Ethical and Professional Issues in the Implementation of Population-Level Parenting Interventions

This article discusses various ethical and professional issues associated with the implementation of a public health approach to the implementation of parenting interventions. The Triple P System Population Trial in the United States and the Every Family Initiative in Australia both employ the Triple P–Positive Parenting Program as a multilevel public health intervention aimed at strengthening parenting and family support community-wide. Implications of this experience are discussed for the rollout of large-scale parenting programs, with particular attention to a self-regulation framework that is useful in dealing with professional issues. Examples drawn from these initiatives illustrate the interaction between ethical and professional issues and the broader sociopolitical and cultural context within which an intervention is delivered. A sampling of issues includes multidisciplinary and competitive work environments, ensuring adequate population reach, promotion of accurate program information, anticipating potential barriers, and addressing organizational considerations.     

The role of ethics in information technology decisions: a case-based approach to biomedical informatics education

The purpose of this paper is to propose a case-based approach to instruction regarding ethical issues raised by the use of information technology (IT) in healthcare. These issues are rarely addressed in graduate degree and continuing professional education programs in health informatics. There are important reasons why ethical issues need to be addressed in informatics training. Ethical issues raised by the introduction of information technology affect practice and are ubiquitous. These issues are frequently among the most challenging to young practitioners who are ill prepared to deal with them in practice. First, the paper provides an overview of methods of moral reasoning that can be used to identify and analyze ethical problems in health informatics. Second, we provide a framework for defining cases that involve ethical issues and outline major issues raised by the use of information technology. Specific cases are used as examples of new dilemmas that are posed by the introduction of information technology in healthcare. These cases are used to illustrate how ethics can be integrated with the other elements of informatics training. The cases discussed here reflect day-to-day situations that arise in health settings that require decisions. Third, an approach that can be used to teach ethics in health informatics programs is outlined and illustrated.     

Towards responsible system development in health services: A discourse analysis study of design conflict resolution tactics

We set out to examine design conflict resolution tactics used in development of large information systems for health services and to outline the design consequences for these tactics. Discourse analysis methods were applied to data collected from meetings conducted during the development of a web-based system in a public health context. We found that low risk tactics were characterized by design issues being managed within the formal mandate and competences of the design group. In comparison, high risk tactics were associated with irresponsible compromises, i.e. decisions being passed on to others or to later phases of the design process. The consequence of this collective disregard of issues such as responsibility and legitimacy is that the system design will be impossible to implement in factual health service contexts. The results imply that downstream responsibility issues have to be continuously dealt with in system development in health services.     

Using the critical incident technique to define a minimal data set for requirements elicitation in public health

The introduction of computer-based information systems (ISs) in public health provides enhanced possibilities for service improvements and hence also for improvement of the population's health. Not least, new communication systems can help in the socialization and integration process needed between the different professions and geographical regions. Therefore, development of ISs that truly support public health practices require that technical, cognitive, and social issues be taken into consideration. A notable problem is to capture 'voices' of all potential users, i.e., the viewpoints of different public health practitioners. Failing to capture these voices will result in inefficient or even useless systems. The aim of this study is to develop a minimal data set for capturing users' voices on problems experienced by public health professionals in their daily work and opinions about how these problems can be solved. The issues of concern thus captured can be used both as the basis for formulating the requirements of ISs for public health professionals and to create an understanding of the use context. Further, the data can help in directing the design to the features most important for the users.     

Ethical issues concerning genetic testing and screening in public health

Genetic testing (predictive analysis that determines genetic alterations in individuals for clinical purposes) and screening (programs that identify persons within a subpopulation who may be at a higher risk for a genetic disease or condition) are increasingly utilized to promote and improve the public's health. The proliferate use of genetic testing and screening may improve public health outcomes, but it also implicates significant ethical, legal, and social concerns. Within the context of conflicting ethical values from the individual and public health perspectives, individual values such as informed consent and privacy and discrimination protections must be respected. Legal and ethical attempts to exceptionalize genetic tests and information (as compared to other health information) to protect privacy and prevent discrimination are well intended, but can also be unjust and impractical. Respect for individual ethical rights has limits. Principles of public health ethics justify voluntary genetic testing and screening and sharing of data for population-based health purposes. Thus, individual rights should not always trump the use of genetic tests or screening programs (or information derived therefrom) for legitimate public health purposes.     

Third generation participatory design in health informatics--making user participation applicable to large-scale information system projects

Participatory Design (PD) methods in the field of health informatics have mainly been applied to the development of small-scale systems with homogeneous user groups in local settings. Meanwhile, health service organizations are becoming increasingly large and complex in character, making it necessary to extend the scope of the systems that are used for managing data, information and knowledge. This study reports participatory action research on the development of a PD framework for large-scale system design. The research was conducted in a public health informatics project aimed at developing a system for 175,000 users. A renewed PD framework was developed in response to six major limitations experienced to be associated with the existing methods. The resulting framework preserves the theoretical grounding, but extends the toolbox to suit applications in networked health service organizations. Future research should involve evaluations of the framework in other health service settings where comprehensive HISs are developed.     

Ethics and health policies

The aim of this essay is highlight the need to establish an ethical frame of reference to formulate public health interventions. Politics and public health programs are viewed as an interaction between people where their own beliefs, moral values and expectations come together. One of the main reasons for the failure of public health interventions is that often they do not focus on the impact they will have in people's belief system and moral values. Aside from economic and epidemiological considerations, public health interventions must take into account essential human principles as self-determination, autonomy, justice, beneficence and non maleficence, social inclusion, equity, co-responsibility, citizenship, pluralism, solidarity, the right to information, privacy, confidentiality and fair treatment among others. International experiences in the establishment of ethical principles that regulate the medical profession constitute a good starting point to show that is possible to achieve a consensus for an ethical frame of reference to formulate public health policies; furthermore the accomplishment of this ethical framework will make public health more humane and dignified     

Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers

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

The campaign against TB: governments must commit themselves. TB in Africa

This article presents an interview with Pierre Chaulet on the campaign against tuberculosis (TB) in Africa. Chaulet noted during the 9th IUATLD Conference of the Africa Region that the national TB control programs have taken on a new commitment in Africa since the declaration of TB as a global emergency in the 1990s. The TB control program package consists of five principal components: 1) political will of the government and its commitment to support the program; 2) case detection; 3) initiation of short course chemotherapy among detected cases; 4) ensuring the regular supply of essential anti-TB drugs; and 5) establishing a registry and reporting system for program monitoring and evaluation. Of the 40 African countries participating in the conference, 30 have efficient programs. Comparing the management of National TB Control Programs in Francophone and Anglophone Africa, it is noted that both are complementary, although generally, public health issues are more easily integrated into the medical training in the Anglophone countries than they are in the Francophone. Anglophone uses a more comprehensive approach to public health while countries in the Francophone practiced a more traditional university centralization. Finally, Chaulet gives his comment on the role of WHO in addressing concerns over the financial issues involved in TB Control Programs, particularly in the mobilization of resources from nongovernmental organizations and international institutions.     

Urban bioethics: adapting bioethics to the urban context.

Urban bioethics is an area of inquiry within the discipline of bioethics that focuses on ethical issues, problems, and conflicts relating to medicine, science, health care, and the environment that typically arise in urban settings. Urban bioethics challenges traditional bioethics (1) to examine value concerns in a multicultural context, including issues related to equity and disparity, and public health concerns that may highlight conflict between individual rights and the public good, and (2) to broaden its primary focus on individual self-determination and respect for autonomy to include examination of the interests of family, community, and society. Three features associated with urban life-density, diversity, and disparity-affect the health of urban populations and provide the substrate for identifying ethical concerns and value conflicts and creating interventions to affect population health outcomes. The field of urban bioethics can be helpful in creating ethical foundations and principles for public health practice, developing strategies to respect diversity in health policy in a pluralistic society, and fostering collaborative work among educators, social scientists, and others to eliminate bias among health professionals and health care institutions to enhance patients' satisfaction with their care and ultimately affect health outcomes. Educational programs at all levels and encompassing all health professions are needed as a first step to address the perplexing and important problem of eliminating health disparities. Urban bioethics is both contributing to the social science literature in this area and helping educators to craft interventions to affect professional attitudes and behaviors.     

Socio-technical issues and challenges in implementing safe patient handovers: Insights from ethnographic case studies

PurposeIneffective handovers in patient care, including those where information loss occurs between care providers, have been identified as a risk to patient safety. Computerization of health information is often offered as a solution to improve the quality of care handovers and decrease adverse events related to patient safety. The purpose of this paper is to broaden our understanding of clinical handover as a patient safety issue, and to identify socio-technical issues which may come to bear on the success of computer based handover tools.MethodsThree in depth ethnographic case studies were undertaken. Field notes were transcribed and analyzed with the aid of qualitative data analysis software. Within case analysis was performed on each case, and subsequently, cross case analyses were performed.ResultsWe identified five types of socio-technical issues which must be addressed if electronic handover tools are to succeed. The inter-dependencies of these issues are addressed in relation to arenas in which health care work takes place.ConclusionsWe suggest that the contextual nature of information, ethical and medico-legal issues arising in relation to information handover, and issues related to data standards and system interoperability must be addressed if computerized health information systems are to achieve improvements in patient safety related to handovers in care.     

Newborn dried bloodspot screening: mapping the clinical and public health components and activities

PurposeTo define components and activities of the entire Newborn Dried Bloodspot Screening process, highlighting long-term follow-up—both clinical and public health—as a basis for defining requirements for information systems to support the process.MethodsConvene a workgroup of experts involved in various aspects of Newborn Dried Bloodspot Screening and conduct an analysis of the components and activities involved, applying Business Process Analysis, part of a collaborative requirements definition process conceived by the Public Health Informatics Institute.ResultsThe Newborn Dried Bloodspot Screening workgroup identified four primary business processes: screening, confirmatory/diagnostic testing, transition to long-term follow-up, and intervention management (long-term follow-up). Long-term follow-up includes care coordination/ongoing treatment, continuous quality improvement, knowledge generation, and knowledge management and dissemination. In addition, the Newborn Dried Bloodspot Screening workgroup identified public health care coordination as a new and important role to assure successful long-term follow-up. This role is defined in some detail.ConclusionSuccessful newborn screening systems rely on effective partnerships to ensure that there is appropriate screening, diagnosis, and follow-up. Coordinating care across multiple settings and service providers, ensuring continuity of care over time, and generating new knowledge about heritable disorders requires information systems that can fully support the process. Developing such information systems requires a clear understanding of the Newborn Dried Bloodspot Screening process and documentation of the roles and responsibilities for all involved. Business process analysis can be applied to Newborn Dried Bloodspot Screening and other child health programs to help achieve that outcome.     

Defining health

Societies are here postulated as autopoietic systems, that is, they are living unities the components of which maintain processes that ensure the production of such components. Autopoietic systems are circularly involved in maintaining themselves and society partakes of this self-maintaining characteristic. Health is a societal concept applied to its component individual human beings and describes their fitness for the survival of the society. Medicine that treats disease is concerned with the individual and his survival. Health caring institutions and concepts (right to health care, health insurance, public health programs) are all societal endeavours that are not designed for individual benefit, but constitute an increasingly important survival strategy of societal unities. It can be anticipated that the most important medical issues in the future (allocation of resources, genetic manipulation, population growth control, right to medical care) will concern the disjunctive efforts of medicine and public health as the respective survival strategies of individuals and societies.     

New directions in eHealth communication: Opportunities and challenges

Objective

This article reviews key communication issues involved in the design of effective and humane eHealth applications to help guide strategic development and implementation of health information technologies.

Background

There is a communication revolution brewing in the delivery of health care and the promotion of health fueled by the growth of powerful new health information technologies.

Conclusion

The development, adoption, and implementation of a broad range of new eHealth applications (such as online health information websites, interactive electronic health records, health decision support programs, tailored health education programs, health care system portals, mobile health communication programs, and advanced telehealth applications) holds tremendous promise to increase consumer and provider access to relevant health information, enhance the quality of care, reduce health care errors, increase collaboration, and encourage the adoption of healthy behaviors.

Practice implications

With the growth of new and exciting health information technology opportunities, however, comes the daunting responsibility to design interoperable, easy to use, engaging, and accessible eHealth applications that communicate the right information needed to guide health care and health promotion for diverse audiences.     

A reflection on the challenge of protecting confidentiality of participants while disseminating research results locally

Background

Researchers studying health systems in low-income countries face a myriad of ethical challenges throughout the entire research process. In this article, we discuss one of the greatest ethical challenges that we encountered during our fieldwork in West Africa: the difficulty of protecting the confidentiality of participants (or groups of participants) while locally disseminating results of health systems research to stakeholders.

Methods

This reflection is based on experiences of authors involved in conducting evaluative research of interventions aimed at improving health systems in West Africa. Our observation and collaboration with the research projects’ stakeholders informed our analysis. Examples from two research projects illustrate the issues raised.

Results

We found that in some cases there is a risk that local stakeholders may be able to identify research participants, or at least groups of participants, during the dissemination of results, even if they are anonymized. Four factors can interact and influence this challenge: 1) hierarchical structure, 2) small milieu, 3) immersion in a few sites, and 4) vested interests of decision-makers. For example, local stakeholders can sometimes find out when and where the data were collected. Moreover, health systems, especially rural healthcare centres, in West African countries can be small settings, so people often know each other. Some types of participants have unique characteristics or positions in the health system that may make them more easily identifiable by local stakeholders familiar with the environment. We identified a number of potential strategies that can help researchers minimize this difficulty and improve ethical research practices. These strategies pertain to the development of the study design, the process of obtaining informed consent, the dissemination of results, and the researchers’ reflexivity.

Conclusion

Researchers must develop and adopt strategies that enable them to respect their promise of confidentiality while effectively disseminating sometimes sensitive results. Reflections surrounding ethical issues in global health research should be deepened to better address how to manage competing ethical responsibilities while promoting valuable research uptake.

     

Efficacy of public health surveillance systems

Public health surveillance system (PHSS) serves for continuous and systematic data collection, analysis and interpretation, in order to enable planning, implementation and evaluation of public health practice. PHSS should alert to events (usually unwanted), assist to create public health policy and strategies, document effects and achieving the goals as well as setting public health priorities. Surveillance systems monitor communicable and non-communicable diseases, health resources and public health programs and interventions. The main drawback of the existing PHSS is fragmentation and delay of information, usually not up-to-date. Modern information and communication technology enables getting data from hospitals and other health information systems directly, and use them for surveillance. Our model of surveillance system appeared as not standalone but an integrated system getting data that are by-product of frontline workers. Therefore, the electronic health records should be the source of data for disease surveillance. Medical, nurse and similar schools as well as the Ministry of Health and health institutions could be data sources for health personnel surveillance. Medical devices can be monitored by data coming from institutions and bodies dealing with such devices. Public health programs defined by institutions and bodies can be monitored by them and others taking part in implementation. Therefore, they all can be the source of data for surveillance of public health programs and interventions. Without such systems, any rationalization in health care and better quality is not possible. Therefore, the present public health surveillance system should be improved, as we have suggested, by using current information and communication technology and integrating the data that are by-product of the frontline worker, and by including the end users in system development at the very beginning.     

Genetic information and testing in insurance and employment: technical, social and ethical issues

The present paper examines the professional and scientific views on the social, ethical and legal issues that impact on genetic information and testing in insurance and employment in Europe. For this purpose, many aspects have been considered, such as the concerns of medical geneticists, of the insurers and employers, of the public, as well as the regulatory frameworks and unresolved issues. The method used was primarily the review of the technical, social, economical and ethical aspects of advances in genetics and the concerns of parties who are involved, that is, the insurers, the employers and the public. The existing guidelines and legislation on this topic were also reported. Then, the method was to examine the issues debated by these parties in Europe, as well as by 47 experts from 14 European countries invited to an international workshop organized by the European Society of Human Genetics Public and Professional Policy Committee in Manchester, UK, 25-27 February 2000. The result of this was that the most important issues raised by genetic information and testing in insurance and employment in Europe include a need for clear definitions of terms used in genetics, declaring the grounds on which genetic information is or is not used, and promoting confidence between the public and the insurance industry. There is currently very little use of genetic information in relation to employment, but the situation should be kept under review.     

Stakeholder engagement in policy development: challenges and opportunities for human genomics

Along with rapid advances in human genomics, policies governing genomic data and clinical technologies have proliferated. Stakeholder engagement is widely lauded as an important methodology for improving clinical, scientific, and public health policy decision making. The purpose of this paper is to examine how stakeholder engagement is used to develop policies in genomics research and public health areas, as well as to identify future priorities for conducting evidence-based stakeholder engagements. We focus on exemplars in biobanking and newborn screening to illustrate a variety of current stakeholder engagement in policy-making efforts. Each setting provides an important context for examining the methods of obtaining and integrating informed stakeholder voices into the policy-making process. While many organizations have an interest in engaging stakeholders with regard to genomic policy issues, there is broad divergence with respect to the stakeholders involved, the purpose of engagements, when stakeholders are engaged during policy development, methods of engagement, and the outcomes reported. Stakeholder engagement in genomics policy development is still at a nascent stage. Several challenges of using stakeholder engagement as a tool for genomics policy development remain, and little evidence regarding how to best incorporate stakeholder feedback into policy-making processes is currently available.     

The involvement of genome researchers in high school science education.

The rapid accumulation of genetic information generated by the Human Genome Project and related research has heightened public awareness of genetics issues. Education in genome science is needed at all levels in our society by specific audiences and the general public so that individuals can make well-informed decisions related to public policy and issues such as genetic testing. Many scientists have found that an effective vehicle for reaching a broad sector of society is through high school biology courses. From an educational perspective, genome science offers many ways to meet emerging science learning goals, which are influencing science teaching nationally. To effectively meet the goals of the science and education communities, genome education needs to include several major components-accurate and current information about genomics, hands-on experience with DNA techniques, education in ethical decision-making, and career counseling and preparation. To be most successful, we have found that genome education programs require the collaborative efforts of science teachers, genome researchers, ethicists, genetic counselors, and business partners. This report is intended as a guide for genome researchers with an interest in participating in pre-college education, providing rationale for their involvement and recommendations for ways they can contribute, and highlighting a few exemplary programs. World Wide Web addresses for all of the programs discussed in this report are given in Table 1. We are developing a database of outreach programs offering genetics education () and request that readers submit an entry describing their programs. We invite researchers to contact us for more information about activities in their local area.     

Leveraging health informatics to foster a smart systems response to health disparities and health equity challenges

Informaticians are challenged to design health information technology (IT) solutions for complex problems, such as health disparities, but are achieving mixed results in demonstrating a direct impact on health outcomes. This presentation of collective intelligence and the corresponding terms of smart health, knowledge ecosystem, enhanced health disparities informatics capacities, knowledge exchange, big-data, and situational awareness are a means of demonstrating the complex challenges informatics professionals face in trying to model, measure, and manage an intelligent and smart systems response to health disparities. A critical piece in our understanding of collective intelligence for public and population health rests in our understanding of public and population health as a living and evolving network of individuals, organizations, and resources. This discussion represents a step in advancing the conversation of what a smart response to health disparities should represent and how informatics can drive the design of intelligent systems to assist in eliminating health disparities and achieving health equity.