Dataset Information

A systematic review of barriers to data sharing in public health.

ABSTRACT: 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.

SUBMITTER: van Panhuis WG

PROVIDER: S-EPMC4239377 | biostudies-literature | 2014 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A systematic review of barriers to data sharing in public health.

van Panhuis Willem G WG Paul Proma P Emerson Claudia C Grefenstette John J Wilder Richard R Herbst Abraham J AJ Heymann David D Burke Donald S DS

BMC public health 20141105

<h4>Background</h4>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 ...[more]

PMID: 25377061

Similar Datasets

Project description:BackgroundDigital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable policy-making in the future, it is important to investigate people's preferences for sharing digital health data.ObjectiveThe aim of this study is to elicit the preferences of the public in different Northern European countries (the United Kingdom, Norway, Iceland, and Sweden) for sharing health information in different contexts.MethodsRespondents in this discrete choice experiment completed several choice tasks, in which they were asked if data sharing in the described hypothetical situation was acceptable to them. Latent class logistic regression models were used to determine attribute-level estimates and heterogeneity in preferences. We calculated the relative importance of the attributes and the predicted acceptability for different contexts in which the data were shared from the estimates.ResultsIn the final analysis, we used 37.83% (1967/5199) questionnaires. All attributes influenced the respondents' willingness to share health information (P<.001). The most important attribute was whether the respondents were informed about their data being shared. The possibility of opting out from sharing data was preferred over the opportunity to consent (opt-in). Four classes were identified in the latent class model, and the average probabilities of belonging were 27% for class 1, 32% for class 2, 23% for class 3, and 18% for class 4. The uptake probability varied between 14% and 85%, depending on the least to most preferred combination of levels.ConclusionsRespondents from different countries have different preferences for sharing their health data regarding the value of a review process and the reason for their new use. Offering respondents information about the use of their data and the possibility to opt out is the most preferred governance mechanism.

Project description:BackgroundPrecision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options using public deliberation methods to address this gap.ObjectiveWe aimed to understand the policy preferences of current and former patients with cancer regarding the sharing of health information collected in the contexts of health information exchange and commercial partnerships and to identify the values invoked and perceived risks and benefits of health data sharing considered by the participants when formulating their policy preferences.MethodsWe conducted 2 public deliberations, including predeliberation and postdeliberation surveys, with patients who had a current or former cancer diagnosis (n=61). Following informational presentations, the participants engaged in facilitated small-group deliberations to discuss and rank policy preferences related to health information sharing, such as the use of a patient portal, email or SMS text messaging, signage in health care settings, opting out of commercial data sharing, payment, and preservation of the status quo. The participants ranked their policy preferences individually, as small groups by mutual agreement, and then again individually in the postdeliberation survey.ResultsAfter deliberation, the patient portal was ranked as the most preferred policy choice. The participants ranked no change in status quo as the least preferred policy option by a wide margin. Throughout the study, the participants expressed concerns about transparency and awareness, convenience, and accessibility of information about health data sharing. Concerns about the status quo centered around a lack of transparency, awareness, and control. Specifically, the patients were not aware of how, when, or why their data were being used and wanted more transparency in these regards as well as greater control and autonomy around the use of their health data. The deliberations suggested that patient portals would be a good place to provide additional information about data sharing practices but that over time, notifications should be tailored to patient preferences.ConclusionsOur study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policies should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing.

Project description:INTRODUCTION:The digitalization of medicine has led to a considerable growth of heterogeneous health datasets, which could improve healthcare research if integrated into the clinical life cycle. This process requires, amongst other things, the harmonization of these datasets, which is a prerequisite to improve their quality, re-usability and interoperability. However, there is a wide range of factors that either hinder or favor the harmonized collection, sharing and linkage of health data. OBJECTIVE:This systematic review aims to identify barriers and facilitators to health data harmonization-including data sharing and linkage-by a comparative analysis of studies from Denmark and Switzerland. METHODS:Publications from PubMed, Web of Science, EMBASE and CINAHL involving cross-institutional or cross-border collection, sharing or linkage of health data from Denmark or Switzerland were searched to identify the reported barriers and facilitators to data harmonization. RESULTS:Of the 345 projects included, 240 were single-country and 105 were multinational studies. Regarding national projects, a Swiss study reported on average more barriers and facilitators than a Danish study. Barriers and facilitators of a technical nature were most frequently reported. CONCLUSION:This systematic review gathered evidence from Denmark and Switzerland on barriers and facilitators concerning data harmonization, sharing and linkage. Barriers and facilitators were strictly interrelated with the national context where projects were carried out. Structural changes, such as legislation implemented at the national level, were mirrored in the projects. This underlines the impact of national strategies in the field of health data. Our findings also suggest that more openness and clarity in the reporting of both barriers and facilitators to data harmonization constitute a key element to promote the successful management of new projects using health data and the implementation of proper policies in this field. Our study findings are thus meaningful beyond these two countries.

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.

Dataset Information

A systematic review of barriers to data sharing in public health.

Publications

A systematic review of barriers to data sharing in public health.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets