Health Data and Privacy in the Digital Era

Gostin, Lawrence O.; Halabi, Sam; Wilson, Kumanan

doi:10.1001/jama.2018.8374

Cited by 69 publications

(58 citation statements)

References 3 publications

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“…This emphasises an underlying concern about the security and privacy of their information. This mirrors a general finding from literature of a poor understanding on how consumers' data is managed, mostly unregulated and offers no protection for consumers for their digital health data [40,41].…”

Section: Discussionsupporting

confidence: 76%

Consumer preference to utilise a mobile health app: A stated preference experiment

2020

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BackgroundOne prominent barrier faced by healthcare consumers when accessing health services is a common requirement to complete repetitive, inefficient paper-based documentation at multiple registration sites. Digital innovation has a potential role to reduce the burden in this area, through the collection and sharing of data between healthcare providers. While there is growing evidence for digital innovations to potentially improve the effectiveness and efficiency of health systems, there is less information on the willingness of healthcare consumers to embrace and utilise technology to provide data. AimThe study aims to improve understanding of consumers' preference for utilising a digital health administration mobile app. OPEN ACCESSCitation: Lim D, Norman R, Robinson S (2020) Consumer preference to utilise a mobile health app: A stated preference experiment. PLoS ONE 15(2): e0229546. https://doi.org/10.

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Section: Discussionsupporting

confidence: 76%

Consumer preference to utilise a mobile health app: A stated preference experiment

2020

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“…Patients are very concerned about privacy (Torous et al 2018), and many are not comfortable providing personal data to clinicians via mobile apps (Dragovic et al 2018). In the US, most apps fall outside of HIPAA protections, which only apply to traditional healthcare relationships and environments including healthcare providers, insurers and their business associates (Cohen and Mello 2018;Gostin et al 2018). HIPAA does not cover patient-generated data from apps, wearables or the Internet, which is collected by firms and services that receive, store, combine, analyze and sell the data (Cohen and Mello 2018;Glenn and Monteith 2014b;Gostin et al 2018).…”

Section: Privacy Protectionmentioning

confidence: 99%

“…In the US, most apps fall outside of HIPAA protections, which only apply to traditional healthcare relationships and environments including healthcare providers, insurers and their business associates (Cohen and Mello 2018;Gostin et al 2018). HIPAA does not cover patient-generated data from apps, wearables or the Internet, which is collected by firms and services that receive, store, combine, analyze and sell the data (Cohen and Mello 2018;Glenn and Monteith 2014b;Gostin et al 2018). HIPAA also does not cover the diverse range of non-medical digital data that is routinely included in medically related algorithms (Glenn and Monteith 2014b).…”

Section: Privacy Protectionmentioning

confidence: 99%

Smartphones in mental health: a critical review of background issues, current status and future concerns

Bauer

Glenn²,

Geddes

et al. 2020

Int J Bipolar Disord

121

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There has been increasing interest in the use of smartphone applications (apps) and other consumer technology in mental health care for a number of years. However, the vision of data from apps seamlessly returned to, and integrated in, the electronic medical record (EMR) to assist both psychiatrists and patients has not been widely achieved, due in part to complex issues involved in the use of smartphone and other consumer technology in psychiatry. These issues include consumer technology usage, clinical utility, commercialization, and evolving consumer technology. Technological, legal and commercial issues, as well as medical issues, will determine the role of consumer technology in psychiatry. Recommendations for a more productive direction for the use of consumer technology in psychiatry are provided.

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“…For instance, in the European Union General Data Protection Regulation (GDPR) (Art 5(1)(b), Art 89), data-driven health research is given a special derogation and, if researchers demonstrate that a study is "in the public interest" a REC may grant the study a waiver of informed consent [17,18]. Similar standards are present in the United States Common Rule (45 CFR §46.116, 45 CFR §164.512) and in the Health Insurance Portability and Accountability Act (HIPAA) [19], both regulations grant several derogation for data-driven research involving public benefit, posing minimal risk and allow access to identifiable health information [20,21].…”

Section: Main Textmentioning

confidence: 99%

Data Access Committees

Cheah

Piasecki

2020

BMC Med Ethics

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Background: Sharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant confidentiality. One way to promote the benefits of sharing while ameliorating its potential harms is through the adoption of a managed access approach where data requests are channeled through a Data Access Committee (DAC), rather than making data openly available without restrictions. A DAC, whether a formal or informal group of individuals, has the responsibility of reviewing and assessing data access requests. Many individual groups, consortiums, institutional and independent DACs have been established but there is currently no widely accepted framework for their organization and function. Main text: We propose that DACs, should have the role of both promotion of data sharing and protection of data subjects, their communities, data producers, their institutions and the scientific enterprise. We suggest that data access should be granted by DACs as long as the data reuse has potential social value and provided there is low risk of foreseeable harms. To promote data sharing and to motivate data producers, DACs should encourage secondary uses that are consistent with the interests of data producers and their own institutions. Given the suggested roles of DACs, there should be transparent, simple and clear application procedures for data access. The approach to review of applications should be proportionate to the potential risks involved. DACs should be established within institutional and legal frameworks with clear lines of accountability, terms of reference and membership. We suggest that DACs should not be modelled after research ethics committees (RECs) because their functions and goals of review are different from those of RECs. DAC reviews should be guided by the principles of public health ethics instead of research ethics. Conclusions: In this paper we have suggested a framework under which DACs should operate, how they should be organised, and how to constitute them.

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Health Data and Privacy in the Digital Era

Cited by 69 publications

References 3 publications

Consumer preference to utilise a mobile health app: A stated preference experiment

Consumer preference to utilise a mobile health app: A stated preference experiment

Smartphones in mental health: a critical review of background issues, current status and future concerns

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