Ethical Development of the Medical Datasphere

Béranger, Jérôme

doi:10.1016/b978-1-78548-025-6.50002-6

Cited by 3 publications

(3 citation statements)

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“…Greater involvement of third-party aggregation of hospital-sourced data prompts asking whether individuals are patients, consumers, or both under applicable privacy laws and raises new ethical questions about what rights individuals have in the emerging medical datasphere ( Béranger, 2016 ). It is unclear, for example, if contractual relationships between data aggregation companies and hospitals or the aggregation tasks a company performs determine which privacy regimes should apply.…”

Section: Introductionmentioning

confidence: 99%

A Policy and Practice Review of Consumer Protections and Their Application to Hospital-Sourced Data Aggregation and Analytics by Third-Party Companies

Rahimzadeh

2021

Front. Big Data

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The Office of the National Coordinator for Health Information Technology estimates that 96% of all U.S. hospitals use a basic electronic health record, but only 62% are able to exchange health information with outside providers. Barriers to information exchange across EHR systems challenge data aggregation and analysis that hospitals need to evaluate healthcare quality and safety. A growing number of hospital systems are partnering with third-party companies to provide these services. In exchange, companies reserve the rights to sell the aggregated data and analyses produced therefrom, often without the knowledge of patients from whom the data were sourced. Such partnerships fall in a regulatory grey area and raise new ethical questions about whether health, consumer, or health and consumer privacy protections apply. The current opinion probes this question in the context of consumer privacy reform in California. It analyzes protections for health information recently expanded under the California Consumer Privacy Act (“CA Privacy Act”) in 2020 and compares them to protections outlined in the Health Information Portability and Accountability Act (“Federal Privacy Rule”). Four perspectives are considered in this ethical analysis: 1) standards of data deidentification; 2) rights of patients and consumers in relation to their health information; 3) entities covered by the CA Privacy Act; 4) scope and complementarity of federal and state regulations. The opinion concludes that the CCPA is limited in its application when health information is processed by a third-party data aggregation company that is contractually designated as a business associate; when health information is deidentified; and when hospital data are sourced from publicly owned and operated hospitals. Lastly, the opinion offers practical recommendations for facilitating parity between state and federal health data privacy laws and for how a more equitable distribution of informational risks and benefits from the sale of aggregated hospital data could be fostered and presents ways both for-profit and nonprofit hospitals can sustain patient trust when negotiating partnerships with third-party data aggregation companies.

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Section: Introductionmentioning

confidence: 99%

A Policy and Practice Review of Consumer Protections and Their Application to Hospital-Sourced Data Aggregation and Analytics by Third-Party Companies

Rahimzadeh

2021

Front. Big Data

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“…One of the main sources of change in the health system is computerization, digitalization and technical networking that affect both the management, organization and delivery of care and service [1]. In the field of health, the Internet has changed the way people find and receive health information, from passive information comes from physicians advise and the media to active information sought through the Web [2].…”

Section: Introductionmentioning

confidence: 99%

Perception of change and ethical issues in the use of information and communication technologies in the health sector: Results of an online survey

Alaoui¹,

Belouali²

2020

IMRJ

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For several decades, information and communication technologies (ICT) applied to health have undergone a revolutionary development, whether they are e-health, telemedicine or others, these digital changes have marked the global care system. Today, internet is the common source of information to many uses, and it is considered as the wealthiest mine of information for any kind including those of health. This survey, which interviews both Moroccan practitioners and users, is conducted online by distributing two questionnaires. The aim of this study is to discover the perception that Moroccan doctors and users have concerning the change ICTs have been able to bring about without neglecting the ethical and deontological issues involved. The results showed that doctors are already using the web in their daily practice and are open to eHealth practices such as telemedicine. As for users, the practices of eHealth are an asset that should become more widespread. Further research is needed to confirm and further explore the results of this study.

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“… 4 Privacy, health, and security are some topics that are pertinent to discussions regarding the ethics of big data (for various discussions, see Béranger 2016; Collmann and Matei 2016; Galliott and Reed 2016; Lever 2013; Erwin 2015; Stahl 2016). The discussions there revolve around whether and to what extent consent can allow for invasion of privacy, what privacy might mean, how to balance considerations of privacy with those of, say, national security, and more.…”

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confidence: 99%