (USA), subsequently expanding to Europe, and are now proliferating worldwide. Scientists are trying with more success to remove the causes of death by “repairing” humans, or even by “increasing” their physical and cognitive capacities. NBICs not only can help researchers promote “one health” by improving environmental conditions, human and animal health, but also, they can lead humanity towards transhumanism through (...) eugenics. Thanks to the principle of totality, the intentional modification of the human body for therapeutic purposes through surgery has always been seen as a source of medical progress. But how far can the living human body be modified at will? Gilbert Hottois and Jean-François Mattei have deciphered transhumanism to question its alleged “humanism” and study its impact on our humanity. Today, science has gone further thanks to the possibilities offered by converging NBIC technologies and especially with the advent of human genome editing! The objective of this article is to highlight the hopes and fears of Homo sapiens following the applications of NBICs, and to propose ethical reflections on the invading transhumanist and posthumanist doctrines that tend to become spiritual movements, even religions. A summary study, based on a scientific bibliography, linked to NBICs and including ethical aspects, will present the ethical issues of the convergence of nanotechnologies, biotechnologies, information technologies and cognitive sciences, which could become a springboard for transhumanism and posthumanism. (shrink)

The Centers for Disease Control and Prevention’s goal is to develop a surveillance system of public health laws that would both support research and analysis among policymakers and legislators, and support the scientific basis for public health law. This session was convened, in part, to discuss the value of creating an electronic system to track public health legal information. Public health surveillance is the “ongoing, systematic collection, analysis, interpretation, and dissemination of data regarding a (...) class='Hi'>health-related event for use in public health action to reduce morbidity and mortality and to improve health. Data disseminated by a public health surveillance system can be used for immediate public health action, program planning and evaluation, and formulating research hypotheses.” There is currently no system available that meets the goals of this definition of “surveillance” for public health laws. (shrink)

Rapid advances and exponential growth in computer and telecommunications technology have taken individual records and papers revealing the most intimate details of one’s life, habits, and genetic predisposition from the private sector into the public arena in derogation of privacy considerations. Although computerized medical information offers a means of streamlining and improving the health care delivery system through speed and enormous storage capacity, it also presents new challenges as it affects the right of privacy and expectation of (...) confidentiality, creating serious ethical and legal issues. Other considerations include constitutional matters such as loss of liberty when one is compelled to remain in an undesirable or unsuitable job so that insurance will not be canceled or the inability to secure another more suitable position due to genetic predisposition and denial of equal protection of the laws if one is stigmatized because one belongs to a certain ethnic or racial group that exhibits a particular genetic propensity. Collateral questions concern the propriety of disclosure of confidential health care information, including genetic data. This article also considers the proposed federal guidelines for a health information privacy law. (shrink)

The different and seemingly unrelated practices of Information and Communication Technologies used to collect and share personal and scientific data within networked communities, and the organized storage of human genetic samples and information—namely biobanking—have merged with another recent epistemic and social phenomenon, namely scientists and citizens collaborating as “peers” in creating knowledge. These different dimensions can be found in joint initiatives where scientists-and-citizens use genetic information and ICT as powerful ways to gain more control over their (...) class='Hi'>health and the environment. While this kind of initiative usually takes place only after rights have been infringed —as the two cases presented in the paper show—collaborative scientists-and-citizens’ knowledge should be institutionally allowed to complement and corroborate official knowledge-supporting policies. (shrink)

Novel and emerging technologies can provide users with new kinds and unprecedented amounts of information about themselves, such as autobiographical information, neurodata, health information, or characteristics inferred from online behavior. Technology providing extensive personal information (PI technology) can impact who we take ourselves to be, how we constitute ourselves, and indeed who we are. This paper analyzes how the external, quantified perspective on us offered by PI technology affects identity based on a (...) narrative identity theory. Disclosing the intimate relationship between PI technology and identity sheds light on a whole new range of ethical issues that have so far not received sufficient attention. Personal information provided by technology is not just information that belongs to individuals but that changes them. (shrink)

This study aims to compare and contrast how specific information health technologies (IHTs) have been debated, how they have proliferated, and what they have enabled in Germany’s and England’s healthcare systems. For this a discourse analysis was undertaken that specifically focussed on future-scenarios articulated in policy documents and strategy papers released by relevant actors from both healthcare systems. The study reveals that the way IHTs have been debated and how they have proliferated depends on country-specific regulatory structures, their (...) respective values, actors’ and institutions’ organized interests, and the status of health professionals. These conditions have enabled IHTs to promote a new and similar concept of patienthood in both countries, although they tend to affect practitioners’ practices more dramatically in England. The conclusion is drawn that with the usage of IHTs, healthcare systems reproduced existing patterns of health provision while also enabling a sort of convergence. Future research should investigate whether the new concept of patienthood emerging in both welfare states actually suits patients’ and professionals’ needs and requirements. (shrink)

Information and computer technology has come to play an increasingly important role in medicine, to the extent that e-health has been described as a disruptive innovation or revolution in healthcare. The attention is very much focused on the technology itself, and advances that have been made in genetics and biology. This leads to the question: What is changing in medicine today concerning e-health? To what degree could these changes be characterized as a ‘revolution’? We will (...) apply the work of Thomas Kuhn, Larry Laudan, Michel Foucault and other philosophers—which offers an alternative understanding of progress and revolution in medicine to the classic discovery-oriented approach—to our analysis. Nowadays, the long-standing curative or reactive paradigm in medicine is facing a crisis due to an aging population, a significant increase in chronic diseases and the development of more expensive diagnostic tools and therapies. This promotes the evolution towards a new paradigm with an emphasis on preventive medicine. E-health constitutes an essential part of this new paradigm that seeks to solve the challenges presented by an aging population, skyrocketing costs and so forth. Our approach changes the focus from the technology itself toward the underlying paradigm shift in medicine. We will discuss the relevance of this approach by applying it to the surge in digital self-tracking through health apps and wearables: the recognition of the underlying paradigm shift leads to a more comprehensive understanding of self-tracking than a solely discovery-oriented or technology-focused view can provide. (shrink)

The availability of medical and health information on the world wide web has led to a long discussion about the reliability of that information. Various medical, political, and independent organizations have created user-friendly tools for finding reliable medical/health information on the web and have been faced with the challenge of defining what it means for information to be reliable. Little attention has been given to the work of reviewing web-based information and applying selection (...) criteria to individual sites. In this article, the authors examine how guidelines are applied in practice and discuss how the selection criteria and the practices of applying them reinforce distinctions that current medical sociology and informatics literature suggests have been broken down by internet technologies and the availability of web-based medical information. (shrink)

Aiming at the problem of insufficient health monitoring of the elderly in the existing home care system, this paper designs a health information analysis and early warning system based on the Internet of Things technology, which can monitor the physiological data of the elderly in real time. It also can be based on the elderly real-time monitoring data, physical examination data, and other types of health data, which can be used to predict diseases, so as (...) to achieve “early detection and early treatment” of diseases. First, analyse and design the architecture and content of the home care monitoring system based on the Internet of Things. Secondly, based on the collected heart rate, blood pressure, and three-axis acceleration information of the elderly, it is analysed to determine whether the elderly are in danger of falling, and the designed system is used for early warning. Finally, this paper analyses the prediction algorithm theory of the disease prediction module in the health monitoring software of the home care system. In order to improve the accuracy of prediction, the DS evidence theory is used to optimize the traditional BP neural network algorithm and conduct experimental tests. The test results show that the health information analysis and early warning software of the home care system meet actual needs and achieve the expected goals. (shrink)

Protecting the privacy of individually-identifiable health data is a dominant health policy objective in the new millennium. Technological, economic, and health-related reasons substantiate the development of a national electronic health information infrastructure. Through this emerging infrastructure, billions of pieces of health data of varying sensitivities are exchanged annually to provide health care services and service transactions, conduct health research, and promote the public’s health. These multi-purpose, rapid exchanges of electronic health (...) data, far removed from the typical disclosure of health information through the doctor/patient relationship of yesteryear, contribute to heightened individual concerns about identifiable health data. Responding to American fears and perceptions of actual and potential privacy abuses, policymakers have recently developed new, modern privacy protections through legislative and regulatory laws, as well as ethical and industry codes.Modern health information privacy protections are reflected in federal regulations developed by the federal Department of Health and Human Services pursuant to the Health Insurance Portability and Accountability Act of 1996. (shrink)

The United States, like other countries facing rising health care costs, is pursuing a commitment to interoperable electronic health records. Electronic records, it is thought, have the potential to reduce the risks of error, improve care coordination, monitor care quality, enable patients to participate more fully in care management, and provide the data needed for research and surveillance. Interoperable electronic health records on a national scale — the ideal of a national health information network — (...) seem likely to magnify these advantages. Thus, the recent economic stimulus package contains considerable funding for the development of “health information technology architecture that will support the nationwide electronic exchange and use of health information in a secure, private, and accurate manner.”. (shrink)

BackgroundAdvances in healthcare artificial intelligence (AI) are occurring rapidly and there is a growing discussion about managing its development. Many AI technologies end up owned and controlled by private entities. The nature of the implementation of AI could mean such corporations, clinics and public bodies will have a greater than typical role in obtaining, utilizing and protecting patient health information. This raises privacy issues relating to implementation and data security. Main bodyThe first set of concerns includes access, use (...) and control of patient data in private hands. Some recent public–private partnerships for implementing AI have resulted in poor protection of privacy. As such, there have been calls for greater systemic oversight of big data health research. Appropriate safeguards must be in place to maintain privacy and patient agency. Private custodians of data can be impacted by competing goals and should be structurally encouraged to ensure data protection and to deter alternative use thereof. Another set of concerns relates to the external risk of privacy breaches through AI-driven methods. The ability to deidentify or anonymize patient health data may be compromised or even nullified in light of new algorithms that have successfully reidentified such data. This could increase the risk to patient data under private custodianship.ConclusionsWe are currently in a familiar situation in which regulation and oversight risk falling behind the technologies they govern. Regulation should emphasize patient agency and consent, and should encourage increasingly sophisticated methods of data anonymization and protection. (shrink)

Current advances in connectivity, sensor technology, computing power and the development of complex algorithms for processing health-related data are paving the way for the delivery of innovative long-term health care services in the future. Such technological developments will, in particular, assist the elderly and infirm to live independently, at home, for much longer periods. The home is, in fact, becoming a locus for health care innovation that may in the future compete with the hospital. However, along (...) with these advances come valid privacy and security questions arising from the fact that the data collected and transmitted through these technologies could also allow for individual monitoring as well as unauthorized access to critical diagnostic and other health data. (shrink)

The progress of electronic health technologies and biobanks holds enormous promise for efficient research. Evidence shows that studies based on sharing and secondary use of data/samples have the potential to significantly advance medical knowledge. However, sharing of such resources for international collaboration is hampered by the lack of clarity about ethical and legal requirements for transfer of data and samples across international borders. Here, the International Clinical Trial Center Network reports the legal and ethical requirements governing data and sample (...) exchange across four continents. The most recurring requirement is ethical approval, whereas only in specific conditions approval of national health authorities is required. Informed consent is not required in all sharing situations. However, waiver of informed consent is only allowed in certain countries/regions and under certain circumstances. The current legal and ethical landscape appears to be very complex and under constant evolution. Regulations differ between countries/regions and are often incomplete, leading to uncertainty. With this work, ICN illuminates the unmet need for a single international collaborative framework to facilitate DSE. Harmonising requirements for global DSE will reduce inefficiency and waste in research. There are many challenges to realising this ambitious vision, including inconsistent terminology and definitions, and heterogeneous and dynamic legal constraints. Here, we identify areas of agreement and significant difference as a necessary first step towards facilitating international collaboration. We propose the establishment of a working group to continue the comparison across jurisdictions, create a standardised glossary and define a set of basic principles and fundamental requirements for DSE. (shrink)

While the Internet has emerged as a significant resource for women negotiating the questions and circumstances that arise during conception, pregnancy and childbirth, it remains unclear what role the Internet plays in challenging the current biomedical paradigm and empowering women to make meaningful choices. This article explores how women use the Internet to manage their pregnancies and mediate their doctor–patient relationships, particularly examining the role of social class and personal health history in shaping such Internet use. Drawing from in-depth (...) interviews with white middle-class mothers, the findings show that rather than using technology to resist the dominant biomedical paradigm, most women turned to online resources that affirmed mainstream medical authority and continued to rely on their doctors. By providing the means to confirm normalcy and take control in their reproductive experiences, the Internet enables socially privileged women to more fully perform the informed patient role in order to demonstrate their competence as mothers. (shrink)

Despite the great expansion and many benefits of information and communication technologies in healthcare, the attitudes of Polish general practitioners to e-health have not been explored. The aim of this study was to determine the GPs’ perception of ICT use in healthcare and to identify barriers to the adoption of EMR in the Podlaskie Voivodeship. Online and telephone surveys were conducted between April and May 2013. Responses from 103 GP practices, 43% of all practices in the region, were (...) analysed. The results showed that 67% of the respondents agreed that IT systems improve quality of healthcare services. In the GP group who declared at least partial EMR implementation, 71.4% see the positive impact of IT on practice staff processes and 66.1% on personal working processes. In this group, more than three-quarters of GPs did not see any positive impact of ICT on the average number of patients treated per day, number of patients within the practice or scope of services. The four most common barriers to EMR implementation were: lack of funds, risk of a malfunction in the system, resistance to change, and lack of training and proper information. Although the use of ICT by Polish GPs is limited, their attitude to e-health is generally positive or neutral and resembles the overall pattern in Europe. Barriers identified by GPs need to be taken into account to ensure the effective implementation of e-health across the country. (shrink)

Patient data is used to drive an ecosystem of advanced digital tools in health care, like predictive models or artificial intelligence‐based decision support. Patients themselves, however, receive little information about these technologies or how they affect their care. This raises important questions about patient trust and continued engagement in a health care system that extracts their data but does not treat them as key stakeholders. This essay explores these tensions and provides steps forward for health systems (...) as they design advanced health information‐technology (IT) policies and practices. It centers patients, their concerns, and the ways they perceive trustworthiness to reframe advanced health IT in service of patient interests. (shrink)

Bioinformatics, the integration of information technology and biotechnology, is the primary means to make medical sense out of the map of the human genome, and bioinformatics capabilities continue to expand exponentially. Consequently, the demand for access to human biological samples and medical information has never been greater. This demand is giving rise to ambitious biobanking initiatives - meaning the organized collection of samples and medical information from human population.

Electronic information is a vital but complex component in the modern health care system, fueling ongoing efforts to develop a universal electronic health record infrastructure. This innovation creates a substantial tension between two desirable values: the increased quality and utility of patient medical records and the protection of the privacy of the information they contain. This article discusses related U.S. legislation, policy, and law—including the Health Insurance Portability and Accountability Act of 1996. This article offers (...) an inclusive, equilibrium model to conceptualize the spectrum of challenge that this interplay of desirable but oppositional values creates. The model illustrates the relationship between information privacy and information flow, and that between individual and society-level needs, within the resulting impact sectors of individual security, health care priorities, public health effectiveness, and e-health development, while specifying beneficial outcomes for each. (shrink)

Advances in molecular technologies have the potential to help remedy health inequities through earlier detection and prevention; if, however, their delivery and uptake are not more carefully considered, there is a very real risk that existing inequities in access and use will be further exacerbated. We argue this risk relates to the way that information and knowledge about the technology is both acquired and shared, or not, between health practitioners and their patients.A healthcare system can be (...) viewed as a complex social network comprising individuals with different worldviews, hierarchies, professional cultures and subcultures and personal beliefs, both for those giving and receiving care. When healthcare practitioners are not perceived as knowledge equals, they would experience informational prejudices, and the result is that knowledge dissemination across and between them would be impeded. The uptake and delivery of a new technology may be inequitable as a result. Patients would also experience informational prejudice when they are viewed as not being able to understand the information that is presented to them, and information may be withheld.Informational prejudices driven by social relations and structures have thus far been underexplored in considering equitable implementation and uptake of new molecular technologies. Every healthcare interaction represents an opportunity for experiencing informational prejudice, and with it the risk of being inappropriately informed for undertaking such screening or testing. Making knowledge acquisition and information dissemination, and experiences of informational prejudice, explicit through sociologically framed investigations would extend our understandings of equity, and offer ways to affect network relationships and structures that support equity in delivery and uptake. (shrink)