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Private collection: high correlation of sample collection and patient admission date in clinical microbiological testing complicates sharing of phylodynamic metadata.

ABSTRACT: Infectious pathogens are known for their rapid evolutionary rates with new mutations arising over days to weeks. The ability to rapidly recover whole genome sequences and analyze the spread and evolution of pathogens using genetic information and pathogen collection dates has lead to interest in real-time tracking of infectious transmission and outbreaks. However, the level of temporal resolution afforded by these analyses may conflict with definitions of what constitutes protected health information (PHI) and privacy requirements for de-identification for publication and public sharing of research data and metadata. In the United States, dates and locations associated with patient care that provide greater resolution than year or the first three digits of the zip code are generally considered patient identifiers. Admission and discharge dates are specifically named as identifiers in Department of Health and Human Services guidance. To understand the degree to which one can impute admission dates from specimen collection dates, we examined sample collection dates and patient admission dates associated with more than 270,000 unique microbiological results from the University of Washington Laboratory Medicine Department between 2010 and 2017. Across all positive microbiological tests, the sample collection date exactly matched the patient admission date in 68.8% of tests. Collection dates and admission dates were identical from emergency department and outpatient testing 86.7% and 96.5% of the time, respectively, with >99% of tests collected within 1 day from the patient admission date. Samples from female patients were significantly more likely to be collected closer to admission date that those from male patients. We show that PHI-associated dates such as admission date can confidently be imputed from deposited collection date. We suggest that publicly depositing microbiological collection dates at greater resolution than the year may not meet routine Safe Harbor-based requirements for patient de-identification. We recommend the use of Expert Determination to determine PHI for a given study and/or direct patient consent if clinical laboratories or phylodynamic practitioners desire to make these data available.

SUBMITTER: Shean RC

PROVIDER: S-EPMC5829646 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

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Private collection: high correlation of sample collection and patient admission date in clinical microbiological testing complicates sharing of phylodynamic metadata.

Shean Ryan C RC Greninger Alexander L AL

Virus evolution 20180101 1

Infectious pathogens are known for their rapid evolutionary rates with new mutations arising over days to weeks. The ability to rapidly recover whole genome sequences and analyze the spread and evolution of pathogens using genetic information and pathogen collection dates has lead to interest in real-time tracking of infectious transmission and outbreaks. However, the level of temporal resolution afforded by these analyses may conflict with definitions of what constitutes protected health inform ...[more]

PMID: 29511571

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Project description:Private well stewardship, including on-going testing and treatment, can ensure private well users are able to maintain source-water quality and prevent exposures to potentially harmful constituents in primary drinking water supplies. Unlike municipal water supplies, private well users are largely responsible for their own testing and treatment and well stewardship is often minimal. The importance of factors influencing regular testing, and treatment behaviors, including knowledge, risk perception, convenience and social norms, can vary by geography and population characteristics. The primary goals of this study were to survey a general statewide population of private well users in Wisconsin in order to quantify testing and treatment patterns and gather data on motivations and barriers to well stewardship. The majority of respondents reported using and drinking well water daily but only about one half of respondents reported testing their wells in the last ten years and of these, only 10% reported testing in the last 12months. Bacteria and nitrates were contaminants most often tested; and, a private laboratory most often conducted testing. The most commonly reported water treatment was a water softener. Living in a particular geographic region and income were the most significant predictors of water testing and treatment. Iron and hardness, which influence water aesthetics but not always safety, were the most commonly reported water quality problems. Health concerns or perceived lack thereof were, respectively, motivators and barriers to testing and treatment. Limited knowledge of testing and treatment options were also identified as barriers. Results confirm previous findings that well stewardship practices are minimal and often context specific. Understanding the target population's perceptions of risk and knowledge are important elements to consider in identifying vulnerable populations and developing education and policy efforts to improve well stewardship.

Project description:BackgroundThe use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices.ObjectiveThis study aims to explore public attitudes in Australia toward sharing government health data with the private sector.MethodsA web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019.ResultsThe survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants' views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people's health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government's capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population.ConclusionsThis nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

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Private collection: high correlation of sample collection and patient admission date in clinical microbiological testing complicates sharing of phylodynamic metadata.

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Private collection: high correlation of sample collection and patient admission date in clinical microbiological testing complicates sharing of phylodynamic metadata.

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