The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant (...) consent waivers when research is judged to be of particular value. However, several different terms are used to refer to this value, indicating a lack of conceptual clarity regarding the appropriate test for access to health data for research without consent. In this paper we do three things. First we describe the current confusion and instability in terminology relating to public interest in the context of consent waivers. Second we argue for harmonisation of terminology on the grounds of clarity, transparency and consistency. Third we argue that the term ‘public interest’ best reflects the normative work required to justify consent waivers because it is the broadest of the competing terms. ‘Public interest’ contains within its scope positive and negative implications of a study, as well as welfare, justice and rights considerations. In making this argument, we explain the normative basis for consent waivers, and provide a starting place for further discussion about the precise conditions in which a given study can be said to advance the public interest. Ipsos MORI study found that: … the public would be broadly happy with administrative data linking for research projects provided Those projects have social value, broadly defined. Data are de-identified. Data are kept secure. Businesses are not able to access the data for profit. (shrink)

The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. (...) As such, for some studies the Institutional Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency. (shrink)

Researchers and practitioners are increasingly using machine‐generated synthetic data as a tool for advancing health science and practice, by expanding access to health data while—potentially—mitigating privacy and related ethical concerns around data sharing. While using synthetic data in this way holds promise, we argue that it also raises significant ethical, legal, and policy concerns, including persistent privacy and security problems, accuracy and reliability issues, worries about fairness and bias, and new regulatory challenges. The virtue (...) of synthetic data is often understood to be its detachment from the data subjects whose measurement data is used to generate it. However, we argue that addressing the ethical issues synthetic data raises might require bringing data subjects back into the picture, finding ways that researchers and data subjects can be more meaningfully engaged in the construction and evaluation of datasets and in the creation of institutional safeguards that promote responsible use. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by (...) the Science, Health and Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating (...) to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

Health data processing fields face ethical and legal problems regarding fundamental rights. As we know, patients can benefit in the Digital Era from having health or medical information available, and medical decisions can be more effective with a better understanding of clinical histories, medical and health data thanks to the development of Artificial Intelligence, Internet of Things and other Digital technologies. However, at the same time, we need to guarantee fundamental rights, including privacy ones. The (...) complaint about ethical and legal requirements – including constitutional ones – is particularly relevant in the processing of health data. This paper is focused on the problem of the consent required to the processing of health data and the exceptions established in the new European Union General Data Regulation, which cover the processing of this special data -within other aims- for scientific, historical and statistical research as legitimate purposes, which include biomedical research. The conclusion is that these open concepts are problematic both for the protection of privacy rights and for the legal security/certainty of research. On one hand there are several interpretation problems, regarding the processing of health data and the protection of information privacy. On the other hand, professionals must follow the Multilevel legal framework and to guarantee fundamental rights in the processing of health data, so there are also problems of interpretation for researchers. Therefore, we need a clearer legal framework for biomedical research. (shrink)

Background Several jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using secondary health data or tissue. However, the concept of the public interest is not well defined in this context, which creates difficulties for institutions, institutional review boards and regulators trying to implement the criterion. Main text This paper clarifies how the public interest criterion can be defensibly deployed. We (...) first explain the ethical basis for requiring waivers to only be granted to studies meeting the public interest criterion, then explore how further criteria may be set to determine the extent to which a given study can legitimately claim to be in the public interest. We propose an approach that does not attempt to measure magnitude of benefit directly, but rather takes into account metrics that are more straightforward to apply. To ensure consistent and justifiable interpretation, research institutions and IRBs should also incorporate procedural features such as transparency and public engagement in determining which studies satisfy the public interest requirement. Conclusion The requirement of public interest for consent waivers in secondary biomedical research should be guided by well-defined criteria for systematic evaluation. Such a criteria and its application need to be periodically subject to intra-committee and intra-institution review, reflection, deliberation and amendment. (shrink)

Wearable devices are increasingly present in the health context, as tools for biomedical research and clinical care. In this context, wearables are considered key tools for a more digital, personalised, preventive medicine. At the same time, wearables have also been associated with issues and risks, such as those connected to privacy and data sharing. Yet, discussions in the literature have mostly focused on either technical or ethical considerations, framing these as largely separate areas of discussion, and the (...) contribution of wearables to the collection, development, application of biomedical knowledge has only partially been discussed. To fill in these gaps, in this article we provide an epistemic (knowledgerelated) overview of the main functions of wearable technology for health: monitoring, screening, detection, and prediction. On this basis, we identify 4 areas of concern in the application of wearables for these functions: data quality, balanced estimations, health equity, and fairness. To move the field forward in an effective and beneficial direction, we present recommendations for the 4 areas: local standards of quality, interoperability, access, and representativity. (shrink)

In this essay, we advocate that the issue of health data ethics should no longer be considered on the level of individual scientists or research labs, but rather as a problem involving all stakeholders, from publishers, funders, ethical committees to governments, for the sake of research integrity.

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster (...) posthumous medical data donation. Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code. (shrink)

All too often, the requirements for actionability and accountability of data infrastructures are conceptualised as incompatible and leading to a trade-off situation where increasing one will unavoidably decrease the other. Through a comparative analysis of two data infrastructures used to share genomic data about the SARS-COV-2 virus, we argue that making data actionable for knowledge development involves a commitment to ensuring that the data in question are representative of the phenomena being studied and accountable to (...) data subjects and users. This in turn presupposes that: (1) enough data are contributed by a wide and diverse set of relevant sources; (2) mechanisms of feedback and inclusion are set up to ensure that data contributors can participate data governance and interpretation, thereby helping to adequately contextualise data; and (3) accountability extends to the ways in which data infrastructures are run, financed and positioned vis-à-vis the communities they are meant to serve. Such a model of data sharing can only work on the understanding that data do not need to be easily accessible to be actionable; rather, actionability depends on the responsiveness and accountability of data infrastructures, and the efforts invested in ensuring open communication among contributors. (shrink)

In this paper, we analyse the relation between the use of environmental data in contemporary health sciences and related conceptualisations and operationalisations of the notion of environment. We consider three case studies that exemplify a different selection of environmental data and mode of data integration in data-intensive epidemiology. We argue that the diversification of data sources, their increase in scale and scope, and the application of novel analytic tools have brought about three significant conceptual (...) shifts. First, we discuss the EXPOsOMICS project, an attempt to integrate genomic and environmental data which suggests a reframing of the boundaries between external and internal environments. Second, we explore the MEDMI platform, whose efforts to combine health, environmental and climate data instantiate a reframing and expansion of environmental exposure. Third, we illustrate how extracting epidemiological insights from extensive social data collected by the CIDACS institute yields innovative attributions of causal power to environmental factors. Identifying these shifts highlights the benefits and opportunities of new environmental data, as well as the challenges that such tools bring to understanding and fostering health. It also emphasises the constraints that data selection and accessibility pose to scientific imagination, including how researchers frame key concepts in health-related research. (shrink)

Most public and non-profit organisations that fund health research provide the majority of their funding in the form of grants. The calls for grant applications are often untargeted, such that a wide variety of applications may compete for the same funding. The grant review process therefore plays a critical role in determining how limited research resources are allocated. Despite this, little attention has been paid to whether grant review criteria align with widely endorsed ethical criteria for allocating (...) health research resources. Here, we analyse the criteria and processes that ten of the largest public and non-profit research funders use to choose between competing grant applications. Our data suggest that research funders rarely instruct reviewers to consider disease burden or to prioritise research for sicker or more disadvantaged populations, and typically only include scientists in the review processes. This is liable to undermine efforts to link research funding to health needs. (shrink)

This approach significantly enhances patient care by minimizing delays in response and improving overall health outcomes. The system's architecture, based on big data frameworks, supports scalable and efficient data processing. The study demonstrates how the integration of predictive models and data visualization tools can revolutionize health alert systems, making them more responsive and adaptive to individual patient needs. Future enhancements will focus on incorporating machine learning models for more personalized predictions and extending the system's capabilities (...) to remote patient care. (shrink)

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

Artificial intelligence is now widely accessible and already being used by healthcare researchers throughout various stages in the research process, such as assisting with systematic reviews, supporting data collection, facilitating data analysis and drafting manuscripts for publication. The most common AI tools used are forms of generative AI such as ChatGPT, Claude and Gemini. Generative AI is a type of AI that can generate human-like text, audio, videos, code and images based on text-based prompts inputted by a (...) human user. Generative AI is trained on large amounts of data, and the outputs are sophisticated and can be indistinguishable from a response from a skilled human. In this article, we outline several AI applications that can be used in healthcare research, examining their benefits, limitations and outline best practices for maintaining research integrity and ethical standards. (shrink)

In times of crises, public health leaders may claim that trials of public health interventions are unethical. One reason for this claim can be that equipoise—i.e. a situation of uncertainty and/or disagreement among experts about the evidence regarding an intervention—has been disturbed by a change of collective expert views. Some might claim that equipoise is disturbed if the majority of experts believe that emergency public health interventions are likely to be more beneficial than harmful. However, such beliefs (...) are not always justified: where high quality research has not been conducted, there is often considerable residual uncertainty about whether interventions offer net benefits. In this essay we argue that high-quality research, namely by means of well-designed randomized trials, is ethically obligatory before, during, and after implementing policies in public health emergencies (PHEs). We contend that this standard applies to both pharmaceutical and non-pharmaceutical interventions, and we elaborate an account of equipoise that captures key features of debates in the recent pandemic. We build our case by analyzing research strategies employed during the COVID-19 pandemic regarding drugs, vaccines, and non-pharmaceutical interventions; and by providing responses to possible objections. Finally, we propose a public health policy reform: whenever a policy implemented during a PHE is not grounded in high-quality evidence that expected benefits outweigh harms, there should be a planned approach to generate high-quality evidence, with review of emerging data at preset time points. These preset timepoints guarantee that policymakers pause to review emerging evidence and consider ceasing ineffective or even harmful policies, thereby improving transparency and accountability, as well as permitting the redirection of resources to more effective or beneficial interventions. (shrink)

The translational research community, in general, and the Clinical and Translational Science Awards (CTSA) community, in particular, share the vision of repurposing EHRs for research that will improve the quality of clinical practice. Many members of these communities are also aware that electronic health records (EHRs) suffer limitations of data becoming poorly structured, biased, and unusable out of original context. This creates obstacles to the continuity of care, utility, quality improvement, and translational research. Analogous limitations (...) to sharing objective data in other areas of the natural sciences have been successfully overcome by developing and using common ontologies. This White Paper presents the authors’ rationale for the use of ontologies with computable semantics for the improvement of clinical data quality and EHR usability formulated for researchers with a stake in clinical and translational science and who are advocates for the use of information technology in medicine but at the same time are concerned by current major shortfalls. This White Paper outlines pitfalls, opportunities, and solutions and recommends increased investment in research and development of ontologies with computable semantics for a new generation of EHRs. (shrink)

In Québec, the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information provides an exception to transparency to most public institutions where public health research is conducted by allowing them to not disclose their uses of personal data. This exceptionalism is ethically problematic due to important concerns and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and (...) consumers may be rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols. (shrink)

Human rights may feel self-apparent to us, but less than 80 years ago, one of the most advanced countries at the time acted based on an utterly contrary ideology. The view of social Darwinism that abandoned the idea of the intrinsic value of human lives instead argued that oppression of the inferior is not only inevitable but desirable. One of the many catastrophic outcomes is the medical data obtained from inhuman experiments at concentration camps. Ethical uncertainty over whether the (...) resulting insights should be a part of the medical literature provides a chance to consider the seemingly irreplaceable social construct of human dignity. Would any medical benefit justify the utilization of this illicit data? Would utilization even qualify as an insult to the dignity of the exploited subjects, or is this a question about intersubjective meaning? This work discusses the wisdom in blind adherence to human dignity, the possibility of retrospective insults, moral complicity, contrary viewpoints, and possible resolutions. (shrink)

This article identifies and examines a tension in mental health researchers’ growing enthusiasm for the use of computational tools powered by advances in artificial intelligence and machine learning (AI/ML). Although there is increasing recognition of the value of participatory methods in science generally and in mental health research specifically, many AI/ML approaches, fueled by an ever-growing number of sensors collecting multimodal data, risk further distancing participants from research processes and rendering them as mere vectors or (...) collections of data points. The imperatives of the “participatory turn” in mental health research may be at odds with the (often unquestioned) assumptions and data collection methods of AI/ML approaches. This article aims to show why this is a problem and how it might be addressed. (shrink)

A recent systematic review of Machine Learning (ML) approaches to health data, containing over 100 studies, found that the most investigated problem was mental health (Yin et al., 2019). Relatedly, recent estimates suggest that between 165,000 and 325,000 health and wellness apps are now commercially available, with over 10,000 of those designed specifically for mental health (Carlo et al., 2019). In light of these trends, the present chapter has three aims: (1) provide an informative overview (...) of some of the recent work taking place at the intersection of text mining and mental health so that we can (2) highlight and analyze several pressing ethical issues that are arising in this rapidly growing field and (3) suggest productive directions for how these issues might be better addressed within future interdisciplinary work to ensure the responsible development of text mining approaches in psychology generally, and in mental health fields, specifically. In Section 1, we review some of the recent literature on text-mining and mental health in the contexts of traditional experimental settings, social media, and research involving electronic health records. Then, in Section 2, we introduce and discuss ethical concerns that arise before, during, and after research is conducted. Finally, in Section 3, we offer several suggestions about how ethical oversight of text-mining research might be improved to be more responsive to the concerns mapped out in Section 2. (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)

This chapter provides a high-level overview of key ethical issues raised by the use of surveillance technologies, such as digital contact tracing, disease surveillance, and vaccine passports, to combat the COVID-19 pandemic. To some extent, these issues are entirely familiar. I argue that they raise old questions in new form and with new urgency, at the intersection of information ethics, research ethics, and public health. Whenever we deal with data-driven technologies, we have to ask how they fare (...) in relation to important values like privacy, fairness, transparency, and accountability—values emphasized by information ethics scholars. Likewise, when such technologies put individuals at risk in order to drive scientific research and knowledge construction, we have to ask how they implicate values such as autonomy, beneficence and non-maleficence, and justice—values central to research ethics. And as researchers focusing on health information have long argued, when the data collected by these technologies pertain to individuals and public health, these ethical issues take on a special cast. -/- It is also true, however, that the pandemic has placed these questions in a new and revealing light. I highlight three insights from information ethics and research ethics that can help us navigate this difficult terrain. First, the value of privacy is instrumental, not absolute—there is nothing wrong with asking how to balance privacy against other important values. Second, privacy has both individual and social importance. Weighing privacy, on one hand, and public health, on the other, is not, therefore, a contest between individual and collective interests. Rather, it is an attempt to balance disparate public goods. Third, we ought to put these kinds of ethical decisions in the hands of third parties, rather than leaving them up to those who directly stand to benefit from them. In the case of pandemic surveillance technologies, this should mean more public, democratic oversight. (shrink)

Climate change, pollution, and deforestation have a negative impact on global mental health. There is an environmental justice dimension to this challenge as wealthy people and high-income countries are major contributors to climate change and pollution, while poor people and low-income countries are heavily affected by the consequences. Using state-of-the art data mining, we analyzed and visualized the global research landscape on mental health, climate change, pollution and deforestation over a 15-year period. Metadata of papers were (...) exported from PubMed®, and both relevance and relatedness of terms in different time frames were computed using VOSviewer. Co-occurrence graphs were used to visualize results. The development of exemplary terms over time was plotted separately. The number of research papers on mental health and environmental challenges is growing in a linear fashion. Major topics are climate change, chemical pollution, including psychiatric medication in wastewater, and neurobiological effects. Research on specific psychiatric syndromes and diseases, particularly on their ethical and social aspects is less prominent. There is a growing body of research literature on links between mental health, climate change, pollution, and deforestation. This research provides a graphic overview to mental healthcare professionals and political stakeholders. Social and ethical aspects of the climate change-mental health link have been neglected, and more research is needed. (shrink)

The increasing prevalence of mental health issues, particularly stress, has necessitated the development of data-driven, interpretable machine learning models for early detection and intervention. This study leverages multimodal data, including activity levels, perceived stress scores (PSS), and event counts, to predict stress levels among individuals. A series of models, including Logistic Regression, Random Forest, Gradient Boosting, and Neural Networks, were evaluated for their predictive performance. Results demonstrated that ensemble models, particularly Random Forest and Gradient Boosting, performed significantly (...) better compared to Logistic Regression. Random Forest achieved an accuracy of 73%, while Gradient Boosting delivered a balanced precision-recall tradeoff with an accuracy of 72%. Gradient Boosting outperformed in identifying high-stress instances, achieving a recall of 70%, making it the most reliable model for stress prediction. Explainable AI (XAI), which refers to the ability of machine learning models to provide transparent and understandable explanations for their predictions, was employed in this study using SHAP (SHapley Additive exPlanations). SHAP values revealed that Perceived Stress Score (PSS) had the most significant impact on predictions, followed by event count and activity inference. Higher PSS scores strongly correlated with high-stress predictions, while increased event counts and activity levels were associated with lower stress. These findings underscore the importance of incorporating behavioral patterns in stress diagnostics and highlight the utility of explainable models in improving transparency, trust, and usability for clinical decision-making. This research establishes a robust foundation for deploying interpretable machine learning systems to support mental health diagnostics and enhance clinician decision support. (shrink)

In recent years, the growing academic field called “Data Science” has made many promises. On closer inspection, relatively few of these promises have come to fruition. A critique of Data Science from the phenomenological tradition can take many forms. This paper addresses the promise of “participation” in Data Science, taking inspiration from Paul Majkut’s 2000 work in Glimpse, “Empathy’s Impostor: Interactivity and Intersubjectivity,” and some insights from Heidegger’s "The Question Concerning Technology." The description of Data Science (...) provided in the scholarly literature includes “the study of the generalizable extraction of knowledge from data” (Dhar 2013, 64), “data stewardship and data sharing…access to data at higher volumes and more quickly, and the potential for replication and augmentation of existing research” (Hartter et al., 2013, 1), and “personal information, health status, daily activities and shopping preferences that are recorded and used to give us instant feedback and recommendations based on previous online behavior.” (Shin 2013) United States universities have begun to offer graduate programs in “data science”, anticipating the growth of this field for marketing, national security, and health industries. These universities include New York University, Columbia University, Stanford, Northwestern, and Syracuse. (shrink)

The current global health situation (primarily as a result of Covid-19) has fostered a change in customer behaviour towards the use of telecommunications services, which has led to an increase in data traffic. As a result of this change, telecommunications operators have a golden opportunity to create new sources of revenue by utilising Big Data Analytics (BDA) solutions. In the process of establishing a BDA project, we encountered a number of obstacles, the most significant of which were (...) the selection of the technological solution from among the vast array of tools that were already available, as well as the selection of the governance methodology that would be used to control both the project and the data. The vast majority of study materials that pertain to the telecommunications industry have not addressed the implementation of BDA projects from the beginning to the end. The goal of this study is to concentrate on a BDA telecommunications project, specifically the governance of the project, the architecture of the project, the governance of the data, and the team working on the BDA project. Utilisable BDA use cases are presented in the final section of this study. These use cases are presented in terms of applications that enable income generating and cost optimisation. It would appear that this effort will make it easier to implement BDA projects and will provide telecoms operators with the ability to have a better understanding of the fundamental components that need to be focused on. (shrink)

This paper focuses on Precision Public Health (PPH), described in the scientific literature as an effort to broaden the scope of precision medicine by extrap- olating it towards public health. By means of the “All of Us” (AoU) research pro- gram, launched by the National Institutes of Health in the U.S., PPH is being devel- oped based on health data shared through a broad range of digital tools. PPH is an emerging idea to harness (...) the data collected for precision medicine to be able to tai- lor preventive interventions for at-risk groups. The character of these data concern genetic identity, lifestyle and overall health and therefore affect the ‘intimacy’ of personhood. Through the concept of biological citizenship, we elucidate how AoU and its recruitment tactics, by resonating ‘diversity’, at the same time appeal to and constitute identity, defining individuals as ‘data sharing subjects’. Although PPH is called for; the type of bio-citizenship that is enacted here, has a particular definition, where participant recruitment focuses on ‘citizenship’ in terms of empowerment (front), it is the ‘bio’ prefix that has become the main focus in terms of research. i.e. biosubjectivities vs biocapital. This raises the question whether the societal chal- lenges that often underlie public health issues can be sufficiently dealt with based on the way ‘diversity’ is accounted for in the program. We suggest that the AoU still risks of harming underrepresented groups based on the preconditions and the design of the program. (shrink)

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these are (...) discussed. The system / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient’s identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations. (shrink)

Ontologies are being ever more commonly used in biomedical informatics and we provide a survey of some of these uses, and of the relations between ontologies and other terminology resources. In order for ontologies to become truly useful, two objectives must be met. First, ways must be found for the transparent evaluation of ontologies. Second, existing ontologies need to be harmonised. We argue that one key foundation for both ontology evaluation and harmonisation is the adoption of a realist paradigm in (...) ontology development. For science-based ontologies of the sort which concern us in the eHealth arena, it is reality that provides the common benchmark against which ontologies can be evaluated and aligned within larger frameworks. Given the current multitude of ontologies in the biomedical domain the need for harmonisation is becoming ever more urgent. We describe one example of such harmonisation within the ACGT project, which draws on ontology-based computing as a basis for sharing clinical and laboratory data on cancer research. (shrink)

PURPOSE—A substantial fraction of the observations made by clinicians and entered into patient records are expressed by means of negation or by using terms which contain negative qualifiers (as in “absence of pulse” or “surgical procedure not performed”). This seems at first sight to present problems for ontologies, terminologies and data repositories that adhere to a realist view and thus reject any reference to putative non-existing entities. Basic Formal Ontology (BFO) and Referent Tracking (RT) are examples of such paradigms. (...) The purpose of the research here described was to test a proposal to capture negative findings in electronic health record systems based on BFO and RT. METHODS—We analysed a series of negative findings encountered in 748 sentences taken from 41 patient charts. We classified the phenomena described in terms of the various top-level categories and relations defined in BFO, taking into account the role of negation in the corresponding descriptions. We also studied terms from SNOMED-CT containing one or other form of negation. We then explored ways to represent the described phenomena by means of the types of representational units available to realist ontologies such as BFO. RESULTS—We introduced a new family of ‘lacks’ relations into the OBO Relation Ontology. The relation lacks_part, for example, defined in terms of the positive relation part_of, holds between a particular p and a universal U when p has no instance of U as part. Since p and U both exist, assertions involving ‘lacks_part’ and its cognates meet the requirements of positivity. CONCLUSION—By expanding the OBO Relation Ontology, we were able to accommodate nearly all occurrences of negative findings in the sample studied. (shrink)

Most people are completely oblivious to the danger that their medical data undergoes as soon as it goes out into the burgeoning world of big data. Medical data is financially valuable, and your sensitive data may be shared or sold by doctors, hospitals, clinical laboratories, and pharmacies—without your knowledge or consent. Medical data can also be found in your browsing history, the smartphone applications you use, data from wearables, your shopping list, and more. At (...) best, data about your health might end up in the hands of researchers on whose good will we depend to avoid abuses of power.2 Most likely, it will end up with data brokers who might sell it to a future employer, or an insurance company, or the government. At worst, your medical data may end up in the hands of criminals eager to commit extortion or identity theft. In addition to data harms related to exposure and discrimination, the collection of sensitive data by powerful corporations risks the creation of data monopolies that can dominate and condition access to health care. -/- This chapter aims to explore the challenge that big data brings to medical privacy. Section I offers a brief overview of the role of privacy in medical settings. I define privacy as having one’s personal information and one’s personal sensorial space (what I call autotopos) unaccessed. Section II discusses how the challenge of big data differs from other risks to medical privacy. Section III is about what can be done to minimise those risks. I argue that the most effective way of protecting people from suffering unfair medical consequences is by having a public universal healthcare system in which coverage is not influenced by personal data (e.g., genetic predisposition, exercise habits, eating habits, etc.). (shrink)

The major objective of this study was to investigate whether visual impairments (VI) impact mental health literacy among first-generation university students (FGUS). A descriptive survey research method was used to examine the mental health literacy of 132 purposive sample of FGUS with and without VI from three federal universities in Southern Nigeria. A 35-item MHL Scale (MHLS) for university students (Crobach’s α=0.83) with 5-point response was used for data collection. Questionnaire distribution was achieved through the help (...) of two research assistants. Means, standard deviations, analysis of variance and regression plot were employed to analyze the research data. Participants’ mean age was 24.96±3.86 years. Results showed a higher level of mental health literacy across seven domains of the MHL Scale among students with VI compared to those without this disability. The students identified mental health literacy they possess including the ability to recognize specific disorders, the ability to seek mental health information, the ability to identify risk factors and causes, the ability to understand self-treatment options, the ability to access professional assistance, and positive behaviors that promote awareness and help-seeking. VI did not significantly impact the mental health literacy of FGUS with VI. VI explained only 6.31% of the variation in MHL among FGUS with VI. Accordingly, mental health literacy is an essential skill that should be acquired by everyone, including those who suffer from specific disorders and professionals who care for them. Further effort is required in order to improve the mental literacy of FGUS without VI in Nigerian universities. (shrink)

Recent studies have shown that pharmacists have an interest in conducting research. However, barriers such as lack of confidence prevent pharmacists from participating in ruling research. This study evaluated pharmacists’ self-perceived competence and confidence scores for health-related research. A validated self-designed questionnaire was distributed to randomly recruited Libyan pharmacists in hospitals and community pharmacies. Both descriptive and inferential statistical analyses were applied to the data. The analysis included 191 responses. Most respondents had prior research (...) experience (67.0%). Over two-thirds (72.3%) rated their ability to conduct health-related research as good to excellent. The majority had not published articles in peer-reviewed journals in the past five years (71.2%) and had no abstracts or posters published at local/regional (65.4%) or international conferences (79.1%). Lack of support (55.5%) was the most common barrier to participating in health-related research, followed by lack of funds (42.9%), time (29.3%), and knowledge (26.2%). At least two-thirds of pharmacists felt somewhat competent or confident in conceptualizing research ideas, collecting data, managing and storing data, and preparing presentations. Less than 60% felt competent /confident in outlining statistical plans and using statistical software. Overall, pharmacists displayed moderate competence (median score=38.0/65) and confidence (median score=40/65) in planning and conducting health-related research. Those with prior research experience (median score=42.0 vs. 29.0) and training (median score=41.0 vs. 28.0) had significantly higher scores. Higher scores were also noted among those who had published in peer-reviewed journals (median score=46.0 vs. 37.0) and presented at regional/local conferences (median score=46.5 vs. 34.0). Most pharmacists in Libya were interested in conducting research, and the majority of them had previous research experience and previous research-related training. The pharmacists had moderate competence and confidence to plan and conduct research. Research training was recommended for practicing pharmacists and pharmacy students to improve pharmacists’ research involvement and promote the advancement of pharmacy practice in Libya. (shrink)

This study aimed to determine the health practices among the secondary school teachers during the Covid-19 pandemic in Ichon National High School. This considered the socio - demographic profile of the teachers in terms of age, sex, civil status and teaching load and the extent of practice employed by the teachers in the said health dimensions. A total of 53 teachers from Ichon National High School participated as respondents in the evaluative method of research that consists in (...) three parts questionnaires. The statistical treatment used in the computation and analysis of gathered data to determine the socio-demographic profile of the respondents are the descriptive statistics such as frequency and percentage. As to the significance of health practices during COVID-19 pandemic, Kruskal Wallis and Mann-Whitney U test was used to analyze the significant differences on the extent of practices among the different health dimensions. The very high extent of the implementation on the health practices during COVID-19 pandemic shows that the teachers are frequently practiced the health practices. The highest mean in mental aspect is conclusive that teacher during the pandemic exert effort to stay healthy on this and other areas as well. It is recommended to conduct further study regarding on the health practices among the secondary school teachers. (shrink)

The continuous growth of healthcare data has made it essential to develop efficient systems that not only alert healthcare providers but also visualize patient data in a comprehensible way. This study introduces a Health Alert System integrated with Report Visualization powered by Data Analytics to improve patient monitoring and alerting mechanisms. By leveraging real-time data from wearable sensors and hospital records, the system generates health alerts based on deviations from normal parameters. The proposed system (...) combines predictive analytics and historical data to flag potential emergencies before they occur. The visual analytics platform provides comprehensive reports to healthcare providers, enabling them to monitor trends, identify risk factors, and make informed decisions. This approach significantly enhances patient care by minimizing delays in response and improving overall health outcomes. The system's architecture, based on big data frameworks, supports scalable and efficient data processing. The study demonstrates how the integration of predictive models and data visualization tools can revolutionize health alert systems, making them more responsive and adaptive to individual patient needs. Future enhancements will focus on incorporating machine learning models for more personalized predictions and extending the system's capabilities to remote patient care. (shrink)

As urbanization accelerates, diminishing green spaces pose growing public health challenges, exacerbating pollution exposure, stress, and chronic illnesses. This narrative review synthesizes research on the biological and psychological pathways through which urban plants promote human health. Biologically, urban greenery enhances air quality by filtering pollutants, strengthens immune function by increasing microbial diversity, and regulates stress physiology via endocrine mechanisms. Psychologically, nature exposure restores cognitive function, reduces stress, and fosters emotional resilience, as evidenced by neuroimaging and epidemiological studies. (...) The findings suggest that integrating green infrastructure into urban environments yields measurable public health benefits, including lower mortality rates, reduced cardiovascular and respiratory disease prevalence, and improved mental well-being. However, critical research gaps remain regarding the optimal “doses” of nature for health, cultural differences in nature perception, and the potential role of incorporating insights from quantum and informational theories to study cognitive-environment interactions (e.g., Granular Interaction Thinking Theory). Addressing these gaps through interdisciplinary collaboration, artificial intelligence integration, and data-driven urban planning can help cities evolve into healthier, more sustainable ecosystems. (shrink)

The internet of things is increasingly spreading into the domain of medical and social care. Internet-enabled devices for monitoring and managing the health and well-being of users outside of traditional medical institutions have rapidly become common tools to support healthcare. Health-related internet of things (H-IoT) technologies increasingly play a key role in health management, for purposes including disease prevention, real-time tele-monitoring of patient’s functions, testing of treatments, fitness and well-being monitoring, medication dispensation, and health research (...) data collection. H-IoT promises many benefits for health and healthcare. However, it also raises a host of ethical problems stemming from the inherent risks of Internet enabled devices, the sensitivity of health-related data, and their impact on the delivery of healthcare. This paper maps the main ethical problems that have been identified by the relevant literature and identifies key themes in the on-going debate on ethical problems concerning H-IoT. (shrink)

This chapter provides an overview of how existential phenomenology has influenced qualitative research methods across a range of disciplines across the social, health, educational, and psychological sciences. It focuses specifically on how the concepts of “existential structures,” or “existentials”—such as selfhood, temporality, spatiality, affectivity, and embodiment—have been used in qualitative research. After providing a brief introduction to what qualitative research is and why philosophers should be interested in it, the chapter provides clear, straightforward examples of how (...) qualitative researchers have used existentials to analyze qualitative data and design qualitative studies. The chapter is intended to introduce philosophers to existential approaches to phenomenological qualitative research, with the aim of facilitating interdisciplinary dialogue and collaboration. (shrink)

The proposed system combines predictive analytics and historical data to flag potential emergencies before they occur. The visual analytics platform provides comprehensive reports to healthcare providers, enabling them to monitor trends, identify risk factors, and make informed decisions. This approach significantly enhances patient care by minimizing delays in response and improving overall health outcomes. The system's architecture, based on big data frameworks, supports scalable and efficient data processing. The study demonstrates how the integration of predictive models (...) and data visualization tools can revolutionize health alert systems, making them more responsive and adaptive to individual patient needs. Future enhancements will focus on incorporating machine learning models for more personalized predictions and extending the system's capabilities to remote patient care. (shrink)

Chronic diseases like diabetes and hypertension are significant public health challenges globally, especially in resource-limited rural settings like Barangay Damilag. An increasing incidence of these conditions with limited accessibility to healthcare necessitates effective self-management to improve their outcomes. This study aims to determine the correlation between health literacy, social support, psychological factors, and self-management among chronic disease patients. The study employed descriptive correlational and causal research design, and data were collected from 256 samples using a survey (...) questionnaire. Findings revealed that health literacy (M = 3.55, SD = 0.72) - knowledge of disease (M = 3.60, SD = 0.82, r = 0.218, p = .001) , medication management skills (M = 4.07, SD = 0.553, r = 0.038, p = .550) , and access to health information (M = 2.97, SD = 0.788, r = 0.123, p = .05) -- significantly predicts self-management by enabling informed decision-making and improved treatment adherence. Social support (M = 3.37, SD = 0.853) , such as family (M = 4.04, SD = 0.824, r = 0.627, p = .000), and peers (M = 2.51, SD = 0.895, r = 0.006, p = .929), showed moderate barriers to self-care and improved emotional resilience. Psychological determinants (M = 3.50, SD = 0.858) - self-efficacy (M = 3.61, SD = 0.839, r = 0.714, p = .000), and motivation (M = 3.91, SD = 0.957, r = 0.451, p = .001) - emerged as the strongest predictors of self-management. Through regression and structural equation modeling analyses, the researcher identified causal pathways and the combined impact of these factors on self-management. The study contributes insight for healthcare practitioners, policymakers, and community organizations by highlighting the need for holistic interventions. Recommended strategies to address barriers and optimize self-management include integrating health education, social support systems, and psychological empowerment. (shrink)

The continuous growth of healthcare data has made it essential to develop efficient systems that not only alert healthcare providers but also visualize patient data in a comprehensible way. This study introduces a Health Alert System integrated with Report Visualization powered by Data Analytics to improve patient monitoring and alerting mechanisms. By leveraging real-time data from wearable sensors and hospital records, the system generates health alerts based on deviations from normal parameters. The proposed system (...) combines predictive analytics and historical data to flag potential emergencies before they occur. The visual analytics platform provides comprehensive reports to healthcare providers, enabling them to monitor trends, identify risk factors, and make informed decisions. This approach significantly enhances patient care by minimizing delays in response and improving overall health outcomes. The system's architecture, based on big data frameworks, supports scalable and efficient data processing. The study demonstrates how the integration of predictive models and data visualization tools can revolutionize health alert systems, making them more responsive and adaptive to individual patient needs. Future enhancements will focus on incorporating machine learning models for more personalized predictions and extending the system's capabilities to remote patient care. (shrink)

As COVID-19 spread, clinicians warned of mental illness epidemics within the coronavirus pandemic. Funding for digital mental health is surging and researchers are calling for widespread adoption to address the mental health sequalae of COVID-19. -/- We consider whether these technologies improve mental health outcomes and whether they exacerbate existing health inequalities laid bare by the pandemic. We argue the evidence for efficacy is weak and the likelihood of increasing inequalities is high. -/- First, we review (...) recent trends in digital mental health. Next, we turn to the clinical literature to show that many technologies proposed as a response to COVID-19 are unlikely to improve outcomes. Then, we argue that even evidence-based technologies run the risk of increasing health disparities. We conclude by suggesting that policymakers should not allocate limited resources to the development of many digital mental health tools and should focus instead on evidence-based solutions to address mental health inequalities. (shrink)

Objective: This main aim of the study is to explore COVID-19 pandemic problems from the perspective of public health-clinical care ethics through online mediareports in Turkey. Method: This research was designed as a descriptive and qualitative study that assesses COVID-19 through online media reports on critics between the periods of March 11, 2020 and April 2 2020 as a quantitative as number of reports and qualitative study, across Turkey. Reports were from Turkish Medical Association websites which included newspaper (...) reports. Study data were presented as statistically and qualitative data case and headlines. No ethical or ofTicial permission was sought as the study was conducted through open access internet news sites. Results: This online reports analysis retrieved about 6723 articles about the COVID-19. According to study data, information about COVID-19 were themed as follows: general deTiciencies in taking action and isolation, lack of isolation, passengers and transport vehicles not quarantined ; insufTicient diagnostic tests, decision to test after healthcare professionals become infected, lack of equipment, lack of evaluation outbreak countries [Table 2]. Conclusion and Suggestions: COVID-19 is a pandemic and is a global public health problem that concerns every individual and needs to be handled carefully. This requires a multi-faceted preparation and education. In this context, healthcare professionals should be well trained in this aspect and have all the necessary equipment throughout the process. Additionally, it should work systematically with the cooperation of all health organizations, the Ministry of Health, local governments and of course the media, in order to inform society, fairly distribute the resources and to implement the safety measures effectively. BrieTly, lack of transparency, insufTicient information, limited resources, lack of public health protection measures such as partial quarantine decision, partial implementation of the scientiTic board's re c ommenda ti on s fo r e c on omi c rea s on s, and contradiction of the explanations are revealed as serious ethical problems. (shrink)

Doctoral graduates in philosophy are an excellent source of information about the discipline: they are at the cutting edge of research trends, have an inside view of researchfocused departments, and their employment prospects provide early insights on the future health of the discipline. We report on the results of a survey sent to recent PhD graduates and current students, as well as data gathering efforts by Academic Placement Data and Analysis that have taken place over the (...) past ten years. In this report we especially focus on demographic representation, program ratings, academic job placement, and non-academic careers. (shrink)

The increasing rate and sophistication of cyber attacks pose a major risk to health data security. Traditional security systems cannot handle advanced ransomware, insider threats, and phishing attacks and hence incorporation of artificial intelligence (AI) into cybersecurity solutions becomes the need of the hour. AI-based security solutions leverage machine learning, behavior analysis, and real-time anomaly detection to identify and counter threats before they affect sensitive patient information. This study examines real-world case studies where AI successfully prevented cyberattacks in (...) healthcare settings, including a major U.S. hospital mitigating a ransomware attack, a European health system detecting insider threats, and a telemedicine platform blocking phishing attempts. The findings demonstrate AI’s superior threat detection, rapid response capabilities, and potential to enhance regulatory compliance. Even with significant advancements introduced by AI, challenges such as false positives, data privacy, and ethics exist. This article highlights the pioneering function of AI in protecting healthcare data and presents a vision on the future of AI-based cyber protection. (shrink)

Food has been a vital material of the life since inception of all organisms. By taking food we ensure growth of our children and youth, and maintain our good health. But some foods are good and helpful for maintaining health, while some are harmful. A large part of it is scientifically beneficial for body and fulfils needs of our life style. Thus, it can be stated that food is that which nourishes our body. It may also be defined (...) as anything which is eaten or drunk, that meets the needs for energy building. In short, the food is the raw material from which our bodies are made. Intake of its any kinds amounts to health, which may be evident in our appearance, efficiency and emotional well-being. My objective of this study is that to check the health status of urban and rural health. This approach is used for rural and urban population of Allahabad district. Research design is descriptive type and data collection techniques are applied interview schedule, participant observation, sampling etc. Finally conclusion is found out in my study that variation of diet is present and health of urban people is good. (shrink)

Health service consumers' satisfaction with the services they receive has been a challenge over the past decade, and this has been attributed to many factors that diverse scholars have investigated using different variables. In this study, the attitude and ethical behaviours of healthcare providers as antidotes to health service consumers' satisfaction in the Primary Health Centre at Mgbuoshimini, Port Harcourt, Nigeria, were investigated. A cross-sectional descriptive research design was used to select participants from pregnant women, nursing (...) mothers, couples for family planning, and sick patients. The data were analysed using descriptive statistical tools. The results of the grand total response values were 400 (100%) and strongly agree had 190 (47.5%), agree had 160 (40%), 390 (100%) and strongly agree had 260 (66.7%), agree had 100 (25.6%), and strongly disagree had 13 (3.3%). The overall results were strongly agreed (66.7%) and agreed (25.6%); these connote that the attitudes and ethical behaviours of the healthcare providers towards healthcare service consumers in the primary healthcare facility were poor and that healthcare providers do not execute good ethical behaviour towards health service consumers in the facility, leading to low levels of health resource consumption, low patronage image promotion, and consumers' loss of confidence in the service provider. Therefore, the government should put mechanisms in place to ensure a positive attitude and favourable ethical behaviour among healthcare providers, and individual healthcare providers should also acquire soft skills to improve their attitude and ethical behaviour. (shrink)