Existing ethics guidelines, influential literature and policies on ethical research generally focus on real-time data collection from humans. They enforce individual rights and liberties, thereby lowering need for aggregate protections. Although dependable, emerging public health research paradigms like research using public health data raise new challenges to their application. Unlike traditional research, RUPD is population-based, aligned to public health activities, and often reliant on pre-collected longitudinal data. These characteristics, when considered in relation to the generally lower protective (...) ethico-legal frameworks of the Global South, including Africa, highlight ethical gaps. Health and demographic surveillance systems are examples of public health programs that accommodate RUPD in these contexts. We set out to explore the perspectives of professionals with a working knowledge of these systems to determine practical ways of appropriating the foundational principles of health research to advance the ever growing opportunities in RUPD. We present their perspectives and in relation to the literature and our ethical analysis, make context relevant recommendations. We further argue for the development of a framework founded on the discussions and recommendations as a minimum base for achieving optimal ethics for optimal RUPD in the Global South. (shrink)

Background Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method Four community juries were convened in two demographically different Sydney municipalities and two regional cities (...) in New South Wales, Australia to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected. (shrink)

Data-sharing is a desired default in the field of public health and a source of much ethical deliberation. Sharing data potentially contributes the largest, most efficient source of scientific data, but is fraught with contextual challenges which make stakeholders, particularly those in under-resourced contexts hesitant or slow to share. Relatively little empirical research has engaged stakeholders in discussing the issue. This study sought to explore relevant experiences, contextual, and subjective explanations around the topic to provide a rich and detailed (...) presentation of what it means to different stakeholders and contexts to share data and how that can guide practice and ethical guidance. A qualitative design involving interviews was undertaken with professionals working in public health institutions endowed with data, ethics committees, and advisory agencies which help shape health research in Africa. A descriptive form of thematic analysis was used to summarize results into six key themes: The role of HDSSs in research using public health data and data-sharing; Ownership and funding are critical factors influencing data-sharing; Other factors discourage data-sharing; Promoting and sustaining data-sharing; Ethical guidance structures; and Establishing effective guidance. The themes reveal factors regarding the willingness or not to share and an intricate ethical system that current discourse could reflect. Many of the concerns resonate with the literature, but a whole other gamut of people and process issues; commitments, investments, careers, and the right ethical guidance are needed to realize a sustainable goal of reaching ‘share’ as a default. (shrink)

Anthropogenic climate change is causing temperature rise in temperate zones resulting in climate conditions more similar to subtropical zones. As a result, rising temperatures increase the range of disease-carrying insects to new areas outside of subtropical zones, and increased precipitation causes flooding that is more hospitable for vector breeding. State governments, the federal government, and governmental agencies, like the Animal and Plant Health Inspection Service of USDA and the National Notifiable Disease Surveillance System of the U.S. Centers for (...) Disease Control and Prevention, lack a coordinated plan for vector-borne disease accompanying climate change. APHIS focuses its surveillance primarily on the effect of illness on agricultural production, while NNDSS focuses on the emergence of pathogens affecting human health. This article provides an analysis of the current framework of surveillance of, and response to, vector-borne infectious diseases, the impacts of climate change on the spread of vector-borne infectious diseases, and recommends changes to federal law to address these threats. (shrink)

BackgroundVerbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the (...) ethical issues identified.MethodsThis research was based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers).ResultsThe use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers.ConclusionsThe collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy. (shrink)

BackgroundThe use of electronic nicotine delivery systems, also known as vaping, is becoming popular among young adults. Few studies have explored the psychological factors that predict ENDS use and susceptibility in young adults, in addition to known demographic predictors.MethodIn a cross-sectional survey design, 521 young adults, ages 18–25 from the United States, were recruited via Amazon’s Mechanical Turk in 2019, to answer an online survey measuring demographic characteristics and psychological characteristics related to mental health and the (...) Big Five personality traits. The survey also included measures of ENDS ever-use, current use, and susceptibility, which we predicted from the demographic and psychological measures using independent and multiple binary logistic regression analyses.ResultsOf those surveyed, 282 were ENDS ever-users, 93 were current ENDS users, and 61 were ENDS susceptible; 62 were current smokers. Demographically, young adults lower in adulthood socioeconomic-status, not pursuing education further than high school, and current smokers were more likely to be ENDS users. Psychologically, young adults higher in anxiety and lower in conscientiousness more likely to have ever-used ENDS. Lower conscientiousness further predicted current ENDS use and ENDS susceptibility.ConclusionIn this sample of MTurk workers, young adults with experience in vaping were more demographically and psychologically vulnerable than young adults with no experience in vaping. Young adults interested in vaping, but without prior experience, were less conscientious than their non-interested peers. Interventions to target vaping use should focus on economically disadvantaged young adults and those lower in conscientiousness. (shrink)

There is increasing concern about “surveillance capitalism,” whereby for-profit companies generate value from data, while individuals are unable to resist (Zuboff 2019). Non-profits using data-enabled surveillance receive less attention. Higher education institutions (HEIs) have embraced data analytics, but the wide latitude that private, profit-oriented enterprises have to collect data is inappropriate. HEIs have a fiduciary relationship to students, not a narrowly transactional one (see Jones et al, forthcoming). They are responsible for facets of student life beyond education. In (...) addition to classrooms, learning management systems, and libraries, HEIs manage dormitories, gyms, dining halls, health facilities, career advising, police departments, and student employment. HEIs collect and use student data in all of these domains, ostensibly to understand learner behaviors and contexts, improve learning outcomes, and increase institutional efficiency through “learning analytics” (LA). ID card swipes and Wi-Fi log-ins can track student location, class attendance, use of campus facilities, eating habits, and friend groups. Course management systems capture how students interact with readings, video lectures, and discussion boards. Application materials provide demographic information. These data are used to identify students needing support, predict enrollment demands, and target recruiting efforts. These are laudable aims. However, current LA practices may be inconsistent with HEIs’ fiduciary responsibilities. HEIs often justify LA as advancing student interests, but some projects advance primarily organizational welfare and institutional interests. Moreover, LA advances a narrow conception of student interests while discounting privacy and autonomy. Students are generally unaware of the information collected, do not provide meaningful consent, and express discomfort and resigned acceptance about HEI data practices, especially for non-academic data (see Jones et al. forthcoming). The breadth and depth of student information available, combined with their fiduciary responsibility, create a duty that HEIs exercise substantial restraint and rigorous evaluation in data collection and use. (shrink)

The public health measures implemented in response to the COVID-19 pandemic have resulted in a substantially increased shared reliance on private infrastructure and digital services in areas such as healthcare, education, retail, and the workplace. This development has (i) granted a number of private actors significant (informational) power, and (ii) given rise to a range of digital surveillance practices incidental to the pandemic itself. In this paper, we reflect on these secondary consequences of the pandemic and observe that, (...) even though collateral data disclosure and additional activity monitoring appears to have been generally socially accepted as inevitable consequences of the pandemic, part and parcel of a larger conglomeration of emergency compromises, these increased surveillance practices were not directly justified by appeals to solidarity and public health in the same way that the instigating public health measures were. Based on this observation, and given the increased reliance on private actors for maintaining the digital space, we argue that governments have a duty to (i) seek and ensure that there are justifications for collateral data disclosure and activity monitoring by private actors in the context of (future) public health emergencies like the COVID-19 pandemic, and (ii) regulate and provide accountability mechanisms for and oversight over these private surveillance practices on par with governmental essential services that engage in surveillance activities. (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 (...) 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)

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 (...) 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)

The European Union Data Protection Regulation will have profound implications for public health, health services research and statistics in Europe. The EU Commission's Proposal was a breakthrough in balancing privacy rights and rights to health and healthcare. The European Parliament, however, has proposed extensive amendments. This paper reviews the amendments proposed by the European Parliament Committee on Civil Liberties, Justice and Home Affairs and their implications for health research and statistics. The amendments eliminate most innovations brought (...) by the Proposal. Notably, derogation to the general prohibition of processing sensitive data shall be allowed for public interests such as the management of healthcare services, but not health research, monitoring, surveillance and governance. The processing of personal health data for historical, statistical or scientific purposes shall be allowed only with the consent of the data subject or if the processing serves an exceptionally high public interest, cannot be performed otherwise and is legally authorised. Research, be it academic, government, corporate or market research, falls under the same rule. The proposed amendments will make difficult or render impossible research and statistics involving the linkage and analysis of the wealth of data from clinical, administrative, insurance and survey sources, which have contributed to improving health outcomes and health systems performance and governance; and may illegitimise efforts that have been made in some European countries to enable privacy-respectful data use for research and statistical purposes. If the amendments stand as written, the right to privacy is likely to override the right to health and healthcare in Europe. (shrink)

The establishment of international sanitary institutions, which took place in the context of rivalry among the great European powers and their colonial expansion in Asia, allowed for the development of administrative systems of international epidemiological surveillance as a response to the cholera epidemics at the end of the nineteenth century. In this note, I reflect on how a historical analysis of the inception of international epidemiological surveillance and pandemic management helps us to understand what is happening in (...) the COVID-19 pandemic today. (shrink)

Federal, state, and local laws shape the use of health information for public health purposes, such as the mandated collection of data through electronic disease reporting systems. Health professionals can leverage these data to better anticipate and plan for the needs of communities, which is seen in the use of electronic case reporting.

Surveillance is essential for communicable disease prevention and control. Traditional notification of demographic and clinical information, about individuals with selected infectious diseases, allows appropriate public health action and is protected by public health and privacy legislation, but is slow and insensitive. Big data–based electronic surveillance, by commercial bodies and government agencies, which draws on a plethora of internet- and mobile device–based sources, has been widely accepted, if not universally welcomed. Similar anonymous digital sources also contain (...) syndromic information, which can be analysed, using customised algorithms, to rapidly predict infectious disease outbreaks, but the data are nonspecific and predictions sometimes misleading. However, public health authorities could use these online sources, in combination with de-identified personal health data, to provide more accurate and earlier warning of infectious disease events—including exotic or emerging infections—even before the cause is confirmed, and allow more timely public health intervention. Achieving optimal benefits would require access to selected data from personal electronic health and laboratory records and the potential to re-identify individuals found to be involved in outbreaks, to ensure appropriate care and infection control. Despite existing widespread digital surveillance and major potential community benefits of extending its use to communicable disease control, there is considerable public disquiet about allowing public health authorities access to personal health data. Informed public discussion, greater transparency and an ethical framework will be essential to build public trust in the use of new technology for communicable disease control. (shrink)

The accelerating adoption of electronic health record systems will have profound impacts on clinical care. It will also have far-reaching implications for public health research and surveillance, which in turn could lead to changes in public policy, statutes, and regulations. The public health benefits of EHR use can be significant. However, researchers and analysts who rely on EHR data must proceed with caution and understand the potential limitations of EHRs.Much has been written about the risk (...) of EHR privacy breaches. This paper focuses on a different set of concerns, those relating to data quality. Unlike clinical trial data, EHR data is not recorded primarily to meet the needs of researchers. Because of clinicians’ workloads, poor user-interface design, and other factors, EHR data is surprisingly likely to be erroneous, miscoded, fragmented, and incomplete. Although EHRs eliminate the problem of cryptic handwriting, other kinds of errors are more common with EHRs than with paper records. (shrink)

Libertarian views on rights tend to rule out coercive redistribution for purposes of public health care guarantees, whereas liberal conceptions support coercive funding of potentially unlimited access to medical services in the name of medical needs. Taking the “priority of liberty” seriously as supreme political value, a plausible prudential argument can avoid these extremes by providing systematic reasons for both delivering and limiting publicly financed guarantees. Given impending demographic change and rapid technical progress in medicine, only a two-tier (...) system with explicitly limited public guarantees and optional privately financed health services seems acceptable. (shrink)

"The Bush administration and Congress are in concert on the goal of developing a fleet of unmanned aircraft that can reduce both defense costs and aircrew losses in combat by taking on at least the most dangerous combat missions. Unmanned combat aerial vehicles (UCAVs) will be neither inexpensive enough to be readily expendable nor-- at least in early development-- capable of performing every combat mission alongside or in lieu of manned sorties. Yet the tremendous potential of such systems is (...) widely recognized, and allies as well as potential adversaries are moving quickly to mount their own research and development programs. The United States is committed to fielding UCAV capabilities by 2010, principally for the missions of suppression of enemy air defense and deep strike, which are among the highest risk tasks for the Air Force and naval aviation."--Overview. (shrink)

The sociological study of knowledge infrastructures and classification has traditionally focused on the politics and practices of classifying things or people. However, actors’ work to escape dominant infrastructures and pre-established classification systems has received little attention. In response to this, this article argues that it is crucial to analyze, not only the practices and politics of classification, but also actors’ work to escape dominant classification systems. The article has two aims: First, to make a theoretical contribution to the (...) study of classification by proposing to pay analytical attention to practices of escaping classification, what the article dubs classification egress. This concept directs our attention not only to the practices and politics of classifying things, but also to how actors work to escape or resist classification systems in practice. Second, the article aims to increase our understanding of the history of quantified and statistical health surveillance. In this, the article investigates how actors in health surveillance assembled a knowledge infrastructure for surveilling, quantifying, and detecting unknown patterns of congenital malformations in the wake of the thalidomide disaster in the early 1960s. The empirical account centers on the actors’ work to detect congenital malformations and escape the dominant nosological classification of diseases, the International Classification of Diseases (ICD), by replacing it with a procedural standard for reporting of symptoms. Thus, the article investigates how actors deal with the tension between the-already-known-and-classified and the unknown-unclassified-phenomenon in health surveillance practice. (shrink)

Both healthcare professionals and the healthcare system must defend each patient's health individually while simultaneously seeking to protect the population's health in general. Nowadays, there is an important increase in the cost of healthcare supply, mainly due to the developments of medical science, the public's expectations and the demographic ageing. Since healthcare resources are not unlimited, it is obvious that immoderate consumption of them by certain patients limits the use of the same funds by others. Therefore, we (...) have to seek an optimal distribution of the existing resources in order to manage a constriction of expenses, especially under the circumstances of the modern economic crisis. The criteria of effectiveness and efficiency should be used. Health policies focus on both the public's behaviour and the rules of medical practice. Under the modern challenges the physician's role is particularly important for the protection of the patient's health and the promotion of public health. (shrink)

Surveillance is a core function of all public health systems. Responses to the COVID-19 pandemic have deployed traditional public health surveillance responses, such as contact tracing and quarantine, and extended these responses with the use of varied technologies, such as the use of smartphone location data, data networks, ankle bracelets, drones, and big data analysis. Applying Foucault’s (1979) notion of the panopticon, with its twin focus on surveillance and self-regulation, as the preeminent form of (...) social control in modern societies, we examine the increasing levels of surveillance enacted during this pandemic and how people have participated in, and extended, this surveillance, self-regulation, and social control through the use of digital media. Consideration is given to how such surveillance may serve public health needs and/or political interests and whether the rapid deployment of these extensive surveillance mechanisms risks normalizing these measures so that they become more acceptable and then entrenched post-COVID-19. (shrink)

This article examines how digital epidemiology and eHealth coalesce into a powerful health surveillance system that fundamentally changes present notions of body and health. In the age of Big Data and Quantified Self, the conceptual and practical distinctions between individual and population body, personal and public health, surveillance and health care are diminishing. Expanding on Armstrong’s concept of “surveillance medicine” to “quantified self medicine” and drawing on my own research on the symbolic power (...) of statistical constructs in medical encounters, this article explores the impact of digital health surveillance on people’s perceptions, actions and subjectivities. It discusses the epistemic confusions and paradoxes produced by a health care system that increasingly treats patients as risk profiles and prompts them to do the same, namely to perceive and manage themselves as a bundle of health and security risks. Since these risks are necessarily constructed in reference to epidemiological data that postulate a statistical gaze, they also construct or make-up disembodied “individuals on alert”. (shrink)

Surveillance programs supporting the management of One Health issues such as antibiotic resistance are complex systems in themselves. Designing ethical surveillance systems is thus a complex task (retroactive and iterative), yet one that is also complicated to implement and evaluate (e.g., sharing, collaboration, and governance). The governance of health surveillance requires attention to ethical concerns about data and knowledge (e.g., performance, trust, accountability, and transparency) and empowerment ethics, also referred to as a form (...) of responsible self-governance. Ethics in reflexive governance operates as a systematic critical-thinking procedure that aims to define its value: What are the “right” criteria to justify how to govern “good” actions for a “better” future? The objective is to lay the foundations for a methodological framework in empirical bioethics, the rudiments of which have been applied to a case study to building reflexive governance in One Health. This ongoing critical thinking process involves “mapping, framing, and shaping” the dynamics of interests and perspectives that could jeopardize a “better” future. This paper proposes to hybridize methods to combine insights from collective deliberation and expert evaluation through a reflexive governance functioning as a community-based action-ethics methodology. The intention is to empower individuals and associations in a dialogue with society, which operation is carried out using a case study approach on data sharing systems. We based our reasoning on a feasibility study conducted in Québec, Canada (2018–2021), envisioning an antibiotic use surveillance program in animal health for 2023. Using the adaptive cycle and governance techniques and perspectives, we synthesize an alternative governance model rooted in the value of empowerment. The framework, depicted as a new “research and design (R&D)” practice, is linking operation and innovation by bridging the gap between Reflexive, Evaluative, and Deliberative reasonings and by intellectualizing the management of democratizing critical thinking locally (collective ethics) by recognizing its context (social ethics). Drawing on the literature in One Health and sustainable development studies, this article describes how a communitarian and pragmatic approach can broaden the vision of feasibility studies to ease collaboration through public-private-academic partnerships. The result is a process that “reassembles” the One Health paradigm under the perspective of global bioethics to create bridges between the person and the ecosystem through pragmatic ethics. (shrink)

Healthcare-associated infections due to multidrug-resistant organisms continue to increase in incidence. To control the transmission of these pathogens, such as methicillin-resistant Staphylococcus aureus , some have advocated active surveillance cultures of all hospitalized patients, followed by institution of contact precautions. While there has been extensive debate about the effectiveness of this approach in reducing infections, little attention has been given to the ethical issues raised by the intervention. Active surveillance for multidrug-resistant organisms is a quality improvement measure and (...) ethical implications arise through the potential to inadvertently cause harm. Unintended adverse effects may include decreased contact with healthcare workers, increased depression and anxiety, and increased rates of noninfectious adverse events among patients placed in contact precautions. The potential risks and benefits are not distributed fairly; patients placed in contact precautions are exposed to the risks, while those not isolated experience the benefit. Ethical challenges involve a conflict between the interests of the individual patient and the patient population not already colonized with the organism. For healthcare systems, active surveillance increases the complexity of bed management, exacerbating problems with patient placement, patient throughput, emergency department overcrowding and ambulance diversion for some hospitals. It also poses ethical dilemmas regarding societal resource allocation. Investing in an unproven or marginally beneficial quality improvement activity such as this must be balanced against other public health priorities competing for scarce resources. CiteULike Connotea Del.icio.us What's this? (shrink)

Contemporary infectious disease surveillance systems aim to employ the speed and scope of big data in an attempt to provide global health security. Both shifts - the perception of health problems through the framework of global health security and the corresponding technological approaches – imply epistemological changes, methodological ambivalences as well as manifold societal effects. Bringing current findings from social sciences and public health praxis into a dialogue, this conversation style contribution points out several (...) broader implications of changing disease surveillance. The conversation covers epidemiological issues such as the shift from expert knowledge to algorithmic knowledge, the securitization of global health, and the construction of new kinds of threats. Those developments are detailed and discussed in their impacts for health provision in a broader sense. (shrink)

Even as public health ethics was developing as a field, major incidents such as 9/11 and the SARS epidemic propelled discourse around public health emergency preparedness and response. Policy and practice shifted to a multidisciplinary approach, recognizing the broad range of potential threats to public health, including biological, physical, radiological, and chemical threats. This propelled the development of surveillance systems to detect incidents, laboratory capacities to rapidly test for potential threats, and therapeutic and social countermeasures (...) to prepare for and respond to a range of hazards. In bringing public health ethics and emergency preparedness together, Emergency Ethics: Public Health Preparedness and Response adds depth and complexity to both fields. As global threats continue to emerge, the book, edited by Bruce Jennings, John D. Arras, Drue H. Barrett, and Barbara A. Ellis, will offer a vital compass. (shrink)

The Institute of Medicine reporting on the quality of health care in America recommends six aims for achieving the health care system we could have. Together with the Institute for Healthcare Improvement Triple Aim initiative, a framework has emerged to challenge providers, educators, and policymakers to remake the health care system according to specific objectives: to provide care that is safe, effective, patient-centered, timely, efficient, and equitable to more people at a price we can afford. Complicating this (...) mission of better prevention and better care at a lower cost is a daunting demographic: January of 2011 marked the month and year that the first of the baby boomers turned 65. The U.S. Census Bureau in May 2010 projected the number of Americans of this age and over to reach 88 million by 2050, more than double the current figure of 40.2 million. Parekh and Barton forecast in stark detail what it will be like to address these burgeoning numbers of older Americans with comorbidities, including the fact that over 20% of the population currently experiences at least two chronic medical conditions. (shrink)

Lifestyle-induced diseases are becoming a burden on healthcare, actualizing the discussion on health responsibilities. Using data from the National Association for Heart and Lung Diseases ’s 2015 Health Survey, this study examined the public’s attitudes towards personal and social health responsibility in a Norwegian population. The questionnaires covered self-reported health and lifestyle, attitudes towards personal responsibility and the authorities’ responsibility for promoting health, resource-prioritisation and socio-demographic characteristics. Block-wise multiple linear regression assessed the association between (...) attitudes towards health responsibilities and individual lifestyle, political orientation and health condition. We found a moderate support for social responsibility across political views. Respondents reporting unhealthier eating habits, smokers and physically inactive were less supportive of health promotion policies. The idea that individuals are responsible for taking care of their health was widely accepted as an abstract ideal. Yet, only a third of the respondents agreed with introducing higher co-payments for treatment of ‘self-inflicted’ conditions and levels of support were patterned by health-related behaviour and left-right political orientation. Our study suggests that a significant support for social responsibility does not exclude a strong support for personal health responsibility. However, conditional access to healthcare based on personal lifestyle is still controversial. (shrink)

On April 1, 2001, I joined the world of Health Information Technology. I started a solo gynecology practice with no income and only expenses. I hired a medical assistant to be my front desk person and my clinical helper. I rented a smaller space than most physicians could use for this purpose because my plan was to use technology to avoid both chart storage as well as the people needed to maintain a medical record library.I hired a hospital employee (...) to put together my “network.” He helped me install my software and set up an automatic backup system. I purchased a single robust desktop computer and brought in an older computer from home for the front desk. I bought a scanner and an inexpensive laser printer. The hardware including a router for my “network” of two computers cost me about $6000. The software, a combined practice management system with an associated EMR requiring only single entry of patient demographics, cost me about $7000. (shrink)

Incidence and prevalence rates of dengue have increased over the years, and the disease is quickly becoming cause for concern within the public health community. Globally, 128 countries and slightly under four billion people are at risk of contracting dengue. In Sri Lanka, more than half of dengue cases originate in Colombo, which in previous years, used a manual pen-and-paper data management system, which meant that it was not possible to obtain or provide up-to-date information about the severity and (...) spread of dengue. In 2015, two versions of a mobile application called Mo-Buzz Dengue were developed and launched in Colombo, Sri Lanka in order to overcome the challenges of the traditional management system by capitalizing on the rising affordability and ubiquity of mobile phone technology. To keep up with the dynamic nature of disease outbreaks, real-time data need to be visualized in a manner which facilitates discerning and comprehending these patterns. Hence, we used health maps in Mo-Buzz to effectively present this information. The first version of Mo-Buzz was for public health inspectors, digitized data management as well as provided educational materials. The second version of Mo-Buzz was a source of information for the general public, a crowdsourcing platform to provide information relating to dengue transmission, and for health authorities to alert users to dengue-specific developments in their area. This paper illustrates the design considerations of the Mo-Buzz disease surveillance system for the general public. A draft scaled-down version of the PHI system was used to obtain feedback and make incremental design enhancements. Additionally, similar health maps were evaluated in terms of capability and usability. These findings were applied to identify future enhancements to the health map of Mo-Buzz Dengue. (shrink)

Since the outbreak of COVID-19, governments have turned their attention to digital contact tracing. In many countries, public debate has focused on the risks this technology poses to privacy, with advocates and experts sounding alarm bells about surveillance and mission creep reminiscent of the post 9/11 era. Yet, when Apple and Google launched their contact tracing API in April 2020, some of the world’s leading privacy experts applauded this initiative for its privacy-preserving technical specifications. In an interesting twist, the (...) tech giants came to be portrayed as greater champions of privacy than some democratic governments. This article proposes to view the Apple/Google API in terms of a broader phenomenon whereby tech corporations are encroaching into ever new spheres of social life. From this perspective, the advantage these actors have accrued in the sphere of the production of digital goods provides them with access to the spheres of health and medicine, and more worrisome, to the sphere of politics. These sphere transgressions raise numerous risks that are not captured by the focus on privacy harms. Namely, a crowding out of essential spherical expertise, new dependencies on corporate actors for the delivery of essential, public goods, the shaping of public policy by non-representative, private actors and ultimately, the accumulation of decision-making power across multiple spheres. While privacy is certainly an important value, its centrality in the debate on digital contact tracing may blind us to these broader societal harms and unwittingly pave the way for ever more sphere transgressions. (shrink)

Present regulations and prohibitions relating to psychoactive substances rest upon socio-historically contingent and hence arguably irrational foundations. New evidence bases located in post-genomic genetics and neuroscience hold the potential to disrupt them through demonstrating a lack of congruence between the regulations and prohibitions and the alleged and actual harms. How far might we use such knowledge to drive policy? What limits, if any, should be placed on our choices, and what attempts to influence these may be seen as acceptable? This (...) article seeks to address these questions in relation to criminal justice system and public health governance of psychoactive substance use. It will explore the implications of justifications employed in both areas to restrict free choice on the grounds of harm to the self and to others. The central argument made is that the current categorisation of psychoactive substances as lawful or unlawful is likely to become disrupted as the result of several separate discourses which converge over psychoactive substance use: enhancement, cognitive liberty and the degree to which subjective experiences of pleasure, well being and happiness might enable us to improve and maintain our health as individuals and that of society as a whole. In my view, the strategic deployment of concepts of addiction which has enabled the public health and criminal justice systems to be able to share governance over psychoactive substance use is likely to become destabilised by these discursive developments. In that policy in the United Kingdom and elsewhere now draws upon happiness research, while reformers advocate freedom of choice over means of enhancing our states of being, a new focus upon the rational evaluation of psychoactive substances governance seems plausible. (shrink)

The provision of police services and the suppression of crime is one of the first functions of civil government. Article 3 of the Universal Declaration of Human Rights speaks of a right to “security of person.” “The term ‘police’ traditionally connoted social organization, civil authority, or formation of a political community—the control and regulation of affairs affecting the general order and welfare of society,” including the protection of public health. Civil dispute resolution is also an important part of a (...) system that moves people away from self-help and toward reliance on collectively constituted, peaceful channels for working out problems.A safe and secure environment is tied to health. Research in social epidemiology suggests that a shared sense of security from physical violence and interference with property can contribute to better community health. (shrink)

The provision of police services and the suppression of crime is one of the first functions of civil government. Article 3 of the Universal Declaration of Human Rights speaks of a right to “security of person.” “The term ‘police’ traditionally connoted social organization, civil authority, or formation of a political community—the control and regulation of affairs affecting the general order and welfare of society,” including the protection of public health. Civil dispute resolution is also an important part of a (...) system that moves people away from self-help and toward reliance on collectively constituted, peaceful channels for working out problems.A safe and secure environment is tied to health. Research in social epidemiology suggests that a shared sense of security from physical violence and interference with property can contribute to better community health. (shrink)

The provision of police services and the suppression of crime is one of the first functions of civil government. Article 3 of the Universal Declaration of Human Rights speaks of a right to “security of person.” “The term ‘police’ traditionally connoted social organization, civil authority, or formation of a political community—the control and regulation of affairs affecting the general order and welfare of society,” including the protection of public health. Civil dispute resolution is also an important part of a (...) system that moves people away from self-help and toward reliance on collectively constituted, peaceful channels for working out problems.A safe and secure environment is tied to health. Research in social epidemiology suggests that a shared sense of security from physical violence and interference with property can contribute to better community health. (shrink)

In this paper, I argue that addressing the medical needs of older persons warrants expanding the array of insured services as described by the Canada Health Act to include home care. The growing importance of chronic care supports my call for federally regulated home care services as the nature of disease management has changed significantly in the last decades. In addition, if the values of equity, fairness and solidarity, which are the keystone values of the CHA, are to be (...) upheld within the current social and demographic context, then Canada’s health care system should adapt accordingly. I focus my argument on the services provided to older persons for two main reasons. First, the changing nature of disease management is best seen in this population. If it is to be successfully argued that the transformations in medicine warrant an expansion of insured services covered by the CHA, it will be best illustrated by looking at the needs of older persons. Second, with the demographic shift looming large in the policy agenda, an exploration of this issue is not only crucial but timely. (shrink)

This open access book is a systematic update of the philosophical and scientific foundations of the biopsychosocial model of health, disease and healthcare. First proposed by George Engel 40 years ago, the Biopsychosocial Model is much cited in healthcare settings worldwide, but has been increasingly criticised for being vague, lacking in content, and in need of reworking in the light of recent developments. The book confronts the rapid changes to psychological science, neuroscience, healthcare, and philosophy that have occurred since (...) the model was first proposed and addresses key issues such as the model’s scientific basis, clinical utility, and philosophical coherence. The authors conceptualise biology and the psychosocial as in the same ontological space, interlinked by systems of communication-based regulatory control which constitute a new kind of causation. These are distinguished from physical and chemical laws, most clearly because they can break down, thus providing the basis for difference between health and disease. This work offers an urgent update to the model’s scientific and philosophical foundations, providing a new and coherent account of causal interactions between the biological, the psychological and social. (shrink)

Individual differences in demographics, personality, and other related beliefs are associated with coronavirus disease 2019 threat beliefs. However, the relative contributions of these different types of individual differences to COVID-19 threat beliefs are not known. In this study, a total of 1,700 participants in Croatia completed a survey that included questions about COVID-19 risks, questions about related beliefs including vaccination beliefs, trust in the health system, trust in scientists, and trust in the political system, the HEXACO 60 personality inventory, (...) as well as demographic questions about gender, age, chronic diseases, and region. We used hierarchical regression analyses to examine the proportion of variance explained by demographics, personality, and other related beliefs. All three types of individual differences explained a part of the variance of COVID-19 threat beliefs, with related beliefs explaining the largest part. Personality facets explained a slightly larger amount of variance than personality factors. These results have implications for communication about COVID-19. (shrink)

Medicine and health are surprisingly separate. In the introduction to his 1963 master work on medical economics, Kenneth Arrow acknowledged that “the subject is the medical-care industry, not health.” In the 50 years that followed, researchers, policymakers, and public health professionals generated valuable and varied insights into health, impacting both behaviors and environments while addressing social determinants and demographic trends. Yet medical care has followed an even steeper upward trajectory, growing rapidly in scientific precision, public (...) esteem, and technical sophistication.As a result, the economic gap between the two domains has widened. The U.S. health care system spends almost $3 trillion annually. Preventive screening and early intervention bridge medical care and health, as do nutrition, behavioral health, aging, and a few other fields. But the money is overwhelmingly in medical care, particularly rescue care for those with acute illnesses or serious complications of chronic disease. (shrink)

The COVID-19 pandemic has been shaped by preexisting political, social, and economic relations and governance structures, and will remold these structures going forward. This review essay considers three books on global health politics written by Simon Rushton, Clare Wenham, and Jeremy Youde. Here, I explore what these books collectively and individually can tell us about these preexisting dynamics, the events of the first eighteen months of the COVID-19 pandemic, and possible future directions in the politics of global health. (...) I argue that they provide a firm basis for understanding the inequitable burdens of the pandemic, while juxtaposing these inequities against the narratives of shared vulnerability that sit at the heart of the global health security regime. They also help us make sense of the surveillance, detection, containment, and response mechanisms we have seen during the pandemic; the failures to address the systemic dynamics that drive disease outbreaks; and the national and international politics that have shaped the pandemic response. However, COVID-19 has also vividly and brutally demonstrated how global health hierarchies, racism, border politics, and neoliberal forms of knowledge production have led to a stratified burden of the pandemic. These areas are less apparent in the three books, but ought to be situated front and center in future critical scholarship on global health security. (shrink)

In 2005, The International Federation of Organic Agricultural Movements (IFOAM) developed four new ethical principles of organic agriculture to guide its future development: the principles of health, ecology, care, and fairness. The key distinctive concept of animal welfare in organic agriculture combines naturalness and human care, and can be linked meaningfully with these principles. In practice, a number of challenges are connected with making organic livestock systems work. These challenges are particularly dominant in immature agro-ecological systems, for (...) example those that are characterized by industrialization and monoculture. Some of the current challenges are partly created by shortages of land and manure, which encourage zero-grazing and other confined systems. Other challenges are created in part by the conditions for farming and the way in which global food distribution systems are organized, e.g., how live animals are transported, how feed is traded and transported all over the globe, and the development of infrastructure and large herds. We find that the overall organic principles should be included when formulating guidelines for practical organic animal farming. This article explores how the special organic conceptions of animal welfare are related to the overall principles of organic agriculture. The aim is to identify potential routes for future development of organic livestock systems in different contexts and with reference to the specific understanding of animal welfare in organic agriculture. We include two contrasting cases represented by organic livestock systems in northwestern Europe and farming systems in tropical low-income countries; we use these cases to explore the widely different challenges of organic livestock systems in different parts of the world. (shrink)

We use a cultural psychology approach to examine the relevance of the Health Belief Model for predicting a variety of behaviors that had been recommended by health officials during the initial stages of the COVID-19 lockdown for containing the spread of the virus and not overburdening the health system in Europe. Our study is grounded in the assumption that health behavior is activated based on locally relevant perceptions of threats, susceptibility and benefits in engaging in protective (...) behavior, which requires careful attention to how these perceptions might be structured and activated. We assess the validity of the HBM in two European countries that have been relatively understudied, using simultaneous measurements during acute periods of infection in Romania and Italy. An online questionnaire provided a total of valid answers from both countries. First, to understand individual difference patterns within and across populations, we fit a General Linear Model in which endorsement was predicted by behavior, country, their interaction, and a random effect for participants. Second, we assess the effect of demographics and health beliefs on prevention behaviors by fitting a multi-group path model across countries, in which each behavior was predicted by the observed health belief variables and demographics. Health beliefs showed stronger relationships with the recommended behaviors than demographics. Confirming previously reported relationships, self-efficacy, perceived severity, and perceived benefits were consistently related to the greater adoption of individual behaviors, whereas greater perceived barriers were related to lower adoption of health behaviors. However, we also point to important location specific effects that suggest that local norms shape protective behavior in highly contextualized ways. (shrink)

The article summarizes the theoretical and methodological knowledge about ecotourism as one of the viable types of tourism in the postmodern era, clarifies the patterns of its formation and development, a variety of approaches to its interpretation, interaction with other types of tourism, features of motivation and management in ecotourism. On the basis of the generalized data a number of perspective educational conditions is modeled: the orientation of the maintenance of pedagogical education on formation of steady positive motivation; updating the (...) content of professional training; availability of educational and methodical support; interrelation of competence, system and personal-activity approaches. Diagnostic methods relevant for postmodern education are selected: methods of diagnosing students' learning motivation; methods of diagnosis of value orientations in career; tests to determine the levels of formation of the components of professional competence. It is proved that the professional training of teachers who are able to use ecological tourism in their professional activities at a high level is one of the important conditions for increasing the interest of children and young people in physical education, tourism and sports, ensuring the necessary physical activity, developing, maintaining and strengthening their health, adaptation to the flexible postmodern society. (shrink)

Drug regulatory bodies aim to ensure that patients have access to safe and effective drugs; however, no matter the quality of pre-licensure studies, uncertainty will remain regarding the safety and effectiveness of newly approved drugs until a large and diverse population uses those drugs. Recent analyses of Canada’s post-market drug surveillance system have found that Canada is not keeping pace with international requirements for PMDS, and have noted that efforts must be improved to monitor and address the safety and (...) effectiveness of approved drugs among vulnerable populations. Given the uncertainty that exists when drugs enter the market, some have suggested that the precautionary principle is relevant to guiding decision-making in this context. This paper responds to recommendations that the Canadian PMDS system should be responsive to the health needs of vulnerable populations by assessing the utility of deploying the precautionary principle to guide a post-market strategy for vulnerable populations. (shrink)

In an increasingly globalized world, the accessibility of healthcare and medication has expanded beyond local healthcare systems and national borders. This study aims to investigate the transnational health and self-care experiences of 11 Japanese women who have resided in South Korea for a minimum of six months and have utilized oral contraceptives, including those that were acquired over-the-counter (OTC). Data were gathered through semi-structured interviews and analyzed by utilizing the NVivo software. The analysis yielded three significant thematic categories, (...) namely (1) experiences and perceptions of obtaining and utilizing contraceptive pills, including OTC access; (2) individual and social perceptions of pills and their accessibility in Japan, insights from actual users; and (3) enhancing pill accessibility, transnational health and self-care experiences and perspectives. Participants acknowledged that oral contraceptives are a global product and experienced communication challenges with healthcare providers as a result of differing understandings of these medications. Additionally, this study identified transnational strategies, such as purchasing an adequate supply of pills just before departure and seeking pills from local families or acquaintances. This study not only highlights the implications of clinical care for transnational patients but also underscores their critical global perspectives on access to oral contraceptives. Furthermore, it proposes two models for improving accessibility within the Japanese healthcare system, even in prescription-only contexts, by introducing OTC options. (shrink)