Strengthening Global Public Health Surveillance through Data and Benefit Sharing
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ABSTRACT:
SUBMITTER: Edelstein M
PROVIDER: S-EPMC6038731 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:There are widely divergent views as to what constitutes "public health" and "public health research". But regardless of these views, readers of this journal would likely agree that public health matters; we assert that so does the educational programming that prepares its workforce. Our voiced perspectives as authors are influenced by our respective training, occupations, and academic locales, and we believe that undergraduate public and population health education (UGPPHE) across many disciplines is crucial to strengthening public health in Canada. Existing literature and discourse related to UGPPHE in Canada tends to be concentrated around its ancillary positioning within clinical health disciplines such as medicine, nursing, and dentistry, rather than on the evolution of undergraduate degree programs. While UGPPHE programming has the important function of preparing undergraduates to enter into practice as public health professionals, it has added virtue in its capacity to improve public health literacy and produce a more robust body of informed and engaged citizens. The intent of this commentary is to draw increased attention towards the other disciplines less well known for bringing awareness to UGPPHE in Canada and to commence what will hopefully be a cascade of dialogue from stakeholders across the nation.
| S-EPMC6964392 | biostudies-literature
Project description:Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one's DNA and health data for research is relatively low, and trust in the process of data's being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our "Your DNA, Your Say" study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.
| S-EPMC7536612 | biostudies-literature
Project description:In recent years, researchers have begun to explore the use of Distributed Ledger Technologies (DLT), also known as blockchain, in health data sharing contexts. However, there is a significant lack of research that examines public attitudes towards the use of this technology. In this paper, we begin to address this issue and present results from a series of focus groups which explored public views and concerns about engaging with new models of personal health data sharing in the UK. We found that participants were broadly in favour of a shift towards new decentralised models of data sharing. Retaining 'proof' of health information stored about patients and the capacity to provide permanent audit trails, enabled by immutable and transparent properties of DLT, were regarded as particularly valuable for our participants and prospective data custodians. Participants also identified other potential benefits such as supporting people to become more health data literate and enabling patients to make informed decisions about how their data was shared and with whom. However, participants also voiced concerns about the potential to further exacerbate existing health and digital inequalities. Participants were also apprehensive about the removal of intermediaries in the design of personal health informatics systems.
| S-EPMC9980819 | biostudies-literature
Project description:Prospects have never seemed better for a truly global approach to science to improve human health, with leaders of national initiatives laying out their vision of a worldwide network of related projects. An extensive literature addresses obstacles to global genomic data sharing, yet a series of public polls suggests that the scientific community may be overlooking a significant barrier: potential public resistance to data sharing across national borders. In several large United States surveys, university researchers in other countries were deemed the least acceptable group of data users, and a just-completed US survey found a marked increase in privacy and security concerns related to data access by non-US researchers. Furthermore, diminished support for sharing beyond national borders is not unique to the US, although the limited data from outside the US suggest variation across countries as well as demographic groups. Possible sources of resistance include apprehension about privacy and security protections. Strategies for building public support include making the affirmative case for global data sharing, addressing privacy, security, and other legitimate concerns, and investigating public concerns in greater depth.
| S-EPMC5091881 | biostudies-literature
Project description:Genomic surveillance has shaped our understanding of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) variants. We performed a global landscape analysis on SARS-CoV-2 genomic surveillance and genomic data using a collection of country-specific data. Here, we characterize increasing circulation of the Alpha variant in early 2021, subsequently replaced by the Delta variant around May 2021. SARS-CoV-2 genomic surveillance and sequencing availability varied markedly across countries, with 45 countries performing a high level of routine genomic surveillance and 96 countries with a high availability of SARS-CoV-2 sequencing. We also observed a marked heterogeneity of sequencing percentage, sequencing technologies, turnaround time and completeness of released metadata across regions and income groups. A total of 37% of countries with explicit reporting on variants shared less than half of their sequences of variants of concern (VOCs) in public repositories. Our findings indicate an urgent need to increase timely and full sharing of sequences, the standardization of metadata files and support for countries with limited sequencing and bioinformatics capacity.
| S-EPMC9005350 | biostudies-literature
Project description:Through the Public Health Research Data Forum, global health research funders are working together to increase the availability of public health and epidemiology research data in ways that are equitable, ethical, and efficient. The Wellcome Trust funded the research reported in this special edition as a first step toward building an evidence base on the perspectives of research stakeholders in low- and middle-income countries on the benefits and challenges of sharing health research data. We hope this work will make a key contribution to discussions aimed at creating policy frameworks for data access at local, national, and regional levels that are sensitive to different contexts and ensure the benefits to research and health are realized in an equitable manner.
| S-EPMC4547198 | biostudies-other
Project description:This commentary provides a response to the call for papers that explore why public health matters today. We present our thoughts and experiences as members of the inaugural (2017) cohort of Canadian Institutes of Health Research (CIHR) Health System Impact Fellows, focused on population and public health projects within our respective health organizations. One year in, we understand our fellowships as uniquely integrating population and public health attributes toward enhancing health system learning and impact. Despite references to the weakening of public health in the call, we are encouraged by our fellowship experiences that promote a focus on prevention and upstream factors that impact health. We are hopeful that a continued focus on population and public health in future fellowship cohorts will in time demonstrate positive health system change for Canadians.
| S-EPMC6964419 | biostudies-literature
Project description:While researchers and agencies from low- and middle-income countries often contribute significantly to public health surveillance data, which is crucial for effective pandemic prevention, preparedness, and response activities, they often do not receive adequate compensation for their contributions. Incentivizing data sharing is important for informing public health responses to pathogens with pandemic potential. However, existing data-sharing legal frameworks have limitations. In this context, we looked beyond "business as usual" candidates to explore the applicability of a benefit-sharing model developed and implemented by the Fédération Internationale de Football Association (International Federation of Association Football; FIFA) in international association football. This model rewards grassroots contributions and redistributes benefits, promoting a fair balance of interests across diverse economic contexts. We discuss adapting FIFA's mechanisms, including training compensation and solidarity payments, to create a novel benefit-sharing framework in global health. Given the complexity of global health, we note ways in which components of the FIFA model would need to be adapted for global health. Challenges such as integrating into existing legal frameworks, ensuring broad international buy-in, and accommodating different pandemic periods are examined. While adapting the FIFA model presents challenges, it offers a promising approach to achieving more equitable data sharing and benefit distribution in global health.
| S-EPMC11267394 | biostudies-literature
Project description:ObjectivePublic health organizations increasingly face the need to be able to share data among themselves and ultimately with other providers. We examined what factors contribute to public health organizations' data exchange capabilities.Data sourcesNational Association of County and City Health Officials' 2008 National Profile of Local Health Departments survey was linked to the Association of State and Territorial Health Official's 2007 Profile of State Public Health Survey.Study designWe conducted a cross-sectional analysis of organizational factors associated with gaps in data sharing between state health agencies (SHAs) and local health departments (LHDs) in the areas of childhood immunizations, vital records, and reportable conditions.Data collectionBased on reported information system (IS) capabilities, we created a binary variable that measured whether bidirectional data sharing was structurally possible between an LHD and its respective SHA.Principal findingsThe proportion of LHDs experiencing a data sharing gap was 34.0 percent for immunizations, 69.8 percent for vital records, and 81.8 percent for reportable conditions. Increased SHA technological capacity and size reduced the odds of gaps.ConclusionsImproving the IS capabilities of public health agencies may be the key to their remaining relevant in the currently evolving health care system.
| S-EPMC3925408 | biostudies-literature
Project description:BACKGROUND:In the current information age, the use of data has become essential for decision making in public health at the local, national, and global level. Despite a global commitment to the use and sharing of public health data, this can be challenging in reality. No systematic framework or global operational guidelines have been created for data sharing in public health. Barriers at different levels have limited data sharing but have only been anecdotally discussed or in the context of specific case studies. Incomplete systematic evidence on the scope and variety of these barriers has limited opportunities to maximize the value and use of public health data for science and policy. METHODS:We conducted a systematic literature review of potential barriers to public health data sharing. Documents that described barriers to sharing of routinely collected public health data were eligible for inclusion and reviewed independently by a team of experts. We grouped identified barriers in a taxonomy for a focused international dialogue on solutions. RESULTS:Twenty potential barriers were identified and classified in six categories: technical, motivational, economic, political, legal and ethical. The first three categories are deeply rooted in well-known challenges of health information systems for which structural solutions have yet to be found; the last three have solutions that lie in an international dialogue aimed at generating consensus on policies and instruments for data sharing. CONCLUSIONS:The simultaneous effect of multiple interacting barriers ranging from technical to intangible issues has greatly complicated advances in public health data sharing. A systematic framework of barriers to data sharing in public health will be essential to accelerate the use of valuable information for the global good.
| S-EPMC4239377 | biostudies-literature