Background
Patients generate large amounts of digital data through devices, social media applications, and other online activities. Little is known about patients’ perception of the data they generate online and its relatedness to health, their willingness to share data for research, and their preferences regarding data use.
Methods
Patients at an academic urban emergency department were asked if they would donate any of 19 different types of data to health researchers and were asked about their views on data types’ health relatedness. Factor analysis was used to identify the structure in patients’ perceptions of willingness to share different digital data, and their health relatedness.
Results
Of 595 patients approached 206 agreed to participate, of whom 104 agreed to share at least one types of digital data immediately, and 78% agreed to donate at least one data type after death. EMR, wearable, and Google search histories (80%) had the highest percentage of reported health relatedness. 72% participants wanted to know the results of any analysis of their shared data, and half wanted their healthcare provider to know.
Conclusion
Patients in this study were willing to share a considerable amount of personal digital data with health researchers. They also recognize that digital data from many sources reveal information about their health. This study opens up a discussion around reconsidering US privacy protections for health information to reflect current opinions and to include their relatedness to health.
Electronic supplementary material
The online version of this article (10.1186/s12911-019-0886-9) contains supplementary material, which is available to authorized users.
Objectives. Backyard poultry ownership is increasingly common in U.S. cities and is regulated at the local level. Human contact with live poultry is a wellknown risk for infection with zoonotic pathogens, notably Salmonella, yet the ability of local jurisdictions to reduce the risk of infectious disease transmission from poultry to humans is unstudied. We reviewed urban poultry ordinances in the United States and reported Salmonella outbreaks from backyard poultry to identify regulatory gaps in preventing zoonotic pathogen transmission. Based on this analysis, we propose regulatory guidelines for U.S. cities to reduce infectious disease risk from backyard poultry ownership.Methods. We assessed local ordinances in the 150 most populous U.S. jurisdictions for content related to noncommercial poultry ownership using online resources and communications with government officials. We also performed a literature review using publicly available data sources to identify human infectious disease outbreaks caused by contact with backyard poultry.Results. Of the cities reviewed, 93% (n139) permit poultry in some capacity. Most urban poultry ordinances share common characteristics focused on reducing nuisance to neighbors. Ordinances do not address many pathways of transmission relevant to poultry-to-human transmission of pathogens, such as manure management.Conclusions. To reduce the risk of pathogen exposure from backyard poultry, urban ordinances should incorporate the following seven components: limited flock size, composting of manure in sealed containers, prohibition of slaughter, required veterinary care to sick birds, appropriate disposal of dead birds, annual permits linked to consumer education, and a registry of poultry owners.
Improving our understanding of these issues is an essential first step to protect human participants in future EMA research. We provide a brief set of recommendations that can aid in the design and ethics review of the future EMA protocol with substance using populations.
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