Cross Sector Data Sharing: Necessity, Challenge, and Hope

Schmit, Cason; Kelly, Kathleen; Bernstein, Jennifer

doi:10.1177/1073110519857325

Cited by 22 publications

(29 citation statements)

References 3 publications

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Section: Stakeholders and Regulationsmentioning

confidence: 99%

“…There exist justifiable reasons for protecting health data, but one can also make a strong ethical argument for using and sharing health data for the promotion of public health [10]. Public health agencies at the local and state level need timely local data in order to identify potential problems [10]. Schmit et al go on to note that laws and regulations pose a barrier to data sharing due to the patchwork that is the United States data handling structure which protects data differently depending on the type of data, who owns it, why it was collected, and its intended use [10].…”

Section: Stakeholders and Regulationsmentioning

confidence: 99%

“…Public health agencies at the local and state level need timely local data in order to identify potential problems [10]. Schmit et al go on to note that laws and regulations pose a barrier to data sharing due to the patchwork that is the United States data handling structure which protects data differently depending on the type of data, who owns it, why it was collected, and its intended use [10]. They also note that the law typically lacks specific authorizations to use data to improve public health [10].…”

Section: Stakeholders and Regulationsmentioning

confidence: 99%

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Enhancing Healthcare Information Sharing with Blockchain Technology

Yates

2020

OSJ

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Blockchain, the foundation of many cryptocurrencies, also can be useful for many other industries such as healthcare. Blockchain can enforce immutability and non-repudiation for information stored on it. Although some say the technology is not yet mature enough, others are putting blockchain to the test with programs and pilots. Examining these efforts and dissecting the detail allows us to look at blockchain’s qualities and pitfalls to allow data sharing efforts with medical records.It is widely agreed that sharing medical data outside of the silos where it is captured or created will benefit the individual’s care and outcomes. Regulation and personal humility often stand in the way of this sharing. Blockchain is offering new and novel ways to share data properly and securely with only the providers or researchers who are supposed to receive it. Blockchain is also allowing the patient to take control of their health data and in some cases, even profit from it. This is the concept behind a proposal by the author to allow a patient to share all or part of their data for research and to be justly compensated for that sharing.

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Section: Stakeholders and Regulationsmentioning

confidence: 99%

Section: Stakeholders and Regulationsmentioning

confidence: 99%

Section: Stakeholders and Regulationsmentioning

confidence: 99%

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Enhancing Healthcare Information Sharing with Blockchain Technology

Yates

2020

OSJ

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“…Data protection laws have 5 fundamental elements: (1) a definition of protected data, (2) definition of a regulated person or entity, (3) data use or disclosure restrictions, (4) data use or disclosure exceptions, and (5) penalties for violating the law. It is common for data protection laws to vary wildly in these 5 elements [2][3][4][5][6]. Consequently, it can be exceptionally difficult to understand which law (or laws) apply to a data project and whether a proposed data use is permitted.…”

Section: Introductionmentioning

confidence: 99%

“…This inconsistency encourages highly conservative measures to strip data of potential identifiers, which can severely limit data utility [6]. This reality poses a substantial barrier to cross-sectoral and cross-jurisdictional data uses relevant to health outcomes, including exploration of social determinants of health, retrospective database research studies, informatics research on decision support systems, digital ethology, and big data analytics in health (eg, precision public health) [2,7]. These barriers challenge efforts to rapidly leverage data in public health emergencies (eg, COVID- 19).…”

Section: Introductionmentioning

confidence: 99%

US Privacy Laws Go Against Public Preferences and Impede Public Health and Research: Survey Study

Schmit¹,

Giannouchos²,

Ramezani³

et al. 2021

J Med Internet Res

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Background Reaping the benefits from massive volumes of data collected in all sectors to improve population health, inform personalized medicine, and transform biomedical research requires the delicate balance between the benefits and risks of using individual-level data. There is a patchwork of US data protection laws that vary depending on the type of data, who is using it, and their intended purpose. Differences in these laws challenge big data projects using data from different sources. The decisions to permit or restrict data uses are determined by elected officials; therefore, constituent input is critical to finding the right balance between individual privacy and public benefits. Objective This study explores the US public’s preferences for using identifiable data for different purposes without their consent. Methods We measured data use preferences of a nationally representative sample of 504 US adults by conducting a web-based survey in February 2020. The survey used a choice-based conjoint analysis. We selected choice-based conjoint attributes and levels based on 5 US data protection laws (Health Insurance Portability and Accountability Act, Family Educational Rights and Privacy Act, Privacy Act of 1974, Federal Trade Commission Act, and the Common Rule). There were 72 different combinations of attribute levels, representing different data use scenarios. Participants were given 12 pairs of data use scenarios and were asked to choose the scenario they were the most comfortable with. We then simulated the population preferences by using the hierarchical Bayes regression model using the ChoiceModelR package in R. Results Participants strongly preferred data reuse for public health and research than for profit-driven, marketing, or crime-detection activities. Participants also strongly preferred data use by universities or nonprofit organizations over data use by businesses and governments. Participants were fairly indifferent about the different types of data used (health, education, government, or economic data). Conclusions Our results show a notable incongruence between public preferences and current US data protection laws. Our findings appear to show that the US public favors data uses promoting social benefits over those promoting individual or organizational interests. This study provides strong support for continued efforts to provide safe access to useful data sets for research and public health. Policy makers should consider more robust public health and research data use exceptions to align laws with public preferences. In addition, policy makers who revise laws to enable data use for research and public health should consider more comprehensive protection mechanisms, including transparent use of data and accountability.

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