Data Privacy in the Time of Plague

Members of the public and stakeholder groups depend on public health agencies to safeguard the health and safety of their families and communities. Public health officials are accountable both to the public and to elected officials and governing bodies with oversight responsibilities [1]. Moreover, United States Federal agencies such as the Centers for Disease Control and Prevention (CDC), which employ many professional epidemiologists, scientists, administrators, and other professionals recognized as experts in their field, enjoy well‐deserved international reputations for excellence in public health research and practice. Similarly, academic institutions, including schools of public health and medicine, also employ many outstanding public health scientists who are accountable to their employer, students, their profession, funding agencies, and the public. Public health professionals, health advocates, elected officials, and other persons with vested interests in the integrity, well‐being, and continued progress of the public health enterprise have witnessed a range of ethical dilemmas and issues involving public health agencies and biomedical institutions. These ethical concerns, including some cases brought to public attention by whistle‐blowers, have involved federal, state, or local health agencies as well as major universities. Focus groups have suggested that ethical issues encountered by public health practitioners in the United States relate to public–private partnerships and collaborations, the allocation of scarce resources, setting of priorities, and choosing among different groups and health needs, the collection and use of data and information, and politics and relationships with other government officials and legislative bodies [2]. Surveys of public health practitioners demonstrate that ethical issues such as conflicts of interest and political pressure occur at the state and local levels [1, 2]. Other reported ethical problems included reports of conflicts of interest, instances of inadvertent release of confidential medical information by leading government agencies and health care organizations and institutions, and charges by government scientists that their research findings had been delayed or altered. These controversies occur at the intersection of politics and public health, partly because of the importance of these public health and biomedical research institutions to the public good. Alleged instances of conflicts of interest, retaliation against whistle‐blowers, and other ethical problems can also be viewed in the context of public health ethics, organizational ethics, and professional ethics.

About 90% of the biomedical data accessible to researchers was created in the last two years. These data have a very meaningful impact both in creating public policies on health, as well as public health research. This certainly implies complex technical problems on how to store, analyse and distribute data, but it also brings relevant epistemological issues. In this workshop we will present some of such problems and discuss how epistemic innovation is key in order to tackle ethical issues related to the use of big data in public health research. Databases implied in public health research are so huge that they rise relevant questions about how scientific method is applied, such as what counts as evidence of a hypothesis when data can not be directly apprehended by humans, how to distinguish correlation from causation, or in which cases the provider of a database can be considered co-author of a research paper. To consider such issues nowadays, current protocols do not hold, and we need innovation in methodological and epistemic procedures. At the same time, due to the fact that a relevant deal of such biomedical data is linked to individual people, and how medical data can be used to predict and transform human behavior, there are ethical questions difficult to solve as they imply new challenges. Some of them are related to communication issues, so patients and citizens understand these new ethical problems that didn't arise before the development of big data; others relate to the way in which public health researchers can and can't store, analyse and distribute information, and some others relate to the limits on which technologies are ethically, safe and which ones bring erosion of basic human rights. The four contributions in the workshop analyse these questions in some detail. During the workshop we will present a coherent understanding on what is epistemic innovation, some logical tools necessary for its development, and then we will discuss several cases on how epistemic innovation applies to different aspects of public health research, also commenting its relevance when tackling ethical problems that may arise. Key messages The workshop deepens the ethical and epistemological innovations involved in public health policies and research, specially related to big data. The workshop analyses novel aspects of public health ethics

ObjectiveOur presentation will explain current use, and barriers to use, of reproducible research practices in public health. We will also introduce a set of modules for researchers wishing to increase their use of reproducible research practices.IntroductionAn important goal of surveillance is to inform public health interventions that aim to reduce the burden of disease in the population. Ensuring accuracy of results is paramount to achieving this goal. However, science is currently facing a “reproducibility crisis” where researchers have found it difficult or impossible to reproduce study results. Organized and well-documented statistical source code that is publicly available could increase research reproducibility, especially for research relying on publicly available surveillance data like the BRFSS, NHANES, GSS, SEER, and others. As part of our overall goal to improve training around reproducible research practices, we surveyed public health data analysts to determine current practices and barriers to code sharing.MethodsWe conducted a cross-sectional web-based survey about code organization, documenting, storage, and sharing. We surveyed public health scientists who reported recently conducting statistical analyses for a report or manuscript. A total of 247 of 278 screened eligible to filled out the survey, and 209 answered every applicable question. We used traditional descriptive statistics and graphs to examine the survey data.ResultsMost participants reported using some promising coding practices, with 67% including a prolog to introduce the code and 85% including comments in statistical code to explain operations and analyses. Of 10 common code organization strategies (e.g., naming variables logically, using white space), most (82%) respondents reported employing at least three of the strategies and just under half (47%) reported using five or more. Over half of participants (59%) reported code was developed or checked by two or more people. Many participants also reported promising file management habits for data and code used in publications. Three-quarters (75%) had a variable dictionary to accompany the dataset used, 48% created clean versions of code files, and 64% created clean versions of data files at the time of publication. Forty three percent of participants reported that if they suddenly left their current position, it would not be easy for others to find their statistical code files. Public code sharing was much less common among participants with just 9% reporting sharing code publicly from a recent publication and 20% of those surveyed reported ever having shared code publicly.The top two barriers to using reproducible research practices were lack of training in reproducible research (n=108) and data privacy issues (n=105). Journals and funders not requiring reproducible practices were barriers selected by 94 and 84 participants, respectively. Few participants identified fear of errors being discovered (n=26) or a lack of workplace incentives (n=32) as barriers.ConclusionsMost participants were using some promising practices for organizing and formatting statistical code but few were sharing statistical code publicly. The second most frequently identified barrier to using reproduciible practices was data privacy, which could prohibit easily sharing a data source. With surveillance data often being publicly available, researchers working with surveillance data have overcome this top barrier without any change to current research practices. Researchers using surveillance data could greatly increase research reproduciblity by adopting promising practices for code formatting, like using logical variable names and limiting line length, and posting code in a public repository like GitHub.To overcome the top barrier to use of reproducible research practices, lack of training, we developed brief training modules on formatting, documenting, and sharing statistical code and data. As part of our presentation we will introduce and provide access to these online modules. The introduction will focus on the relevant modules for surveillance data users, which include statistical code formatting and statistical code sharing via GitHub.With fewer barriers to practicing reproducible research, public health researchers using surveillance data have the opportunity to be leaders in improving the adoption of reproducible research practices and subsequently improving the quality of research we rely on to improve public health.

Public health reflects a broad variety of activities, with the ultimate goal of reducing disease mortality and morbidity and promoting health of the population as a whole. In the past, population health was measured by a relative absence of diseases, and the focus of public health research and practice was on the control of such diseases (especially communicable and infectious ones). However, more recently, a broader definition of health has been recognized. The World Health Organization views health as not just an absence of something, namely disease, but as a resource for realizing higher aspirations, satisfying needs, and coping with changes in the environment (Young, 1998). With this conceptualization being more widely adopted, the focus of population health has broadened to include social, environmental, and behavioral factors that may jeopardize health, placing individuals at risk for disease. Consequently, there is increased interest in including behavioral science and theory in the dialogue of public health research (Muehrer et al., 2002). Public health efforts aimed at pediatric populations have focused on either preventing problematic health outcomes in children (e.g., injury, childhood obesity, social/emotional problems) or preventing health risk behaviors associated with adult-onset chronic diseases (e.g., smoking prevention to reduce cancer or heart disease). Public health and population-based research and practice have not traditionally been the focus of pediatric psychology. Few articles submitted or published in the Journal have taken a public health focus (Kazak, 2002; La Greca, 1997; Roberts, 1992). However, recent surveys of pediatric psychologists and commentaries on the state of the field of pediatric psychology suggest the field is evolving and expanding. For instance, pediatric psychologists view primary prevention of poor health outcomes and the promotion of optimal physical and mental health in children to be of high priority (Brown & Roberts, 2000; Roberts, 1992). These sentiments are not germane solely to the pediatric psychology community; they are echoed by national health organization priorities and leaders in prevention science research calling for primary prevention and health promotion efforts to begin early in life and to include children, their families, schools, and communities (Perry, 2000; Stokols, 1996). Given the recent importance assigned to prevention of poor health outcomes and health promotion in pediatric psychology and the broader scientific community, this seems a fitting time to highlight current pediatric public health research. In the solicitation of articles for this special issue, we sought articles in the area of pediatric psychology that are related to disease prevention, including primary and secondary prevention efforts. We also were interested in receiving articles that included studies of surveillance that pertain to pediatric populations, issues related to pediatric psychology in rural settings, delivery of and access to care in pediatric populations, economic implications of pediatric psychological services, and health disparities in pediatric populations, as well as articles addressing policy regarding the interface between pediatric psychology and public health. A broad net was cast to attract submissions from individuals of different disciplines, including pediatric psychologists, epidemiologists, health service researchers, and prevention scientists. We received a set of high-quality manuscripts, and include in this special issue articles related to injury prevention and dissemination/diffusion efforts directed at substanceabuse and obesity prevention.

Digital ethnography is proposed in this theoretical paper as a methodological innovation for investigating transpersonal care phenomena in contemporary public health contexts. The relevance of this research to public health is considered paramount, as the importance of holistic, spiritually integrated approaches to care that transcend traditional biomedical models is increasingly being recognized by healthcare systems globally. A new theoretical framework, termed the Digital Transpersonal Care Framework (DTCF), has been developed and is presented, which represents a significant departure from existing methodologies in public health research. The novelty of DTCF is found in its unique integration of three previously disconnected domains: transpersonal nursing theory, digital anthropological methods, and consciousness studies, through which an unprecedented approach to understanding spiritual dimensions of health in digital environments has been created. Unlike traditional ethnographic methods that are confined to physical spaces or existing digital health research that focuses primarily on technological functionality, the consciousness-based, spiritual aspects of healing relationships as they manifest in online environments are specifically addressed by DTCF. Building on Watson’s (2008) Transpersonal Caring Theory and recent developments in digital anthropology, it is argued that unique affordances for capturing the multidimensional nature of transpersonal experiences that are increasingly relevant to public health practice are offered by digital ethnography. Through systematic analysis of methodological literature and theoretical frameworks, a comprehensive approach has been developed that addresses three critical gaps in public health research. Firstly, the limitations of traditional ethnography in capturing transpersonal phenomena that are essential to holistic public health approaches are addressed. Secondly, the need for methodological tools that can investigate collective consciousness and spiritual dimensions of healing in digital spaces, which have become integral to modern healthcare delivery, is recognized. Thirdly, the absence of theoretical frameworks linking digital methods with transpersonal theory in ways that can inform public health policy and practice is identified. The theoretical contribution is found in the conceptualization of digital spaces as legitimate fields for transpersonal experiences and the proposal of specific methodological protocols for their investigation within public health contexts. Profound implications for public health practice are held by this framework, with new ways to understand and facilitate healing relationships in telehealth settings, online support communities, and digital mental health interventions being offered. The DTCF is found to be particularly useful for public health as evidence-based approaches to integrate spiritual care into digital health services are provided, the growing need for culturally sensitive healthcare delivery in diverse online populations is addressed, and methodological tools to evaluate the effectiveness of consciousness-based interventions in improving health outcomes across populations are offered.

Public health researchers and practitioners have begun to recognize the dynamic nature of disability, promote the health of people with disabilities, and develop strategies to prevent secondary conditions among them. To understand the epidemiology of secondary conditions, the authors developed the Massachusetts Survey of Secondary Conditions, a longitudinal study of adults with major disabilities (n = 656) based on a conceptual framework linking disability, mediating factors, and health outcomes. This paper reports baseline data on the number of secondary conditions experienced by survey respondents. Respondents experienced a mean of 5.3 of 17 secondary conditions. More numerous secondary conditions were associated with fair or poor general health and number of days unable to do routine activities. Factors amenable to public health interventions included difficulty with weight and exercise maintenance, tobacco and marijuana use, and experiencing assault. Disability should be a focus in all public health research, policy, and programs.

Public health discipline and practice have prioritized work on poverty and populations at high risk for material deprivation, with less consideration for the full spectrum of financial circumstances relative to well-being. Public health can make a much-needed contribution to this area, which is currently dominated by the financial industry, focused on individual behaviors, and lacking the definitional consensus needed for research and evaluation. A population-level lens can reveal the social determinants and health consequences of real or perceived poor financial circumstances. This article aims to improve conceptual understanding of financial circumstances among public health scholars and professionals. We identified concepts through a critical literature review of peer-reviewed and practice-based resources on financial well-being and financial strain. We developed a glossary of concepts related to financial circumstances and categorized concepts according to their level of influence using an approach informed by socioecological models. We provide a concept map that illustrates the relationships between concepts in the context of their levels of influence. This article will help to advance an agenda on financial well-being promotion in public health research and practice. (Am J Public Health. 2024;114(1):79-89. https://doi.org/10.2105/AJPH.2023.307449).

'Health' is an identifiable theme within the European Union multi-annual research programmes. Public Health Innovation and Research in Europe (PHIRE), led by the European Public Health Association, sought to identify public health research strategies in EU member states. Within PHIRE, national public health associations reviewed structures for health research, held stakeholder workshops and produced reports. This information, supplemented by further web searches, including using assisted translation, was analysed for national research strategies and health research strategies. All countries described general research strategies, outlining organizational and capacity objectives. Thematic fields, including health, are mentioned in some strategies. A health research strategy was identified for 15 EU countries and not for 12. Ministries of health led research strategies for nine countries. Public health research was identified in only three strategies. National research strategies did not refer to the European Union's health research programme. Public health research strategies of European countries need to be developed by ministries of health, working with the research community to achieve the European Research Area.

Public health is a very broad domain. Yet, it can encroach deeply in individual lives. The recent and more chronic examples are manifold: swine flu outbreak, obesity, illicit drug use, BSE, dioxin crisis, and so on. However, Belgian scientific research on public health does not seem to be in the right proportion to the importance of the subject. Since many years, the Belgian Association of Public Health (BAPH) tries to bring together Belgian public health research and researchers. The BAPH is a scientific organisation of research groups and institutions, health workers and policy makers who are active in the field of public health. The aims of the association are to increase the knowledge in different domains of public health, to stimulate public health research and to improve public health practices by bringing together researchers and field workers. To achieve these aims, the association organises thematic scientific meetings, often in collaboration with a university. Every two years the association organises a national symposium. For spreading research results and information, the BAPH can count on the Archives of Public Health, which is the official Journal of the BAPH.

Use of Big Data and Ethical Issues for Populations With Substance Use Disorder

Foundation and Continuation of Public Health ReviewsPublic Health Reviews (PHR) was founded in 1972 in Israel and published for over 30 years, with listing in Pubmed, Medline and Index Medicus and many other on-line data bases until the owner retired. The journal was purchased in 2010 by the EHESP (Ecole des Hautes Etudes en Sante Publique, the French National School of public health) and established with a distinguished international Editorial Board.The mission of PHR since 2010 has been to provide access to European and global public health students, teachers, researchers, practitioners and policy makers of theme topic reviews of high quality to promote learning and discussion of issues in public health from a multi disciplinary point of view. The Editorial Board participated actively in policy development and leadership of many of the theme issues that evolved. PHR strives to bring topical reviews to promote translation of evidence and science into applied public health policy and practice, including the evolution of health systems as part of public health spectrum [1].The theme topics PHR issues during 2010-2013 included:*The New Public Health*Ageing Societies*Public Health Education*Cardiovascular Disease*Ethics in Public Health*Mental Health as a Public Health Issue*Towards a Healthier 2020, and*Substance Use Issues: New Insights.The New Home for Public Health Reviews 2014In 2014, a further reformation of PHR was arranged with affiliation and sponsorship by the Association of Schools of Public Health in the European Region (ASPHER), along with continued sponsorship by EHESP, and an additional sponsor, a Swiss School of public health. An agreement was signed with Biomed Central to publish PHR as an online open access journal. The new arrangements for sponsorship and operation of PHR provided for the continued mission of each issue addressing concepts such as health disparities, social determinants of health, demographic shifts and changing patterns of health needs, education of the public health workforce and policy makers, and healthcare delivery systems. [1].A new Editorial Board (EB) was organized with a strengthened European, international and multi-disciplinary composition to continue the excellent work of the previous EB. A core group of ASPHER representatives working with the editorial team provided important support over the transition period. The previous policies of theme issues will be augmented by accepting individually submitted review papers which fit in with topical issues. PHR will strive to achieve monthly issues, yielding 30 articles annually, with free for online access, including archived previous volumes.The Opening Issue of PHR in 2015The initial issue is a follow up to the 2012 volume on public health ethics. A second issue of PHR on this theme within four years of a previous issue is based on the initiative of ASPHER to prepare curriculum material for formal and informal teaching of public health ethics in the European context as explained in the Lee and Royo-Bordonada editorial [2], and Towards Public Health Ethics [3]. A European oriented curriculum will need relevant case studies for the organized teaching of ethics in public health education programs for undergraduate and graduate degree programs in Europe, in parallel to current Canadian and U.S. initiatives in public health ethics case studies [4].Public health has many enormous achievements to its credit adding many years of life expectancy globally. But public health has also suffered from past ethical failures of staggering proportions in the 20th century through association with eugenics. The most egregious of these was the active and passive participation of medical and public health professionals in interpretations of eugenics which led to mass sterilization and the murder of handicapped people, and participation in the Holocaust perpetrated by Nazi Germany. …

Over the last decade there has been a noticeable increase in attention, on the part of public health scholars and professionals, to the important ethical challenges that arise in the context of public health policy, practice and research. This has arguably been a driver for the development of public health ethics (PHE) as both a specialized field of study in bioethics and a subject for professional education. But how is PHE taught in public health programs and schools? Are current educational approaches sufficient to provide future professionals with the necessary tools to address the diverse ethical challenges they will encounter? In this article, we examine the international public health and bioethics literatures regarding PHE education in public health programs and schools. Specifically, we 1) summarize the results from studies that describe PHE education in the United States, Europe, Canada and in some developing countries, 2) explore current attitudes and educational approaches toward ethics curricula in public health, and 3) identify and discuss reported barriers to PHE education. We conclude with some general recommendations and a research agenda to guide future work on implementing PHE into different public health programs.

BackgroundWithin SPHERE (Strengthening Public Health Research in Europe), a collaborative study funded by the European Commission, we have assessed the support for public health research at ministry level in European countries.MethodsWe surveyed the health and science ministries in 25 EU countries and 3 EEA countries, using a broad definition of public-health research at population level. We made over 600 phone calls and emails to identify respondents and to gain answers. We gained formal replies from 42 out of 56 ministries (73% response) in 25 countries. There were 22 completed questionnaires (from 25 ministries), 6 short answers and 11 contacts declaring that their ministries were not responsible for public health research, while in 14 ministries (both ministries in three countries) no suitable ministry contact could be found.ResultsIn most European countries, ministries of health, or their devolved agencies, were regarded as the leading organizations. Most ministries were able to specify thematic areas for public-health research (from three to thirty), and others ministries referred to policy documents, health plans or public-health plans to define research priorities. Ministries and their agencies led on decisions for financial support of public-health research, with less involvement of other external organisations compared with the process of identifying priorities. However, the actual funds available for public health were not easily identifiable. Most ministries relied on general academic means for dissemination of results of public-health research, while ministries get information on the use of public-health research usually through informal means. Ministries made suggestions for strengthening public-health research through initiatives of their own countries and of the European Union: as well as more resources, improving coordination was most frequently suggested.ConclusionThere is no common approach to support for public-health research across Europe, and significant gaps in organisation and funding. Health ministries and national agencies value exchange between researchers and policy-makers, civil society organizations, and academic and public authorities, and the application of public-health research results. There would be benefits from better processes of priority setting and improved coordination for research, at regional, national and European levels.

We have described and evaluated the impact of a unique fellowship program designed to train postdoctoral, physician fellows in research at the interface of medicine and public health. We developed a rigorous curriculum in public health content and research methods and fostered linkages with research mentors and local public health agencies. Didactic training provided the foundation for fellows' mentored research initiatives, which addressed real-world challenges in advancing the health status of vulnerable urban populations. Two multidisciplinary cohorts (6 per cohort) completed this 2-year degree-granting program and engaged in diverse public health research initiatives on topics such as improving pediatric care outcomes through health literacy interventions, reducing hospital readmission rates among urban poor with multiple comorbidities, increasing cancer screening uptake, and broadening the reach of addiction screening and intervention. The majority of fellows (10/12) published their fellowship work and currently have a career focused in public health-related research or practice (9/12). A fellowship training program can prepare physician investigators for research careers that bridge the divide between medicine and public health.

ObjectiveWe identified mechanisms for addressing and/or managing the influence of corporations on public health policy, research and practice, as well as examples of where these mechanisms have been adopted from...