A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good

Skovgaard, Lea; Wadmann, Sarah; Hoeyer, Klaus

doi:10.1016/j.healthpol.2019.03.012

Cited by 54 publications

(48 citation statements)

References 41 publications

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“…First, people in the European Union generally endorse the reuse of health data for the common good, although they are concerned about the exploitation of that data through commercialization (Skovgaard, Wadmann, & Hoeyer, 2019). Second, it is well known that people's actual privacy-related behaviors seem to stand in contrast to their attitudes.…”

mentioning

confidence: 99%

Public acceptance of Privacy-Encroaching Policies to Address the COVID-19 Pandemic in the United Kingdom

Lewandowsky¹,

Dennis²,

Perfors³

et al. 2020

Preprint

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The nature of the COVID-19 pandemic may require governments to use privacy-encroaching technologies to help contain its spread. One technology involves co-location tracking through mobile Wi-Fi, GPS, and Bluetooth to permit health agencies to monitor people's contact with each other, thereby triggering targeted social-distancing when a person turns out to be infected. The effectiveness of tracking relies on the willingness of the population to support such privacy encroaching measures. We report the results of two large surveys in the United Kingdom, conducted during the peak of the pandemic, that probe people's attitudes towards various tracking technologies. The results show that by and large there is widespread acceptance for co-location tracking. Acceptance increases when the measures are explicitly time-limited and come with opt-out clauses or other assurances of privacy. Another possible future technology to control the pandemic involves "immunity passports", which could be issued to people who carry antibodies for the COVID-19 virus, potentially implying that they are immune and therefore unable to spread the virus to other people. Immunity passports have been considered as a potential future step to manage the pandemic. We probe people's attitudes towards immunity passports and find considerable support overall, although around 20% of the public strongly oppose passports.

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mentioning

confidence: 99%

Public acceptance of Privacy-Encroaching Policies to Address the COVID-19 Pandemic in the United Kingdom

Lewandowsky¹,

Dennis²,

Perfors³

et al. 2020

Preprint

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“…Collective autonomy is an evolution of previous waves of data governance, which prioritizes individual autonomy (Evans, 2017). This reflects the evidence available on public attitudes for the use of health data beyond care; there is support for its use to further the common good (Skovgaard et al, 2019). Evans (2017, p. 1) suggests, we may be seeing "a popular uprising of regular people seeking a meaningful voice in establishing citizen-led ethical and privacy standards to advance big-data science while addressing the concerns people feel about the privacy of their health data."…”

Section: Shift From Institutional To Individual To Collective and Pubmentioning

confidence: 97%

Emerging health data platforms: From individual control to collective data governance

et al. 2020

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Health data have enormous potential to transform healthcare, health service design, research, and individual health management. However, health data collected by institutions tend to remain siloed within those institutions limiting access by other services, individuals or researchers. Further, health data generated outside health services (e.g., from wearable devices) may not be easily accessible or useable by individuals or connected to other parts of the health system. There are ongoing tensions between data protection and the use of data for the public good (e.g., research). Concurrently, there are a number of data platforms that provide ways to disrupt these traditional health data siloes, giving greater control to individuals and communities. Through four case studies, this paper explores platforms providing new ways for health data to be used for personal data sharing, self-health management, research, and clinical care. The case-studies include data platforms: PatientsLikeMe, Open Humans, Health Record Banks, and unforgettable.me. These are explored with regard to what they mean for data access, data control, and data governance. The case studies provide insight into a shift from institutional to individual data stewardship. Looking at emerging data governance models, such as data trusts and data commons, points to collective control over health data as an emerging approach to issues of data control. These shifts pose challenges as to how “traditional” health services make use of data collected on these platforms. Further, it raises broader policy questions regarding how to decide what public good data should be put towards.

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“…In the case of qualitative secondary research, it seems that there is a lack of practical guidance, and it is vital in this type of research to explicitly outline how informed consent is sought to avoid harm 60 . In Europe, seven different types of informed consent were found in the literature: explicit consent, dynamic consent, individual consent, meta consent, consent for contact, consent agreement with GP (general practitioner) and opt out 61 . Moreover, re-contacting participants in a qualitative study could cause psychological, social or other harm 19 .…”

Section: Informed Consentmentioning

confidence: 99%

Reusing Data Technical and Ethical Challenges

Boté¹,

Graells²

2019

DESIDOC Jl. Lib. Info. Technol.

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Research centres, universities and public organisations create datasets that can be reused in research. Reusing data makes it possible to reproduce studies, generate new research questions and new knowledge, but it also gives rise to technical and ethical challenges. Part of these issues are repositories interoperability to accomplish FAIR principles or issues related to data privacy or anonymity. At the same time, funding institutions require that data management plans be submitted for grants, and research tends to be increasingly interdisciplinary. Interdisciplinarity may entail barriers for researchers to reuse data, such as a lack of skills to manipulate data, given that each discipline generates different types of data in different technical formats, often non-standardized. Additionally, the use of standards to validate data reuse and better metadata to find appropriate datasets seem necessary. This paper offers a review of the literature that addresses data reuse in terms of technical, ethical-related issues.

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A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good

Cited by 54 publications

References 41 publications

Public acceptance of Privacy-Encroaching Policies to Address the COVID-19 Pandemic in the United Kingdom

Public acceptance of Privacy-Encroaching Policies to Address the COVID-19 Pandemic in the United Kingdom

Emerging health data platforms: From individual control to collective data governance

Reusing Data Technical and Ethical Challenges

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