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

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

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

Aim This study is a systematic review that aims to assess how healthcare professionals manage ethical challenges regarding information within the clinical context.Method and Materials We carried out searches in PubMed, Google Scholar and Embase, using two search strings; searches generated 665 hits. After screening, 47 articles relevant to the study aim were selected for review. Seven articles were identified through snowballing, and 18 others were included following a system update in PubMed, bringing the total number of articles reviewed (...) to 72. We used a Q-sort technique for the analysis of identified articles.Findings This study reveals that healthcare professionals around the world generally employ (to varying degrees) four broad strategies to manage different types of challenges regarding information, which can be categorized as challenges related to confidentiality, communication, professional duty, and decision-making. The strategies employed for managing these challenges include resolution, consultation, stalling, and disclosure/concealment.Conclusion There are a variety of strategies which health professionals can adopt to address challenges regarding information management within the clinical context. This insight complements current efforts aimed at enhancing health professional-patient communication. Very few studies have researched the results of employing these various strategies. Future empirical studies are required to address this. (shrink)

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

Disease-related challenges are often associated with perceived uncertainties in individuals, triggering attempts to cope with the situation. Our study aims to understand patients’ coping strategies regarding health information-seeking behaviors (HISBs). It is guided by the Uncertainty Management Theory, and seeks to grant insights into multi-channel HISB by describing how uses of interpersonal and media channels interact to cope with uncertainties, and how trust influences the process of multi-channel HISB. Patients diagnosed with osteoarthrosis (N = 34) participated in (...) qualitative semi-structured interviews, from which five patterns of multi-channel HISB, ranging from a focus on the physician to a focus on the internet, were identified. These patterns are distinguished by underlying functions of trust – including trust serving as an additional coping strategy, and as an important influencing factor for perceiving information as meaningful – and by whether information needs remain and patients turn to multiple sources. These findings form the basis for further theory development considering the iterative nature of HISB and the role of trust. (shrink)

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

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

As an employee, a sports doctor has obligations to their employer, but also professional and widely accepted obligations of a doctor to the patient . The conflict is evident when sports doctors are asked by an athlete to keep personal health information confidential from the coach and team management, and yet both doctor and athlete have employment contracts specifying that such information shall be shared. Recent research in New Zealand shows that despite the presence of an (...) employment contract, there appears to be a wide range of behaviours among sports doctors when an athlete requests that information about them be kept from team management. Many seem willing to honour requests to keep health information about the athlete confidential, thereby being in breach of the employment contract, while others insist on informing team management against the wishes of the athlete. There are a number of potential solutions to this dilemma from forcing doctors to meet their contractual obligations, to limiting the expectations of the employment contract. This paper suggests that at times it may be appropriate to do both, making the position of the doctor clearer and supporting the ability of this group to resist pressure by coaches and management through having a robust code of ethics. (shrink)

It is reasonable to consider and trust that information taken from us about our medical health and history will be protected by rules on confidentiality and consent. Apart from very rare cases, perhaps of major public interest or for public health reasons, this information will not be shared with others without our consent. However, both a number of reforms in National Health Service patient data management policy and developments in the general law on privacy (...) challenge this traditional view of our control and choice over our medical information, as this article will show. In doing so, it analyses the question as to whether in spite of the rhetoric do any of us now really have choice over the access to and use of our medical data? In reality, our choices are limited and in any relationship of trust and shared decision making this ought to be transparent. (shrink)

From 1900 onwards, scientists and novelists have explored the contours of a future society based on the use of “anthropotechnologies” (techniques applicable to human beings for the purpose of performance enhancement ranging from training and education to genome-based biotechnologies). Gradually but steadily, the technologies involved migrated from (science) fiction into scholarly publications, and from “utopia” (or “dystopia”) into science. Building on seminal ideas borrowed from Nietzsche, Peter Sloterdijk has outlined the challenges inherent in this development. Since time immemorial, and at (...) least since the days of Plato’s Academy, human beings have been interested in possibilities for (physical or mental) performance enhancement. We are constantly trying to improve ourselves, both collectively and individually, for better or for worse. At present, however, new genomics-based technologies are opening up new avenues for self-amelioration. Developments in research facilities using animal models may to a certain extent be seen as expeditions into our own future. Are we able to address the bioethical and biopolitical issues awaiting us? After analyzing and assessing Sloterdijk’s views, attention will shift to a concrete domain of application, namely sport genomics. For various reasons, top athletes are likely to play the role of genomics pioneers by using personalized genomics information to adjust diet, life-style, training schedules and doping intake to the strengths and weaknesses of their personalized genome information. Thus, sport genomics may be regarded as a test bed where the contours of genomics-based self-management are tried out. (shrink)

It is argued that the primary aim of institutional management is to protect the moral integrity of health professionals without significantly compromising other important values and interests. Institutional policies are recommended as a means to promote fair, consistent, and transparent management of conscience-based refusals. It is further recommended that those policies include the following four requirements: (1) Conscience-based refusals will be accommodated only if a requested accommodation will not impede a patient’s/surrogate’s timely access to information, counseling, (...) and referral. (2) Conscience-based refusals will be accommodated only if a requested accommodation will not impede a patient’s timely access to health care services offered within the institution. (3) Conscience-based refusals will be accommodated only if the accommodation will not impose excessive burdens on colleagues, supervisors, department heads, other administrators, or the institution. (4) Whenever feasible, health professionals should provide advance notification to department heads or supervisors. Formal review may not be required in all cases, but when it is appropriate, several recommendations are offered about standards and the review process. A key recommendation is that when reviewing an objector’s reasons, contrary to what some have proposed, it is not appropriate to adopt an adversarial approach modelled on military review boards’ assessments of requests for conscientious objector status. According to the approach recommended, the primary function of reviews of objectors’ reasons is to engage them in a process of reflecting on the nature and depth of their objections, with the objective of facilitating moral clarity on the part of objectors rather than enabling department heads, supervisors, or ethics committees to determine whether conscientious objections are sufficiently genuine. (shrink)

This paper examines the ethical issues faced by health workers managing a fictional case of a female sex worker who is hepatitis B positive with a high level of virus but is asymptomatic. According to guidelines she does not require treatment herself, but is potentially highly infectious to others. Recent legal cases in the UK show it can be criminal to pass on HIV or hepatitis B infection sexually if the risk is known and the partner has not been (...) informed. However, there is no statute or case law showing that health workers are required to intervene to prevent such a potential ‘crime’, particularly when the partners are unknown, as in this case. The health workers could respond in various ways. They could do nothing, thus making further infection probable. They could advise the sex worker to use condoms and to inform her clients. They could treat the sex worker to reduce her level of infectivity, although there is no benefit to her. They could disclose the sex worker's status, although breaking confidentiality is a serious matter ethically and may be of no benefit to the unknown client group. Regulating prostitution might help; but sex workers with infection may work off licence. This paper discusses the clinical, moral and ethical issues associated with such a scenario and concludes that the most beneficial course is to target clients, through health education, to recognise the potential risks of infection from a sex worker and to take suitable precautions including immunisation against hepatitis B. (shrink)

El trabajo tuvo como objetivo caracterizar los resultados de la gestión de la investigación en ciencias sociales y humanísticas aplicadas en salud en el contexto de su institucionalización a través del Centro para el desarrollo de las Ciencias Sociales y Humanísticas en salud. Con el fin de alcanzar el objetivo propuesto se determinaron los siguientes momentos: primero se fundamentó el proceso de gestión de la investigación en estas áreas de conocimientos en el Cendecsa; se presentaron los resultados de la gestión (...) de la investigación de 2013-2017; y por último se realizó una valoración de sus impactos científicos y sociales de la entidad. Se utilizó el enfoque de los estudios sociales de la ciencia y la tecnología, con el enfoque metodológico cuanticualitativo: la revisión bibliográfica y de documentos elaborados como informes de Balance anual de la ciencia, de los planes de ciencia del centro y de otros procesos como los expedientes presentados en el proceso de reordenamiento de las entidades de ciencia de 2013 y 2014, documentos normativos y entrevistas a informantes clave. The aim of the paper was to characterize the results of research management in Social and Humanistic Sciences applied to Health in the context of its institutionalization through the Center for the Development of Social and Humanistic Sciences in Health. To achieve this aim, the following moments were determined: first, the research management process in these areas of knowledge in Cendecsa were underpinned from the context which knowledge production; second, Social and Humanistic Sciences applied to health research management results from 2013 to 2017 were presented; finally, its scientific and social impacts were assessed. The social studies of science and technology approach was used, with the quantitative-qualitative methodological approach: bibliographic review and documents such as annual science assessment reports, science plans in the institution and other processes like files presented in the science organizations restructuring process and other normative documents. (shrink)

Lack of supportive workplaces may be depriving babies and mothers of the health advantages of breastfeeding. This citizen science pilot project set out to engage women in photographing and sharing information on the available facilities for breastfeeding and expressing and storing breastmilk in Australian workplaces. While some useful insights were gained, the project failed in the sense that 234 people ‘liked’ the project Facebook page set up to recruit participants, but only nine photographs were submitted. The heaviest loss (...) of participation occurred after the ethics committee requirements were explained, in particular, the requirement for employer consent to take a photograph, or alternatively, for a participant to agree to bear the risk of taking a photo without permission. The ethics committee also made stipulations about the formality of language to be used. Thus, the project’s potential role as an enabler for health action was neutered. We argue that the ethics requirements worked contrary to our purpose and possibly acted to reinforce the powerlessness some women experience at work. (shrink)

Informed consent is the legal instrument that purports to protect an individual's autonomy and defends against medical arbitrariness. Informed Consent and Health highlights that possession of complete information about all relevant aspects of a proposed treatment is integral to the ability of a patient to make an informed choice. With patient choice at both legislative and judicial levels rising to greater levels of prominence, this timely book examines how the tensions between the rights of patients to make choices (...) and the duties of doctors to provide health care are managed.This illuminating book investigates our evolving understanding of informed consent from a range of comparative and international perspectives, demonstrating the diversity of its interpretations around the world. Chapters offer a nuanced analysis of the problems that impede the understanding and implementation of the concept of informed consent and explore the contemporary challenges that continue to hinder both the patient and the medical community.Containing an in-depth discussion on this fundamental right, this thought-provoking book will be of value to academics and practitioners alike. Providing fascinating insight into new solutions and interpretations, this book will also prove a key resource for clinicians and health care workers. (shrink)

Recently the World Health Organization has highlighted the need to strengthen mental health systems following emergencies, including natural and manmade disasters. Mental health services need to be informed by culturally attuned evidence that is developed through research. Therefore, there is an urgent need to establish rigorous ethical research practice to underpin the evidence-base for mental health services delivered during and following emergencies.

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)

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

La gestión del conocimiento es un proceso relacionado con la producción, transmisión y utilización del conocimiento y su pertinencia para el desempeño organizacional; en la actualidad han aparecido diversidad de modelos que prescriben su configuración. El presente artículo describe el modelo que fundamenta teórica y metodológicamente la aplicación de la gestión del conocimiento en el Centro de Desarrollo de las Ciencias Sociales y Humanísticas en Salud. Esta entidad dedicada a la producción y transmisión del conocimiento científico en estas áreas de (...) conocimiento, no contaba con un modelo que permitiera estructurar el funcionamiento del proceso de su construcción y difusión en su interior y hacia el contexto. El modelo propuesto atiende la especificidad de los procesos de la entidad, y guía teórica y metodológicamente los flujos de información y conocimientos, las redes de actores presentes y los procesos de gestión de conocimiento que se integran en la dinámica de la organización. Knowledge management is a process related to the production, transmission and use of knowledge and its relevance to the organizational performance; nowadays there are several models that prescribe its configuration. This article describes a model that theoretically and methodologically bases the implementation of knowledge management on the Centre for the development of social and humanistic sciences in Health. This entity devoted to the production and transmission of scientific knowledge in these areas of knowledge, did not have a model that allow to structure the operation of its construction and diffusion process from inside and towards the context. The proposed model deals with specificities of the entity´ s processes, and theoretically and methodologically leads flows of information and knowledge, networks of actors and knowledge management processes that are integrated into the dynamics of the organization. (shrink)

Engagement in health research is increasingly practised worldwide. Yet many questions remain under debate in the ethics field about its contribution to health research and these debates have largely not been informed by those who have been engaged in health research. This paper addresses the following key questions: what should the ethical goals of engagement in health research be and how should it be performed? Qualitative data were generated by interviewing 22 people with lived experience, members (...) of the public, and engagement managers about power sharing in health research. Thematic analysis of study data identified the following five themes: the value of engagement in research, ideal engagement, tokenistic engagement, terms to describe those engaged, and engagement roles in research. The paper presents that data and then considers what insights it offers for what engagement should look like—its ethical goals and approach—according to those being engaged. (shrink)

: Arguments for efficiency in health care delivery have been used to support some level of withholding of information about available treatment options from patients in managed care systems. To the extent that such arguments prevail, they may necessitate changes in the established understanding of and commitment to informed consent and the disclosure of information to patients.

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

Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. Methods: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes (...) regarding result management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42). Results: Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%–92.7%) and to reasons opposing disclosure was low (4.1%–18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%–78.8%), and more agreement with arguments opposing disclosure (15.7%–51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived “duty” to disclose, that if the clinician possessed the information, the clinician could not withhold it. Discussion: While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives. (shrink)

The complex health and social circumstances of living-at-risk, frequent users of emergency departments (aREDFUs) in the health jurisdictions of high-income countries, and the related, significant challenges posed for emergency departments and the health care providers working within them, are identified and explored in the paper. Ethical analyses of a set of relevant domains are performed, i.e., individual and relational autonomy considerations, relevant social construction and personal responsibility conceptions, patient welfare principles (beneficence, nonmaleficence, continuity of care), harm reduction (...) methodologies and their applications, health equity, and justice considerations of the distributive, formal and social types. The outcomes of these analyses demonstrate that there are ethically compelling reasons for emergency departments to adopt an ethics-informed, policy-based approach to the longitudinal care and management of living-at-risk, frequent users of emergency departments. From a formal justice perspective, the development and uses of such an approach are justified by a demonstrable relevant difference between living-at-risk, frequent users of emergency departments and other persons and groups of patients who visit emergency departments. We propose an example of such a policy-based approach. Examples of possible, pragmatic applications of this approach, which help ensure that aREDFUs who present to the ED are managed in a fair and optimally consistent manner, are provided for the consideration of an urban emergency department’s policymaking working group. (shrink)

The mission of the Indian Health Service affects what research is done and how It is reviewed and managed and in turn affects the forms and process used to obtain informed consent. Consent forms must be Informative and understandable to American Indian and Alaska Native potential volunteers; the process used to obtain informed consent must minimize any institutional pressure to participate. The IHS Institutional Review Boards developed seven research Model Volunteer Consent Forms.

As next‐generation genomic sequencing, including whole‐genome sequencing information, becomes more common in research, clinical, and public health contexts, there is a need for comprehensive communication strategies and education approaches to prepare patients and clinicians to manage this information and make informed decisions about its use, and nowhere is that imperative more pronounced than when genomic sequencing is applied to newborns. Unfortunately, in‐person counseling is unlikely to be applicable or cost‐effective when parents obtain genomic risk information directly (...) via the Internet. As a rule, communication strategies should match how people are accessing health information. Today, many people can obtain health information in a variety of settings, including through direct‐to‐consumer services, via websites, and through other digital channels or settings. In response to these changes, new communication strategies need to be considered. Adopting a comprehensive communication model means understanding the multiple levels of influence experienced by parents and the clinicians who serve them. In addition, applying communication‐science principles can help in addressing some key challenges to effectively communicating genomic information to parents. (shrink)

With the rapid development of the Internet and the normalization of COVID-19 epidemic prevention and control, Online health communities have gradually become one of the important ways for people to obtain health information, and users have to go through a series of information processing when facing the massive amount of data. Understanding the factors influencing user information processing is necessary to promote users’ health literacy, health knowledge popularization and health behavior shaping. Based (...) on the Heuristic-Systematic Model, Information Ecology Theory, Privacy Trade-Off and Self-Efficacy Theory, we constructed a model of factors influencing user information processing in online health communities. We found that information quality and emotional support had indirect effects on heuristic and systematic information processing, and these effects were mediated by privacy concerns and self-efficacy. In our research model, systematic information processing was most positively influenced directly by self-efficacy. Privacy concerns had a direct negative correlation with both dual information processing pathways. Therefore, OHCs managers should develop relevant regulations to ensure the information quality in OHCs and improve privacy protection services to promote user information processing by improving users’ self-efficacy and reducing their privacy concerns. Providing a user-friendly and interactive environment for users is also recommended to create more emotional support, thus facilitating more systematic information processing. (shrink)

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

ObjectiveThis study aims to investigate the lived experience in patients with obstructive sleep apnea syndrome and comorbid obesity following after continuous positive airway pressure therapy made with the disease the device, and to identify barriers and facilitators to the use of CPAP to improve rehabilitation provision and aid in disease self-management.MethodsQualitative research was conducted using three focus groups with a representative sample of 32 inpatients undergoing a 1-month pulmonary rehabilitation program at the IRCSS Istituto Auxologico Italiano San Giuseppe Hospital, (...) Verbania, Italy. The focus groups were recorded on tape, and contemporaneous notes were made. The tapes were transcribed verbatim, and Interpretative Phenomenological Analysis was used to develop themes.ResultsSix main themes were extracted: Living the diagnosis as a shock; You should not sleep on it: the importance of prevention; The adjustment to CPAP; Barriers and facilitators to the use of CPAP; Three in a bed; and The relationship with the healthcare system.ConclusionResults of this study suggest potential avenues for interventions to increase adherence to CPAP, including the provision of information and continued support. Individual counseling providing strategies aimed at helping the person to cope with the emotional problem and relational difficulties associated with the use of CPAP, and at strengthening self-efficacy and self-management skills are also encouraged for optimal care during the rehabilitation program. (shrink)

International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice (...) locally, and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. (shrink)

Theory of health care ethics -- Principles of health care ethics -- The moral status of gametes and embryos : storage and surrogacy -- The ethical challenges of the new reproductive technology -- Ethics and aging in America -- -- Healthcare ethics committees : roles, memberships, structure, and difficulties -- Ethics in the management of health information systems -- Technological advances in health care : blessing or ethics nightmare? -- Ethics and safe patient handling (...) and mobility -- Spirituality and healthcare organizations -- A new era of health care : the ethics of healthcare reform -- Health inequalities and health inequities -- The ethics of epidemics -- Ethics of disasters : planning and response -- Domestic violence : changing theory, changing practice -- Looking toward the future. (shrink)

Child maltreatment is conceived as a public health problem. Therefore, it is appropriate to analyse the explanatory models that deal with this behaviour, reflecting these postulates within the panorama of health education, which makes health professionals responsible for taking action. In order to do this, the theoretical context and the awareness of nursing students in relation to these theories must be analysed. In turn, the use of information and communication technologies in this field should be valued, (...) due to their capacity to manage and systematise information, becoming a relevant tool when training future nursing professionals. Without forgetting that health informatics is a spectrum of multidisciplinary fields that includes the study of the design, development and application of computational techniques to improve healthcare. A review of the scientific literature was carried out, for which primary and secondary sources were consulted, tracing a search for data thanks to the keywords: ‘nursing’; ‘abuse’; ‘children’; ‘education’ and ‘theory’. During the second half of the 20th century, several health paradigms have been developed, which present different pathways to health education. There have also been three generations of theoretical models that attempt to analyse the public health problem of child maltreatment. This reflects the need for a transdisciplinary approach to child abuse, where there is no one explanatory model that is more appropriate than another, but where the choice of the health education paradigm and, within this, the most recommendable theory will depend on each situation. (shrink)

The promises of precision medicine are often heralded in the medical and lay literature, but routine integration of genomics in clinical practice is still limited. While the “last mile” infrastructure to bring genomics to the bedside has been demonstrated in some healthcare settings, a number of challenges remain — both in the receptivity of today's health system and in its technical and educational readiness to respond to this evolution in care. To improve the impact of genomics on health (...) and disease management, we will need to integrate both new knowledge and new care processes into existing workflows. This change will be onerous and time-consuming, but hopefully valuable to the provision of high quality, economically feasible care worldwide. (shrink)

: The market success of managed health plans in the 1990s is bringing to medicine the easy availability of electronically stored information that is characteristic of the securities and consumer credit industries. Protection for medical confidentiality, however, has not kept pace with this information revolution. Employers, the managed care industry, and legal and ethics commentators frequently look to the concept of informed consent to justify particular uses of health information, but the elastic use of informed (...) consent as a way of responding to managed health plans' disclosure of information to third parties fails to address underlying questions involving substantive value choices. (shrink)

BackgroundAs hospitals have grown more complex, the ethical concerns they confront have grown correspondingly complicated. Many hospitals have consequently developed health care ethics programs (HCEPs) that include far more than ethics consultation services alone. Yet systematic research on these programs is lacking.MethodsBased on a national, cross-sectional survey of a stratified sample of 600 US hospitals, we report on the prevalence, scope, activities, staffing, workload, financial compensation, and greatest challenges facing HCEPs.ResultsAmong 372 hospitals whose informants responded to an online survey, (...) 97% of hospitals have HCEPs. Their scope includes clinical ethics functions in virtually all hospitals, but includes other functions in far fewer hospitals: ethical leadership (35.7%), regulatory compliance (29.0%), business ethics (26.2%), and research ethics (12.6%). HCEPs are responsible for providing ongoing ethics education to various target audiences including all staff (77.0%), nurses (59.9%), staff physicians (49.0%), hospital leadership (44.2%), medical residents (20.3%) and the community/general public (18.4%). HCEPs staff are most commonly involved in policy work through review of existing policies but are less often involved in development of new policies. HCEPs have an ethics representative in executive leadership in 80.5% of hospitals, have representation on other hospital committees in 40.7%, are actively engaged in community outreach in 22.6%, and lead large-scale ethics quality improvement initiatives in 17.7%. In general, major teaching hospitals and urban hospitals have the most highly integrated ethics programs with the broadest scope and greatest number of activities. Larger hospitals, academically affiliated hospitals, and urban hospitals have significantly more individuals performing HCEP work and significantly more individuals receiving financial compensation specifically for that work. Overall, the most common greatest challenge facing HCEPs is resource shortages, whereas underutilization is the most common greatest challenge for hospitals with fewer than 100 beds. Respondents’ strategies for managing challenges include staff training and additional funds.ConclusionsWhile this study must be cautiously interpreted due to its limitations, the findings may be useful for understanding the characteristics of HCEPs in US hospitals and the factors associated with these characteristics. This information may contribute to exploring ways to strengthen HCEPs. (shrink)

Gamma radioactivity produced by human technology is the most dangerous industrial product to life. Two recent global catastrophic events in which nuclear plants were involved, separated only by 25 years, have confirmed that, independently of the usage of nuclear weapons, achieving the 100% of security in the nuclear energy management was and still is a complete unrealistic idea. Although the guarantee of offering information of food and drink products quality concerning the date of expiry or the ingredients content (...) is nowadays stipulated in laws around many countries, this is not the case of the radiation safety. An important investment to offer information concerning gamma radiation safety conditions in food and drink products offered by markets, which also could help to localize quickly, possible radioactive slight incidents, is here discussed. The implementation of a previous consumer-behaviour experiment in markets is also suggested. (shrink)

The Danish health care sector currently undergoes changes that imply a gradual transition from an evidence‐based activity model to a value‐based quality model centered on patient involvement and value‐based governance. The patient naturally occupies a central position in health care, and the transition therefore raises important questions about health care quality and how successive national health quality strategies value quality and ascribe roles and agency to patients. To explore the complexity of these quality strategies, we analyze (...) and discuss how political discourse moments influence the contents of the national health quality strategies and how variation in the construal of patient roles and agency indicates discursive struggle in Danish national health care policy. Underlying theoretical concepts are informed by New Public Management, the welfare state, health communication, and discourse theory. Our analytical approach is inspired by Critical Discourse Analysis and combines content analysis with linguistic analysis. (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)

Background Universities in Cameroon are playing an active part in HIV/AIDS research and much of this research is carried out by students, usually for the purpose of a dissertation/thesis. Student theses/dissertations present research findings in a much more comprehensive manner and have been described as the stepping-stone of a budding scientist’s potential in becoming an independent researcher. It is therefore important to verify how students handle issues of research ethics. Method Theses/dissertations on HIV/AIDS that described research studies involving the use (...) of human research participants were screened to verify if research ethics approval and informed consent were obtained and documented. The contents of the consent forms were also qualitatively analyzed. Results Of 174 theses/dissertations on HIV, ethics approval was documented in 17 and informed consent in 77. Research ethics approval was first mentioned at all in 2002 and highly reported in the year 2007. Evidence of ethics approval was found for the first time in 2005 and informed consent first observed and evidenced in 1997. Ethics approval was mostly reported by students studying for an MD and was not reported in any Bachelors’ degree dissertation. Informed consent was also highly reported in MD theses followed by undergraduate theses. Voluntary participation and potential benefits of the study were some of the common aspects dealt with in most of the consent forms. The right to discontinue participation in the study and management of residual samples were scarcely ever mentioned. Conclusions Overall, and given the current state of the art of research ethics around the world, student-scientists in Cameroon would seem to be merely kidding with research ethics. It is thus essential that training in health research ethics be incorporated in the curriculum of universities in Cameroon in order that the next generation of scientists may be better equipped with thorough knowledge and practice of HRE. This, we believe, would be one way of fighting the occurrence of research scandals, which have not yet abated significantly, especially those arising from negligence or inexcusable ignorance. (shrink)

Adaptation and stress are two main concepts useful for better understanding the phases of illness and health-related human behavior. The two faces of adaptation, adaptation as a process and adaptation as a product, have raised the question of how long the adaptation process will take in cancer trajectories. The care setting transition from clinical-based into home-based cancer care has stressed the role of family caregivers (FCG) in cancer management. This study examines how types of demanded healthcare information (...) affect the FCG’s role in catalyzing the adaptation of female cancer patients. The mindsponge theory was used in conceptual development and results interpretation. Bayesian Mindsponge Framework (BMF) analytics was used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of demanded healthcare information, FCGs with a higher tendency to demand cancer-specific information are more likely to need support in catalyzing the adaptation of female cancer patients. Meanwhile, FCGs with a higher demand for information on alternative therapies are less likely to need support in catalyzing cancer adaptation. Other types of healthcare information have ambiguous effects on the need for support in cancer adaptation assistance. This study reveals that the demanded cancer-specific information, e.g., cancer’s prognosis or likely outcome, must be prioritized to assist FCG’s role in catalyzing adaptation among female cancer patients. Cancer prognosis and outcomes reflect the future of cancer care results. (shrink)

Research using mHealth apps has the potential to positively impact health care management and outcomes. However, choosing an appropriate mHealth app may be challenging for the health researcher. The author team used existing evaluation tools, checklists, and guidelines to assess selected mHealth apps to identify strengths, challenges, and potential gaps within existing evaluation tools. They identified specific evaluation tool components, questions, and items most effective in examining app content, usability, and features, including literacy demand and cultural appropriateness; (...) technical information; practical aspects of app functionality; and evolving capabilities of mobile medical apps. Challenges included the subjective nature of the results, time required to complete the evaluation, lack of emphasis on evidence‐based content, and inadequate tool flexibility. Health researchers considering the integration of mobile apps into research will benefit from evaluation tools that assess both evidence‐based content and the ability of the mobile app to securely integrate with other digital technologies involved in patient care. Next steps will include the involvement of health care providers and professionals, including nurses a wide range of expertise, to develop an mHealth evaluation tool that focuses on identifying quality, evidence‐based mobile apps into patient outcomes research. (shrink)

William F. Doverspike, PhD, is a licensed psychologist who holds a Diplomate in Clinical Psychology (ABPP) and he is also board certified in Neuropsychology (ABPN). He is an Associate Faculty member of the Georgia School of Professional Psychology, where he teaches graduate courses in professional ethics. As an independent practitioner, he maintains privileges at several local hospitals. He is a member of the Ethics Committee of the Georgia Psychological Association. Dr. Doverspike is Editor of the Georgia Psychologist magazine and has (...) authored over 50 articles and chapters. He conducts seminars on ethics, risk management, and diagnostic consultation. (shrink)

The impact of managed care on nurses’ workplace learning and teaching This paper examines the impact of managed care on the informal learning process for nurses in a major US‐based health organisation. Through the analysis of focus group data we report the nurses’ view of the effect recent changes have had on the nurse/patient/care relationship. Managed care, our research indicates, has transformed the learning milieus for nurses with two effects. First, nurses have seen their need for informal learning increase (...) while the time and context for that learning has diminished. Second, the process of teaching patients and families has also been adversely affected even as managed care creates the need for more patient education. We report the analysis of the data collected at group interviews involving nurses working in both hospital and community settings of a leading US‐based HMO. All interviews took place during September of 1997 at various sites in California. This study is part of a larger Social Science Research Council of Canada funded investigation into managed care in the US and Canada. (shrink)

Biomedical terminologies are focused on what is general, Electronic Health Records (EHRs) on what is particular, and it is commonly assumed that the step from the one to the other is unproblematic. We argue that this is not so, and that, if the EHR of the future is to fulfill its promise, then the foundations of both EHR architectures and biomedical terminologies need to be reconceived. We accordingly describe a new framework for the treatment of both generals and particulars (...) in biomedical information systems that is designed: 1) to provide new opportunities for the sharing and management of data within and between healthcare institutions, 2) to facilitate interoperability among different terminology and record systems, and thereby 3) to allow new kinds of reasoning with biomedical data. (shrink)