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

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

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)

Due to impaired communication, people with aphasia are often in a vulnerable situation and face barriers in accessing health information. This article discusses the contributions ofaugmentative and alternative communication for people with aphasia in optimizing communication, improving language recovery, and mainly in providing education and increasing access to healthinformation. This can be translated into a positive impact on respect for autonomy right, well-being, quality of life, and health outcomes (further participation in the decision-making process, (...) involvement,independence, and control of the rehabilitation process). Health professionals, including nurses, must have communication skills to communicate effectively with this population and also be prepared to useaugmentative and alternative communication strategies. (shrink)

Online health communities have enjoyed increasing popularity in recent years, especially in the context of the COVID-19 pandemic. However, several concerns have been raised regarding the privacy of users’ personal information in OHCs. Considering that OHCs are a type of data-sharing or data-driven platform, it is crucial to determine whether users’ health information privacy concerns influence their behaviors in OHCs. Thus, by conducting a survey, this study explores the impact of users’ health information privacy (...) concerns on their engagement and payment behavior in OHCs. The empirical results show that users’ concerns about health information privacy reduce their Paid in OHCs by negatively influencing their OHC engagement. Further analysis reveals that if users have higher benefit appraisals and lower threat appraisals, the negative effect of health information privacy concerns on users’ OHC engagement will decrease. (shrink)

The concept of community is increasingly the focus of political argument in Britain, the United States and elsewhere around the world. The sense people have of belonging to coummunities provides a powerful motivation which continues to affecct the political and social face of the world. Recently, debate about the relationship between individuals and their communities has become central to the making of both, American and European social policy. In the United Kingdom this is especially apparent in the area of (...) class='Hi'>health care, where ideas of community have informed recent legislation concerning community care, community health trusts and the Children Act among others. This volume explores the focus of interest in community and the emerging theoretical oppostion between communitarianism and liberalism, as well as the practical, theoretical and ethical issues relating to community in the health care professions, including a discussion of the health service as Civil Association, an analysis of liberal and communitarian views on the allocaiton of health care resources, an exploration of the use of genetic information and an examination of health care decision making for incapacitated elderly patients. (shrink)

People enroll in medical research for many reasons ranging from decisions regarding their own or family members' health situation to broader considerations including access to health and financial resources. In socially vulnerable communities the choice to participate is often based on a risk-benefit assessment that goes beyond the medical aspects of the research, and considers the benefits received. In this qualitative study, we examined the motivations of Rwandan women to participate in a non-commercial collaborative research study examining the (...) safety, acceptability, and adherence of a contraceptive vaginal ring in Rwanda juxtaposed with the perceptions of the research within the community. 351 women attended the screening visit, four were excluded because they were not able to complete the assessment of understanding. The remaining participants' ages ranged from 17 to 38 and 80% had primary level of education or below. 120 were enrolled. Findings highlighted motivations for joining the study that were relayed both formally by the clinic and informally by the community including the positive aspects of the ring. There were also some negative rumors circulating regarding the research site, likely from excluded participants who faced potential stigma based on that exclusion. It was understood by most participants that they were enrolled in a research study and participants actively sought out enrollment in the research for a variety of reasons. The experiences demonstrate that although inequalities in access to health care may create conflicting situations around the study, it is possible to form partnerships between a research center and participants/their partners, for research about reproductive health. (shrink)

People enroll in medical research for many reasons ranging from decisions regarding their own or family members' health situation to broader considerations including access to health and financial resources. In socially vulnerable communities the choice to participate is often based on a risk‐benefit assessment that goes beyond the medical aspects of the research, and considers the benefits received. In this qualitative study, we examined the motivations of Rwandan women to participate in a non‐commercial collaborative research study examining the (...) safety, acceptability, and adherence of a contraceptive vaginal ring in Rwanda juxtaposed with the perceptions of the research within the community. 351 women attended the screening visit, four were excluded because they were not able to complete the assessment of understanding. The remaining participants' ages ranged from 17 to 38 and 80% had primary level of education or below. 120 were enrolled. Findings highlighted motivations for joining the study that were relayed both formally by the clinic (e.g. testing and treatment) and informally by the community including the positive aspects of the ring. There were also some negative rumors circulating regarding the research site, likely from excluded participants who faced potential stigma based on that exclusion. It was understood by most participants that they were enrolled in a research study and participants actively sought out enrollment in the research for a variety of reasons. The experiences demonstrate that although inequalities in access to health care may create conflicting situations around the study, it is possible to form partnerships between a research center and participants/their partners, for research about reproductive health. (shrink)

BackgroundLimited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa.MethodsSemi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff (...) that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed.ResultsThirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking.ConclusionParticipant’s understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant’s interest in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant’s interest and therefore understanding of why their samples are being collected. (shrink)

Starting March 2020, Romania has been faced with a health crisis caused by the Covid-19 pandemic, a crisis reflected in media communication. In such situations, media play a crucial role in making relevant information timely and accessible, to help people learn about and understand what this pandemic is and how it is assessed, how to protect themselves, and what measures are taken by the authorities. This study aims to analyse how Romanian students keep informed during this national (...) and global crisis, which also generates adjacent media phenomena such as an increase in misinformation, lack of transparency in communicating with the public or over-abundance of information. To this end, we applied a questionnaire which was answered by 426 students from a public university in Romania. The results show that students use many sources to get the information they consider important, believe that the types of messages that help them feel properly informed about the pandemic and its implications: data, figures, accurate facts, and the information received from authorities or experts and that they prefer multimedia digital content. Young people tend to be cautious concerning the transparency of official communication and continue to consume information transmitted by the mainstream media, perceived as being more credible than other news sites. (shrink)

Obesity is a public health problem influenced by behavioral patterns that span an ecological spectrum of individual-level factors, social network factors and environmental factors. Both individual and environmental approaches necessarily include significant influences from social networks, but how and under what conditions social networks influence behavior change is often not clearly mapped out either in the obesity literature or in many intervention designs. In this paper, we provide an analysis of recent empirical work in obesity research that explicates social (...) network influences on eating behaviors. We argue that a relational rather than individualistic view of personhood should help us better understand the content and context of social network relations that inform health behavior choices. We introduce the concept of ‘identity-constitutive affiliations’ as the glue that binds these social relationships together. Finally, we outline the implications for public health ethics in the development of effective interventions to address overweight and obesity, leveraging the content and context of social network ties to reinforce healthy (or alter unhealthy) eating. More complex treatment of positive and negative behaviors stemming from social network connections should lead to more comprehensive theoretical models of health behavior change and more effective public health interventions. (shrink)

Patients increasingly share online health information with their physicians. However, few studies have investigated factors that may facilitate or inhibit such sharing and subsequent impact on physician-patient relationship. This study conducted a cross-sectional survey among 818 Chinese patients to examine if two patient characteristics -communication apprehension and eHealth literacy- influence their ways of sharing online health information with physicians and subsequently impact physician-patient relationship. The results showed that a majority of surveyed participants searched health (...) information online, and about half of them used such information during their doctor visits. Less apprehensive patients tend to share the information with their physicians more directly, which can positively affect perceived physician reactions and patient satisfaction. eHealth literacy, however, is not found to be associated with patients’ sharing of online information with physicians. This study underscores the importance of identifying patient characteristic’s role in patient-physician interaction. (shrink)

Public health preparedness must use a comprehensive approach that includes both communities and public health systems. There are three basic questions that should be asked when evaluating public health preparedness in communities of color: 1) Is the community basically healthy?; 2) Does the community have access, to necessary information, resources and services?; and 3) Are the information, resources and services available and provided to the community in a nondiscriminatory manner?Racial-based health disparities is a well (...) documented fact for many communities of color. Individuals from these communities tend to have more morbidity and higher mortality. This health disparity is race based and not just a function of social class. Similarly, access to basic goods and health care is racialized and class based. (shrink)

Public health preparedness must use a comprehensive approach that includes both communities and public health systems. There are three basic questions that should be asked when evaluating public health preparedness in communities of color: 1) Is the community basically healthy?; 2) Does the community have access, to necessary information, resources and services?; and 3) Are the information, resources and services available and provided to the community in a nondiscriminatory manner?Racial-based health disparities is a well (...) documented fact for many communities of color. Individuals from these communities tend to have more morbidity and higher mortality. This health disparity is race based and not just a function of social class. Similarly, access to basic goods and health care is racialized and class based. (shrink)

Information and communication technologies are widely used in healthcare. However, there is not still a unified taxonomy for them. The lack of understanding of this phenomenon implies theoretical and ethical issues. This paper attempts to find out the basis for a classification, starting from a new perspective: the structural elements are obtained from the etymologies of the lexicon commonly used, that is words like telemedicine, telehealth, telecare and telecure. This will promote a better understanding of communication technologies; (...) at the same time, it will allow to draw some reflection about health, medicine and care, and their semantic and relational nature. (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)

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

Community-level legal and policy innovations or “experiments” can be important levers to improve health. States and localities are empowered through the 10th Amendment of the United States Constitution to use their police powers to protect the health and welfare of the public. Many legal and policy tools are available, including: the power to tax and spend; regulation; mandated education or disclosure of information, modifying the environment — whether built or natural ; and indirect regulation. These legal and (...) policy interventions can be targeted to specific needs at the community level and are often relatively low-cost, but high impact interventions. As every community is different, effective laws and policies will vary. This freedom allows states and localities to, as Justice Louis Brandeis argued, truly serve as “laboratories of democracy.”. (shrink)

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

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)

Numerous social, economic and academic pressures can have a negative impact on representations of biomedical research. We review several of the forces playing an increasingly pernicious role in how health and science information is interpreted, shared and used, drawing discussions towards the role of narrative. In turn, we explore how aspects of narrative are used in different social contexts and communication environments, and present creative responses that may help counter the negative trends. As traditional methods of (...) class='Hi'>communication have in many ways failed the public, changes in approach are required, including the creative use of narratives. (shrink)

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

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

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

Only somewhat recently has a specific literature emerged focused on the ethics of engaging patient and community stakeholders in health research. This literature is informed by a broad range of disciplinary frameworks and norms. It also overlaps with – and diverges from – traditional research ethics scholarship in interesting and important ways. This volume is an effort to bring together, in one place, important perspectives on the ethics of stakeholder engagement in health research. Here, ethics, patient and community (...) stakeholders, and health-related research are all conceptualized broadly. (shrink)

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)

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)

The health alert caused by the COVID-19 pandemic and the lockdown have caused significant changes in people’s lives. Therefore, it has been essential to study the quality of life, especially in vulnerable populations, including children and adolescents. In this work, the psychological well-being, distribution of tasks and routines, as well as the physical activity done by children and adolescents from two samples: community and high abilities, have been analyzed. The methodology used was Mixed Method Research, through a survey conducted (...) online through social networks. The informants were the parents of the children and adolescents, 209 in the community sample and 116 in the high ability sample. The instrument used was a questionnaire implemented through Google Forms, with open and closed questions, including the Kidscreen-27 scale to measure well-being. The assessment of the adequacy of the physical activity levels was analyzed through ALCESTE. The results showed the absence of differences between students from community samples and those with high capacities in well-being and physical activity. Parents residing in Spain observed less play time in the high ability sample, and more time spent on homework, whether or not they have a diagnosis of high ability. It is concluded that these results question the misconceptions held about high ability students in terms of poorer personal adjustment and better interest in physical activities. (shrink)

Today, the earth is an interconnected globe humming with electronic transmissions-a chattering planet nestled in the provident silence of space. The ethical question is whether this is contributing to authentic human development and helping individuals and peoples to be true to their transcendent destiny. The new media are powerful tools for education, cultural enrichment, commercial activity, political participation, intercultural dialogue and understanding. They also can serve the cause of religion. Yet the new information technology needs to be informed and (...) guided by solidarity in the service of the common good bridging the digital divide within and among nations. The value-laden message of Western secular culture to people and traditional societies in many cases ill-prepared to evaluate it leads to widespread crisis, for example, in regard to marriage and family life. This technology can be a means for solving human problems, promoting the integral development of persons, creating a world governed by justice, peace, and love. It also can help men and women in their age-old search for self-understanding. Like today's world itself, the world of media, including the Internet, has been brought by Christ, inchoately yet truly, within the boundaries of the kingdom of God and placed in service to the word of salvation. (shrink)

Nurses and doctors who deal with human lives have started questioning their own decisions and practices particularly when there is an ethical dilemma. To survive competently within the profession and to make ethical decisions for the client’s safety, one needs to be equipped with knowledge pertaining to Bio-Ethics. This paper brings attention to a real life dilemma of a sixteen year old female child who had been sexually abused by one of her family friends. She insisted the school health (...) nurse to keep the information confidential, particularly from her parents. Consequently, the nurse had to confront a real dilemma regarding the disclosure of information to the parents of the victim. If the nurse respected the client’s autonomy to take her own decisions, then probably she may have put the client’s life at stake as she would not get any support, guidance and protection from further abuse. This paper will examine the role of health nurse or professionals in school setting for client safety. Moreover, this paper will also integrate moral reasoning by using the ethical decision making model by Patricia Chricham from Bioethics discipline. (shrink)

Background: Post-mortem needle biopsies have been used in resource-poor settings to determine cause of death and there is interest in using them in Bangladesh. However, we did not know how families and communities would perceive this procedure or how they would decide whether or not to consent to a post-mortem needle biopsy. The goal of this study was to better understand family and community concerns and decision-making about post-mortem needle biopsies in this low-income, predominantly Muslim country in order to design (...) an informed consent process. Methods: We conducted 16 group discussions with family members of persons who died during an outbreak of Nipah virus illness during 2004-2008 and 11 key informant interviews with their community and religious leaders. Qualitative researchers first described the post-mortem needle biopsy procedure and asked participants whether they would have agreed to this procedure during the outbreak. Researchers probed participants about the circumstances under which the procedure would be acceptable, if any, their concerns about the procedure, and how they would decide whether or not to consent to the procedure. Results: Overall, most participants agreed that post-mortem needle biopsies would be acceptable in some situations, particularly if they benefitted society. This procedure was deemed more acceptable than full autopsy because it would not require major delays in burial or remove organs, and did not require cutting or stitching of the body. It could be performed before the ritual bathing of the body in either the community or hospital setting. However, before consent would be granted for such a procedure, the research team must gain the trust of the family and community which could be difficult. Although consent may only be provided by the guardians of the body, decisions about consent for the procedure would involve extended family and community and religious leaders. Conclusions: The possible acceptability of this procedure during outbreaks represents an important opportunity to better characterize cause of death in Bangladesh which could lead to improved public health interventions to prevent these deaths. Obstacles for research teams will include engaging all major stakeholders in decision-making and quickly building a trusting relationship with the family and community, which will be difficult given the short window of time prior to the ritual bathing of the body. (shrink)

In den westlichen Industrienationen gilt das Prinzip der informierten Einwilligung als das Zentralelement medizinischer Forschungsethik. In anderen, stärker die Relationalität als die Individualität von Personen betonenden Kulturen hingegen werden medizinische Entscheidungen traditionell eher durch die Gemeinschaft bzw. ihr Oberhaupt getroffen. Um verschiedenen kulturellen Normen gerecht zu werden, wird international tätigen Forschungsteams häufig empfohlen, den Community Consent und den Informed Consent einzuholen. Ausschlaggebend soll dabei letztlich der Informed Consent des Individuums sein. Es soll die Teilnahme auch dann verweigern können, wenn die (...) Gemeinschaft bzw. ihr Repräsentant dem Vorhaben zugestimmt hat. Der Beitrag diskutiert, ob eine solche Kopplung von Community Consent und Informed Consent tatsächlich geeignet ist, den Ansprüchen beider Prinzipien gerecht zu werden. Es wird argumentiert, dass die Kopplung von Community Consent und Informed Consent ethisch problematisch ist, wenn der Gemeinschaft hierbei ein Vetorecht eingeräumt wird, das geeignet ist, die Realisation konträrer individueller Interessen und damit das Selbstbestimmungsrecht der Betroffenen zu unterlaufen. Um zu gewährleisten, dass in interkulturellen Forschungszusammenhängen sowohl der individuellen als auch der relationalen Autonomie von Personen angemessener Raum gewährt wird, wäre es empfehlenswert, den Informed Consent ausdrücklich mit einer Community Consultation zu koppeln. Hier käme die Entscheidung gegen, aber auch für eine Studienteilnahme in letzter Instanz klar dem Individuum zu, während die Vorzüge einer Einbeziehung der Gemeinschaft in den Entscheidungsfindungsprozess anerkannt und genutzt werden könnten. (shrink)

In den westlichen Industrienationen gilt das Prinzip der informierten Einwilligung als das Zentralelement medizinischer Forschungsethik. In anderen, stärker die Relationalität als die Individualität von Personen betonenden Kulturen hingegen werden medizinische Entscheidungen traditionell eher durch die Gemeinschaft bzw. ihr Oberhaupt getroffen. Um verschiedenen kulturellen Normen gerecht zu werden, wird international tätigen Forschungsteams häufig empfohlen, den Community Consent und den Informed Consent einzuholen. Ausschlaggebend soll dabei letztlich der Informed Consent des Individuums sein. Es soll die Teilnahme auch dann verweigern können, wenn die (...) Gemeinschaft bzw. ihr Repräsentant dem Vorhaben zugestimmt hat. Der Beitrag diskutiert, ob eine solche Kopplung von Community Consent und Informed Consent tatsächlich geeignet ist, den Ansprüchen beider Prinzipien gerecht zu werden. Es wird argumentiert, dass die Kopplung von Community Consent und Informed Consent ethisch problematisch ist, wenn der Gemeinschaft hierbei ein Vetorecht eingeräumt wird, das geeignet ist, die Realisation konträrer individueller Interessen und damit das Selbstbestimmungsrecht der Betroffenen zu unterlaufen. Um zu gewährleisten, dass in interkulturellen Forschungszusammenhängen sowohl der individuellen als auch der relationalen Autonomie von Personen angemessener Raum gewährt wird, wäre es empfehlenswert, den Informed Consent ausdrücklich mit einer Community Consultation zu koppeln. Hier käme die Entscheidung gegen, aber auch für eine Studienteilnahme in letzter Instanz klar dem Individuum zu, während die Vorzüge einer Einbeziehung der Gemeinschaft in den Entscheidungsfindungsprozess anerkannt und genutzt werden könnten. (shrink)

Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point (...) that DTC GT operates at the intersection of two different contexts: medicine on the one hand and the market on the other. Both fields differ strongly with regard to their standards of communication practices and the underlying normative assumptions regarding autonomy and responsibility. Following a short review of the ethical contexts of medical and commercial communication, we provide case examples for persuasive messages of DTC GT websites and briefly analyze their design with a multi-modal approach to illustrate some of their problematic implications. We observe three main aspects in DTC GT advertising communication: (1) the use of material suggesting medical professional legitimacy as a trust-establishing tool, (2) the suggestion of empowerment as a benefit of using DTC GT services and (3) the narrative of responsibility as a persuasive appeal to a moral self-conception. While strengthening and respecting the autonomy of a patient is the focus in medical communication, specifically genetic counselling, persuasive communication is the normal mode in marketing of consumer goods, presuming an autonomous, rational, independent consumer. This creates tension in the context of DTC GT regarding the expectation and normative assessment of communication strategies. Our analysis can even the ground for a better understanding of ethical problems associated with intersections of medical and commercial communication and point to perspectives of analysis of DTC GT advertising. (shrink)

Concerns about intercultural communication practices in child and family health were raised during a South Australian ethnographic study. The family partnership model was observed as a universal pedagogic tool introduced into the host organisation in 2003. It has a role in shaping and reshaping cultural production within child health practice. In this study, we draw on insights from postcolonial feminist scholarship together with three‐body analysis to critique the theoretical canons of care that inform intercultural communication in (...) the child and family health setting.We contend that although the family partnership model may be very useful, its intended universal application is problematic in the context of multiculture. Issues of race, gender and class were seemingly unattended when using a communication approach based in historical scientific rationalism. Liberal interpretations of discourses of equity and empathy arising out of contemporary models of communication were often adopted by child and family health nurses and protected them from seeing the inherent binaries that constrain practice. Insights from postcolonial feminist thinking enabled us to recognise the problems of applying theory to practice in a linear fashion. We demonstrate the use of three‐body analysis as a deconstruction strategy to refigure how theory might be understood and worked with in the multiculture that is Australia. (shrink)

Community engagement is increasingly recognized as a critical element of medical research, recommended by ethicists, required by research funders and advocated in ethics guidelines. The benefits of community engagement are often stressed in instrumental terms, particularly with regard to promoting recruitment and retention in studies. Less emphasis has been placed on the value of community engagement with regard to ethical good practice, with goals often implied rather than clearly articulated. This article outlines explicitly how community engagement can contribute to ethical (...) global health research by complementing existing established requirements such as informed consent and independent ethics review. The overarching and interlinked areas are respecting individuals, communities and stakeholders; building trust and social relationships; determining appropriate benefits; minimizing risks, burdens and exploitation; supporting the consent process; understanding vulnerabilities and researcher obligations; gaining permissions, approvals and building legitimacy and achieving recruitment and retention targets. (shrink)

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

Fundamentación: la educación integral del estudiante de Medicina incluye el desarrollo de las habilidades comunicativas y lingüísticas en idioma Inglés, que le posibiliten mantenerse informado y comunicarse en medios anglófonos. La prensa escrita es un medio de información que permite que los estudiantes reflexionen, valoren, interpreten y se comuniquen. Objetivo: Contribuir al desarrollo de las habilidades lingüísticas y comunicativas con la prensa escrita en clases de inglés. Método: Se realizó un estudio pre-experimental que consistió en elaborar ejercicios a partir de (...) la utilización de artículos de la prensa escrita relacionados con medicina y salud pública, como medios de enseñanza. El estudio se realizó con 40 estudiantes del quinto año de Medicina y 15 profesionales matriculados en un curso de posgrado de la Facultad de Ciencias Médicas de Mayabeque. Resultados: La información sobre aspectos de medicina y salud pública publicados en la prensa y los hábitos de lectura de la prensa de los estudiantes del quinto año era baja antes de la intervención y después de la puesta en práctica de la experiencia mejoró significativamente. Los resultados de los cuatro cortes evaluativos muestran la eficacia de la experiencia, por cuanto el desarrollo de las habilidades se comportó de manera ascendente. Conclusiones: Este sistema de trabajo facilitó la motivación de las clases, se desarrollaron habilidades lingüísticas y comunicativas y sirvió de base para fomentar el trabajo educativo, aumentó el vocabulario general y técnico de los estudiantes. Foundation: the medical students’ integral education includes the development of linguistic and communicative abilities in the English language, in such a way, they have the possibility to be informed and communicate properly in English-speaking contexts. The printing press is a means of information which allows them to reflect, valuate interpretate and communicate properly. Objective: to contribute to the development of linguistic and communicative abilities with the printing press in the English lessons Method: it was carried out a pre-experimental study which consisted in the elaboration of exercises related to the content of medical articles taken from the printing press. The study was carried out with 40 5th year medical students and 15 health professionals registered for a post graduated course of English in the Faculty of medicine from Mayabeque. Results: the information concerning medicine and public health published in the printing press and the 5th year medical students reading habits before putting into practice the didactic experience were low. Meanwhile, it improved considerably after its implementation. The results of the four evaluative breaks show the effectiveness of the didactic experience. The development of reading abilities was increased. Conclusions: this system of work facilitated motivation during the learning activities, linguistic and communicative abilities were developed considerably; it served as a base to promote educative work, and to increase the students general and technical vocabulary. (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)

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

This paper is particularly concerned with shame, sometimes considered the ‘master emotion’, and its possible role in affecting the consent process, specifically where that shame relates to the issue of diminished health literacy. We suggest that the absence of exploration of affective issues in general during the consent process is problematic, as emotions commonly impact upon our decision-making process. Experiencing shame in the healthcare environment can have a significant influence on choices related to health and healthcare, and may (...) lead to discussions of possibilities and alternatives being closed off. In the case of impaired health literacy we suggest that it obstructs the narrowing of the epistemic gap between clinician and patient normally achieved through communication and information provision. Health literacy shame prevents acknowledgement of this barrier. The consequence is that it may render consent less effective than it otherwise might have been in protecting the person's autonomy. We propose that the absence of consideration of health literacy shame during the consent process diminishes the possibility of the patient exerting full control over their choices, and thus bodily integrity. (shrink)

Background:Information sharing is one of the most important means of public health nurses collaborating with other healthcare professionals and community members. There are complicated ethical issues in the process.Research objectives:To describe the ethical dilemmas associated with client information sharing that Japanese public health nurses experience in daily practice and to clarify their decision-making process to resolve these dilemmas.Research design:Data were collected using a three-phase consensus method consisting of semi-structured interviews, self-administered questionnaires and a group interview.Participants and (...) research context:We surveyed administrative public health nurses in Shizuoka Prefecture, Japan. The semi-structured interviews were carried out with 12 administrative public health nurses, and the self-administered questionnaires were sent to all 899 administrative public health nurses. The group interview was carried out with eight administrative public health nurses.Ethical considerations:Ethical approval was granted by the ethics committee of the School of Health Sciences, Nagoya University, Japan (8-158, 9-130).Findings:Information-sharing ethical dilemmas occurred most often when clients’ decisions did not coincide with the nurses’ own professional assessments, particularly when they faced clinical issues that were inherently ambiguous. In their decision-making processes, nurses prioritised ‘protection of health and life’.Discussion:These findings suggest that, above all, they sought to address urgent risks to clients’ lives while upholding the principle of client autonomy as much as possible. In such cases, the nurses made decisions regarding whether to share information about the client depending on the individual situation.Conclusion:Public health nurses should protect the client’s health while taking into consideration their relationship with the client. (shrink)

Disease control has increasingly shifted towards large scale, disease specific, public health interventions. The emerging problems of HIV, hepatitis, malaria, typhoid, tuberculosis, childhood pneumonia, and meningitis have made community based trials of interventions a cost effective long term investment for the health of a population. The authors conducted this study to explore the complexities involved in obtaining informed consent to participation in rural north India, and how people there make decisions related to participation in clinical research.

Proper utilization of antenatal and postnatal care services plays an important role in reducing the maternal mortality ratio and infant mortality rate. This paper assesses the utilization of health care services during pregnancy, delivery and post-delivery among rural women in Uttar Pradesh and examines its determinants. Data from a baseline survey of UP Community Mobilization project was utilized. A cross-sectional sample of currently married women who delivered a baby 15 months prior to the survey was included. Information was (...) collected from 2208 women spread over five districts of UP. Information on socio-demography characteristics, utilization of antenatal care, delivery and postnatal care services was collected. To examine the determinants of utilization of maternal health services, the variables included were three ANC visits, institutional delivery and PNC within 42 days of delivery. Separate multilevel random intercept logistic regressions were used to account for clustering at a block and gram panchayat level after adjusting for covariates. Eighty-three percent of women had any ANC. Of them, 61% reported three or more ANC visits. Although 68% of women delivered in a health facility, 29% stayed for at least 48 h. Any PNC within 42 days after delivery was reported by 26% of women. In the adjusted analysis, women with increasing number of contacts with the health worker during the antenatal period, women exposed to mass-media and non-marginalized women were more likely to have at least three ANC visits during pregnancy. Non-marginalized women and women with at least three ANC visits were more likely than their counterparts to deliver in an institution. Contacts with health worker during pregnancy, marginalization, at least three ANC visits and institutional delivery were the strong determinants for utilization of PNC services. Self-help group membership had no association with the utilization of maternal health services. Utilization of maternal health services was low. Contact with the health worker and marginalization emerged as important factors for utilization of services. Although not associated with the utilization, SHGs can be used for delivering health care messages within and beyond the group. (shrink)

Purpose This study aims to explore how health informatics can underpin the successful delivery of recovery-orientated healthcare, in rural and remote regions, to achieve better mental health outcomes. Recovery is an extremely social process that involves being with others and reconnecting with the world. Design/methodology/approach An interpretivist study involving 27 clinicians and 13 clients sought to determine how future expenditure on ehealth could improve mental health treatment and service provision in the western Murray Darling Basin of New (...) South Wales, Australia. Findings Through the use of targeted ehealth strategies, it is possible to increase both the accessibility of information and the quality of service provision. In small communities, the challenges of distance, access to healthcare and the ease of isolating oneself are best overcome through a combination of technology and communal social responsibility. Technology supplements but cannot completely replace face-to-face interaction in the mental health recovery process. Originality/value The recovery model provides a conceptual framework for health informatics in rural and remote regions that is socially responsible. Service providers can affect better recovery for clients through infrastructure that enables timely and responsive remote access whilst driving between appointments. This could include interactive referral services, telehealth access to specialist clinicians, GPS for locating clients in remote areas and mobile coverage for counselling sessions in “real time”. Thus, the technology not only provides better connections but also adds to the responsiveness of any treatment available. (shrink)

Contemporary health care relies on electronic devices. These technologies are not ethically neutral but change the practice of care. In light of Sennett's work and that of other thinkers one worry is that "e-care"aEuro"care by means of new information and communication technologies-does not promote skilful and careful engagement with patients and hence is neither conducive to the quality of care nor to the virtues of the care worker. Attending to the kinds of knowledge involved in care work (...) and their moral significance, this paper explores what "craftsmanship" means in the context of medicine and health care and discusses whether today the care giver's craftsmanship is eroded. It is argued that this is a real danger, especially under modern conditions and in the case of telecare, but that whether it happens, and to what extent it happens, depends on whether in a specific practice and given a specific technology e-carers can develop the know-how and skill to engage more intensely with those under their care and to cooperate with their co-workers. (shrink)

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making (...) and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making.Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments.DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system.Trial RegistrationISRCTN89993391. (shrink)