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)

Objectives: To foster the development of a privacy-protective, sustainable cross-border information system in the framework of a European public health project. Materials and methods: A targeted privacy impact assessment was implemented to identify the best architecture for a European information system for diabetes directly tapping into clinical registries. Four steps were used to provide input to software designers and developers: a structured literature search, analysis of data flow scenarios or options, creation of an ad hoc questionnaire and (...) conduction of a Delphi procedure. Results: The literature search identified a core set of relevant papers on privacy. Technicians envisaged three candidate system architectures, with associated data flows, to source an information flow questionnaire that was submitted to the Delphi panel for the selection of the best architecture. A detailed scheme envisaging an “aggregation by group of patients” was finally chosen, based upon the exchange of finely tuned summary tables. Conclusions: Public health information systems should be carefully engineered only after a clear strategy for privacy protection has been planned, to avoid breaching current regulations and future concerns and to optimise the development of statistical routines. The BIRO project delivers a specific method of privacy impact assessment that can be conveniently used in similar situations across Europe. (shrink)

BackgroundData processing of health research databases often requires a Data Protection Impact Assessment to evaluate the severity of the risk and the appropriateness of measures taken to comply with the European Union General Data Protection Regulation. We aimed to define and apply a comprehensive method for the evaluation of privacy, data governance and ethics among research networks involved in the EU Project Bridge Health.MethodsComputerised survey among associated partners of main EU Consortia, using a targeted instrument designed by the (...) principal investigator and progressively refined in collaboration with an international advisory panel. Descriptive measures using the percentage of adoption of privacy, data governance and ethical principles as main endpoints were used for the analysis and interpretation of the results.ResultsA total of 15 centres provided relevant information on the processing of sensitive data from 10 European countries. Major areas of concern were noted for: data linkage, access and accuracy of personal data and anonymisation procedures. A high variability was noted in the application of privacy principles.ConclusionsA comprehensive methodology of Privacy and Ethics Impact and Performance Assessment was successfully applied at international level. The method can help implementing the GDPR and expanding the scope of Data Protection Impact Assessment, so that the public benefit of the secondary use of health data could be well balanced with the respect of personal privacy. (shrink)

Background Denmark has implemented a comprehensive, nationwide pharmaceutical information system, and this system has been evaluated by the Danish Council of Ethics. The system can be seen as an exemplar of a comprehensive health information system for clinical use. Analysis The paper analyses 1) how informed consent can be implemented in the system and how different implementations create different impacts on autonomy and control of information, and 2) arguments directed towards justifying not seeking informed consent in (...) this context. Results and Conclusion Based on the analysis a heuristic is provided which enables a ranking and estimation of the impact on autonomy and control of information of different options for consent to entry of data into the system and use of data from the system. The danger of routinisation of consent is identified. The Danish pharmaceutical information system raises issues in relation to autonomy and control of information, issues that will also occur in relation to other similar comprehensive health information systems. Some of these issues are well understood and their impact can be judged using the heuristic which is provided. More research is, however needed in relation to routinisation of consent. (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)

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)

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. -/- Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics (...) framework called a “Points to Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. -/- Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. -/- Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion. (shrink)

Health information exchanges represent one way of making medical information available to practitioners across institutional boundaries. One health information exchange in Memphis Tennessee has been operational since May of 2006 and provides information supporting care for over 1.2 million individuals. Creating such an exchange challenged traditional institutional boundaries, roles, and perceptions. Approaching these challenges required leadership, trust, sound policy, new forms of dialogue, and an incremental approach to technology. Early evidence suggests a positive impact (...) on patient care and a change in the way providers interact with their patients and on another. Personal health records, consolidated EHR systems, and other alternative models promise to have similar impacts on the way in which providers and patients interact with one another. (shrink)

The exponential digitization of medical data has led to a transformation of the practice of medicine. This change notably raises a new complexity of issues surrounding health IT. The proper use of these communication tools, such as telemedicine, e-health, m-health the big medical data, should improve the quality of monitoring and care of patients for an information system to "human face". Faced with these challenges, the author analyses in an ethical angle the patient-physician relationship, sharing, transmission (...) and storage of medical information, setting pins to an ethic for the digitization of medical information. Drawing on good practice recommendations closely associated with values, this model is developing tools for reflection and present the keys to understanding the decision-making issues that reflect both the technological constraints and the complex nature of human reality in medicine. (shrink)

PurposeThis paper discusses the need for health information specialists who can promote patient empowerment by tailoring the information patients receive as they cope with illness. The objectives of this study are to distinguish the various stages of coping with illness, examine the informational needs of patients during these stages, explore how web information contributes to patient empowerment, and describe the potential role of the health information specialist.Design/methodology/approachIn order to meet the study's objectives, a qualitative (...) research method was used in which 110 in‐depth interviews were conducted with patients who told their story of coping throughout the course of illness. By distinguishing and understanding the different stages of coping with illness, we came to distinguish the distinct informational needs during the coping process, and understand how web information contributes to patient empowerment.FindingsThe process of coping with illness has four stages. In each stage, the patient's informational needs differ, as does his ability to absorb and process information. Health systems do not provide information to match the coping stage of the patient. Patients turn to professional and unprofessional internet sites in their search for medical knowledge. The current study, integrated with other studies that show patients' difficulties using the internet, emphasizes the importance of the information specialist in the patient empowerment process.Originality/valueThe study will aid policy makers in the process of empowering patients by demonstrating patients' dynamic informational needs when coping with illness. This study proposes a role for the information specialists that will enable them to expand into the health domain. This role is the health information specialist, a professional who will, among other things, learn how health systems work, identify types of web information sources, assess medical site quality, recognize patients' coping stages, and adapt information to individual characteristics. (shrink)

Truly transforming the healthcare delivery and payment system turns on the ability to engage in the interoperable electronic exchange of patient health information across and beyond the care continuum. Achieving transformation requires a legal framework that supports information sharing with appropriate privacy and security protections and a trusted governance structure.

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)

Patients and their physicians frequently make important health care decisions with incomplete information. Memory fails; records are incomplete; the onset of significant events is confused with other life stories; and even the most basic information about medications, laboratory tests, allergies, and problems is often the result of guesswork. As providers and as patients, we suffer because information vital to health care is not available when and where it is needed. Data required for care are dispersed (...) across various settings and represented in a range of formats; incentives to bring these data together do not exist.In recent years, four specific approaches have emerged to address patient-centered information access. The first model attempts to consolidate all care into a single care delivery and financing system. This model — prevalent in many European countries — is to some degree extant at Kaiser-Permanente and other integrated care and financing systems. This model is ideal if and when one organization is responsible for all care delivery and financing. Such models present “one-stop shopping” for managing health information, coordinating care, communicating with providers and support groups, and ensuring both payment and accountability. (shrink)

The success of the health care system depends on the accuracy, correctness and trustworthiness of the information, and the privacy rights of individuals to control the disclosure of personal information. A national policy on health informational privacy should be guided by ethical principles that respect individual autonomy while recognizing the important collective interests in the use of health information. At present there are no adequate laws or constitutional principles to help guide a rational privacy (...) policy. The laws are scattered and fragmented across the states. Constitutional law is highly general, without important specific safeguards. Finally, a case study is provided showing the important trade-offs that exist between public health and privacy. For a model public health law, see www.critpath.org/msphpa/privacy. (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)

In this article we attempt to answer the question of how the ethical and conceptual framework (ECF) for a learning health‐care system (LHS) affects some of the main controversies in research ethics by addressing five key problems of research ethics: (a) What is the difference between practice and research? (b) What is the relationship between research ethics and clinical ethics? (c) What is the ethical relevance of the principle of clinical equipoise? (d) Does participation in research require a higher (...) standard of informed consent than the practice of medicine? and (e) What ethical principle should take precedence in medicine? These questions allow us to construct two opposite idealized positions on the distinction between research and practice: the integration model and the segregation model of research and practice. We then compare the ECF for an LHS with these two idealized positions. We argue that the ECF for a LHS does not, in fact, solve these problems, but that it is a third, separate position in the relationship between research ethics and clinical ethics. Moreover, we suggest that the ECF for a LHS raises new ethical problems that require additional ethical analysis and justification. Our article contributes to the discussion on the relationship between research ethics and clinical ethics, revealing that although a learning health‐care system may significantly change the landscape of health care, some ethical dilemmas still require resolving on both theoretical and policy‐making levels. (shrink)

This paper discusses how to apply a collective decision model of the principle of voluntary informed consent in African communitarian culture, in a culturally sensitive way, in order to protect research candidates from potential exploitations and abuses. Dismissing cultural and ethical skepticism surrounding the global application of the principle of voluntary informed consent, the paper ultimately concludes that international collaboration on diagnostic and therapeutic medical research in Africa, especially HIV vaccine trials, is a moral imperative.

The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health (...) class='Hi'>information is indispensable for advancing science, medical care and public health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur’s ‘‘little ethics’’, based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur’s ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information. (shrink)

When information is transformed from what has traditionally been a paper-based format into digitized elements with meaning associated to them, new and intriguing discussions begin surrounding proper and improper uses of this codified and easily transmittable information. As these discussions continue, some health care providers, insurers, laboratories, pharmacies, and other healthcare stakeholders are creating and retroactively digitizing our medical information with the unambiguous endorsement of the federal government.Some argue that these enormous databases of medical information (...) offer improved access to timely information, evidence-based treatments, and complete records from which to provide care. To the extent that these claims are true, it would seem that this is a valuable asset that offers immeasurable benefit to all. Others believe this digitization to be an egregious invasion of privacy. In this article, I investigate the broad research questions of whether the public good aspect of capturing private health information outweighs individual interests and whether it is ethical to mandate participation in health information exchanges by all individuals who use the U.S. health system. (shrink)

For decades, health information has been collected and shared for health care delivery and public health purposes. While the “primary use” of patient data for providing direct health care services is the cornerstone of health care practice, health departments rely on data sharing for research and analysis to support disease prevention and health promotion in the population. As the U.S. health system undergoes a digital revolution, health information that was (...) previously captured in paper form now can be captured electronically. Electronic health information has transformed the efficiency, capacity, and functions of the U.S. health system. For this reason, there is increased attention to the “secondary use” of electronic patient data for public health uses, including disease reporting and investigation, syndromic surveillance, and patient-specific or population-level communications about health conditions and their associated risk factors. Secondary uses may also encompass clinical research, licensure, and payment for services. (shrink)

The efforts of the European Commission to create a European Research Area in the field of biotechnology are accompanied by a growing demand for an ethical discourse. Cultural differences between the European Union's member states create a vital need to improve bioethical information structures in Europe so as to foster European bioethics discourses and to cope with ethical pluralism. Responding to the need for an increased European contribution to the international discussion on ethics in medicine and biotechnology, some of (...) Europe's leading bioethics institutions have joined forces to establish the international network EURETHNET . 18 partners from nine European countries agreed to develop an information network and knowledge base in the field of ethics in medicine and biotechnology. This short communication displays the aims, scope and realisation of the network. (shrink)

Health information by its nature is personal and sensitive. At the same time, significant public value has resulted from research with health records about determinants of health and effective provision of health services. In Canada, certain legislation and processes have been established to balance the individual's right to privacy and the public good associated with analysis of health information.My purpose is to describe privacy and confidentiality practices in Canada with respect to access to (...) health data for research purposes. I provide an overview of the Canadian health care system and the legislative framework used to regulate research related to health information and Canada's major national data bases. Then I describe the confidentiality and privacy policies and procedures of Statistics Canada, of the Canadian Institute for Health Information, and of health policy research organizations in three provinces. I conclude with comments on some current issues in health information in Canada. (shrink)

Health information by its nature is personal and sensitive. At the same time, significant public value has resulted from research with health records about determinants of health and effective provision of health services. In Canada, certain legislation and processes have been established to balance the individual's right to privacy and the public good associated with analysis of health information.My purpose is to describe privacy and confidentiality practices in Canada with respect to access to (...) health data for research purposes. I provide an overview of the Canadian health care system and the legislative framework used to regulate research related to health information and Canada's major national data bases. Then I describe the confidentiality and privacy policies and procedures of Statistics Canada, of the Canadian Institute for Health Information, and of health policy research organizations in three provinces. I conclude with comments on some current issues in health information in Canada. (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)

: Widespread collection and use of identifiable information can promote social goods while, at the same time, infringing on personal privacy. Information systems are developing within the context of a fundamental transformation in the organization, delivery, and financing of health care. Changes in the health care system include rapid development of employer-sponsored health coverage, managed care organizations, and integrated delivery systems. These complex, multifaceted arrangements for delivering and paying for health care require (...) ever-more-sophisticated information systems that facilitate extensive sharing of personal data. Systemic flows of sensitive health information occur both vertically and horizontally among employers, hospitals, insurers, laboratories, and suppliers. Beyond this complex web of vertical and horizontal sharing are the multiple demands for information management, quality assurance, research, governmental regulation, and public health. Theoretical problems exist with the law and ethics of informational privacy. The traditional method of exercising control over personal health information is through informed consent. Informed consent, however, within a modern health information infrastructure becomes highly complex. In this kind of environment, the doctrine of informed consent is flawed and does not provide sufficient control over personal information to assure adequate protection of privacy. (shrink)

Institutional review boards distinguish health care quality improvement and health care quality improvement research based primarily on the rigor of the methods used and the purported generalizability of the knowledge gained. Neither of these criteria holds up upon scrutiny. Rather, this apparently false dichotomy may foster under-protection of participants in QI projects and over-protection of participants within QIR.

The continuing spread and development of electronic data interchange in health care settings is fuelling a significant global debate about the practicality, ethics, and legality of such a practice. The uncertainties implicit in this debate are particularly acute in the context of disease or population groups for whom multidisciplinary, multipleagency teamworking has become acknowledged as the “best practice” for providing effective and timely care or support. The greying of the population is a demographic phenomenon that will have a profound (...) impact on the health care system, social care agencies, and caregivers, and will require a greater degree of service coordination in order to meet the complex care needs of both care-receiver and caregiver. (shrink)

The new Hungarian Labour Code allows informal payments to be accepted, subject only to the prior permission of the employer. In Hungary, the area most affected is Health Care, where informal payments to medical staff are common. The article assesses the practice on ethical terms, focusing on organisational justice. It includes an analysis of distributional injustice, that is, of non-equitable payments to professionals, on the distribution of payments depending on the specialisation and status of the doctor, on his or (...) her rights to allocate Health Care resources and/or on how assertive he or she is. We show, by means of a content analysis of internet postings and of interviews with physicians, the feelings and attitudes of both patients and doctors—thus enabling us to trace interactional and procedural injustice and portray the main driving forces of informal payment with causal loops. We use a new approach (a system dynamics computer simulation) to demonstrate how informal payments influence therapy procedures. The example of treating the common skin disease of psoriasis examines the specific behaviour of doctors in their everyday practice and estimates the extent to which the prescription of unnecessary or more expensive therapy increases the costs. With this multi-method approach, we demonstrate that the legislation allowing informal payment represents bad ethics, since it enforces organisational injustice, creates mistrust between physicians and patients, decreases performance and increases the total costs paid both by society and the Health Insurance Fund. Informal payments distort the allocation of resources, enforce discrimination based solely on money, violate the concept of solidarity and limit Human Rights in terms of health. (shrink)

The continuing spread and development of electronic data interchange in health care settings is fuelling a significant global debate about the practicality, ethics, and legality of such a practice. The uncertainties implicit in this debate are particularly acute in the context of disease or population groups for whom multidisciplinary, multipleagency teamworking has become acknowledged as the “best practice” for providing effective and timely care or support. The greying of the population is a demographic phenomenon that will have a profound (...) impact on the health care system, social care agencies, and caregivers, and will require a greater degree of service coordination in order to meet the complex care needs of both care-receiver and caregiver. (shrink)

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)

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)

We are never illness or disease, but, rather, always their sum in the world of day-to-day experience. Disease and illness are not closed systems, but mutually constitutive and continuously interacting worlds. In the patient’s case it is always experience as well. Pain, sickness and death help make that particular experienced identity unavoidable, and at some level ultimately inaccessible to medicine’s changing understanding of disease and tools for managing it. Health—rather than cost containment, specific conditions, or technologies—should be the (...) central focus for health care and health-care reform. A compelling reason to focus on health comes from the observation that the prevalence of disease over the .. (shrink)

Against Nature – Chapter Abstracts Chapter 1. A Transdisciplinary Approach. In this short book you will find philosophy – metaphysical and political - economics, critical theory, complexity theory, ecology, sociology, journalism, and much else besides, along with the signposts and reference texts of the Information Systems field. Such transdisciplinarity is a challenge for both author and reader. Such books are often problematic: sections that are just old hat to one audience are by contrast completely new and difficult to (...) another. My hope is that in the interconnections, arguments and thrust of this polemic, readers will discover both interest and insight, alongside a range of new avenues to explore. This introductory chapter sets the scene – today’s digital world of Tech Giants and Fake News, its roots in the philosophical arguments of the 1920s, and the book’s key claims: (i) that the early 20th century philosophical grounding of today’s digital revolution is culpable in digital’s (growing) contribution to the ecological catastrophe unfolding in the 21st century; (ii) that process philosophy offers a new way to rethink that philosophical grounding, and reshape the digital revolution to support strategies to counter that catastrophe. Chapter 2. The Problem with Digital. This chapter begins with a brief overview of the research approaches in information systems as an academic field, before turning to the deeper roots of its malaise, in individualism, and its looming consequences. The three branches of Information Systems research, in academia, prove to be a useful lens through which to understand the field: Positivism, Interpretivism, and the Critical stance taken by this book. The ‘scientism’ at the root of positivism is examined, and the positivism in Information Systems critiqued as a historically contingent response to the ascendancy of a new brand of economics in Business Schools after the Second World War. But the computational market-fundamentalist form of economics sponsored in the 1950s (and applied by governments since the 1970s) centred around notions of the individual rational actor as an information processor. The philosophical underpinning of methodological and possessive individualism in this approach is exposed, and its influence upon the development – long before computing – of the science of ecology, and our notion of ecosystems, introduced. Chapter 3. The Future Does Not Exist. The philosophical core of the book, this chapter introduces process philosophy. Through an examination of the irreversible reality of subjectivity, Bergson’s famous notion of the durée reélle, and Whitehead’s critique of the bifurcation of subject and object, are introduced. The causally closed ‘time’ of positive science determines existence from the beginning to the end of the universe, be it three seconds or three trillion years. But the reality, of course, is that the future does not exist: our choices are real, and only one of myriad potential futures comes into being at each moment. As Bergson insists, durational succession exists, I am conscious of it; it is a fact. Bergson’s star – once the brightest of any living philosopher in the world – faded almost as quickly as it rose, under the onslaught from the logical positivists whose verificationism insisted that any proposition has no factual meaning if no evidence of observation can count for or against it: all ethics, aesthetics, romance, and metaphysics – and the very subjectivity with which duration is experienced - were thus closed down and dismissed. In this chapter it is reintroduced, to a new audience. Chapter 4. The World in a New Light. Many fundamental problems in the world can be seen as resulting from the false philosophy of bifurcation, fixity, and the reification of abstractions critiqued by process philosophy. Being – with all the isolation and focus upon the individual that it entails – must, if we are to address these problems, be seen as secondary to Becoming, with all the connection, interrelatedness, and complex collectivity that it implies. Choices become clearer, between positivism and interpretivism, between accents upon individualism or collectivism, between reductionist and complex adaptive systems approaches. The systemic individualism in Anglo-American societies can be regarded as actually harmful: the Tech Giants severing ties and bonds rather than connecting us; algebraic ecological models actually breaking the co-dependencies and co-requisites upon which real – complex - ecological health depends. Positivism, built as it is upon methodological individualism, seen in the light of process philosophy, becomes a danger to personal psychological balance – cutting us off from one another; a danger to the social fabric – undermining and impoverishing our civic life; and a danger to the ecological health of the planet – ignoring the immense (eco)systemic impact of our activities over the last centuries upon everything around us in the natural world. Chapter 5. A Theoretical Manifesto for Green IT. We are not islands, and in a process-relational social organisation much must be held in common. We are individuals, but we cannot survive alone. Four different perspectives on individualism show it to be little more than greed. An ecological economics reintegrating the household, the social, the supportive State, and – crucially – the life-giving earth into our polities is introduced and promoted. I introduce the concept of ‘Infomateriality’ – a non-bifurcated digital world where the physical bodies of people - fingers touching keyboards and eyes scanning screens - are as much ‘hardware’ as cabling, circuitboards and haptic interfaces, and the social practices, power relations, and embedded politics within IT artefacts define all such techné as fundamentally social. Abstract divisions are false, and whole, socially embedded systems should be the focus of IS, and from a philosophically and sociologically much deeper perspective. ‘Tech for Good’ is held up as movement in the right direction. My hope is that this book will help promote action, in the field of information systems, toward a better world, where Green Tech for Good is deployed for Nature, rather than against it. (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)

Very few attempts have been made to survey patient opinions, particularly regarding the use of residual biospecimens and health information in research, to clarify their values. We conducted a questionnaire survey that targeted outpatients of a university hospital to gauge their awareness levels and understand patient perspectives on research that uses these items. Few patients felt that obtaining individual consent for each research study was necessary. Most patients expressed the view that researchers should be obligated to inform them (...) about the research use of their items and be subject to self-directed rules. The research community should try to obtain “societal consent regarding an opt-out system” from the public. A salient value-sharing-based governance structure is necessary for obtaining public trust. (shrink)

Hastings Center Report, Volume 52, Issue 3, Page 2-2, May–June 2022.

There is growing interest in the use of technology to enhance the tracking and quality of clinical information available for patients in disaster settings. This paper describes the design and evaluation of the Wireless Internet Information System for Medical Response in Disasters (WIISARD).

Clinical information about patients is increasingly being stored in electronic form and has therefore become more easily shareable. Data are collected as part of clinical care but have multiple other potential uses in relation to health system planning, audit and research. The use of clinical information for these secondary uses is controversial, and the ability to safeguard personal and sensitive data under current practices is contested.In this study, we investigate the attitudes of a representative sample of the (...) Danish population towards transfer of clinical data from their general practice for secondary use. We specifically study: patients’ trust in different types of healthcare professionals, their interest in being asked about secondary use of data and their willingness to dispense from a requirement of informed consent based on their trust in healthcare professionals.We find that adult Danes are positive towards research that use patient data, and they generally trust general practitioners, hospitals and researchers to treat their data confidentially.Nevertheless, they feel that they have a right to control the use of their data, only 7.3% disagreeing, and that the data belong to them, only 14.0% disagreeing. Answers to further questions about the relation between trust, information and consent show that although trust modifies the wish for information and consent, there is still a strong view that the patient should control the use of data. We find no differences between those who have frequent contact with the healthcare system and those who do not. (shrink)

This paper looks at the cultural transformation of nursing. It argues that introducing computers in a female occupation is not simply a case of imposing ‘male’ technology on ‘female’ care-oriented practices and values. In order to understand current changes of nursing practice, three points of view have to be simultaneously kept in focus: 1) the differences between women's interests and ambitions; 2) the readings of a technology that have already been established through previous examples of design and use (in hospitals (...) up to date primarily for the purpose of establishing discipline and management control); and 3) the social practices that dominate a field of work (in the case of health work the already technology-driven cure aspect). (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)

To address the ethical challenges in big data health research we propose the concept of systemic oversight. This approach is based on six defining features and aims at creating a common ground across the oversight pipeline of biomedical big data research. Current trends towards enhancing granularity of informed consent and specifying legal provisions to address informational privacy and discrimination concerns in data-driven health research are laudable. However, these solutions alone cannot have the desired impact unless oversight activities by (...) different stakeholders acquire a common substantive orientation. (shrink)

The knowledge and information systems (KIS) perspective arose from reflections on agricultural development. In the health sector, it is not quite as common to think in terms of KIS. Yet in this complex field, in which health education and promotion play increasingly important roles, the KIS perspective might be very useful. In this article, the authors attempt to apply ideas about KIS and knowledge management to health, by paying attention to the historical development, especially of (...) public health, and by exploring the contribution these ideas could make to the field. Some of the observations made in this attempt are: upstream information flows often are developed poorly, interaction and exchange among the different KIS parties require ongoing stimulation, in special projects and complex communication situations, a system-integrator is needed. (shrink)

A consumer health information system must be able to comprehend both expert and non-expert medical vocabulary and to map between the two. We describe an ongoing project to create a new lexical database called Medical WordNet (MWN), consisting of medically relevant terms used by and intelligible to non-expert subjects and supplemented by a corpus of natural-language sentences that is designed to provide medically validated contexts for MWN terms. The corpus derives primarily from online health information sources (...) targeted to consumers, and involves two sub-corpora, called Medical FactNet (MFN) and Medical BeliefNet (MBN), respectively. The former consists of statements accredited as true on the basis of a rigorous process of validation, the latter of statements which non-experts believe to be true. We summarize the MWN / MFN / MBN project, and describe some of its applications. (shrink)

To give substance to the rhetoric of ‘learning health systems’, a variety of novel trial designs are being explored to more seamlessly integrate research with medical practice, reduce study duration and reduce the number of participants allocated to ineffective interventions. Many of these designs rely on response adaptive randomisation. However, critics charge that RAR is unethical on the grounds that it violates the principle of equipoise. In this paper, I reconstruct critiques of RAR as holding that it is (...) inconsistent with five important ethical principles. I then argue that these criticisms rest on a faulty view of equipoise encouraged by the idea that a RAR study models the beliefs of a single rational agent about the relative merits of the interventions being studied. I outline a view in which RAR models an idealised health system in which diverse communities of fully informed experts shrink or grow as their constituent members update their expert opinions in light of reliable medical evidence. I show how a proper understanding of clinical equipoise can reconcile this conception of RAR with these five ethical principles. This analysis removes an in-principle objection to RAR and sheds important light on the relationship between clinical equipoise and transient diversity in the scientific community. (shrink)