Who benefits and how? Public expectations of public benefits from data-intensive health research

Aitken, Mhairi; Porteous, Carol; Creamer, Emily; Cunningham‐Burley, Sarah

doi:10.1177/2053951718816724

Cited by 26 publications

(35 citation statements)

References 15 publications

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“…As the Nuffield Council on Bioethics notes, the "public interest" includes both supporting responsible use of data and protecting the privacy of individuals [6], and recent public engagements suggest the public does in fact hold quite nuanced views on data sharing [7,8]. These engagements illustrate that the public is not automatically for or against issues such as sharing of data or the involvement of the private sector, but instead focuses on the context, including considerations such as who is asking, for what, to be used for what purpose [9,10].…”

Section: Introductionmentioning

confidence: 99%

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

Teng

Bentley

Burgess

et al. 2019

IJPDS

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IntroductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK). Objectives and methodsThis paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends. ResultsParticipants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use.

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Section: Introductionmentioning

confidence: 99%

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

Teng

Bentley

Burgess

et al. 2019

IJPDS

View full text Add to dashboard Cite

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“…However, three things eventually emerged: providing societal benefits through better public services, delivering improved outcomes for communities, and enabling research. Elsewhere, members of the public acknowledged value in keeping public benefit only loosely defined, beyond the general concept that research should benefit society as widely as possible . Research to improve service efficiency, thus, could be considered as a public benefit.…”

Section: Discussionmentioning

confidence: 99%

Commercial use of health data—A public “trial” by citizens' jury

Tully

Hassan

Oswald

et al. 2019

Learning Health Systems

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IntroductionSurveys suggest a dichotomy in how citizens view research for public benefit and research for commercial gain. Therefore, a research initiative, such as a learning health system, which works for both public and commercial benefit, may be controversial and lower public trust.MethodsThis study aimed to investigate what informed citizens considered to be appropriate uses of health data in a learning health system and why they made those decisions. Two‐paired 4‐day juries were run, with different jurors but the same purpose, expert witnesses, and facilitators. Overall, 694 people applied; 36 jurors were selected to match criteria based on demographics and privacy views. Jurors considered whether and why eight exemplars of anonymised patient data were acceptable. The exemplars were either planned initiatives to improve care pathways (Planned Examples) or possible commercial data uses (Potential Examples).ResultsThese citizens' juries found that all Planned and two of the Potential Examples were considered appropriate by most, but not all, jurors because they could deliver public benefit. In general, positive health outcomes for patients were more acceptable than improved efficiency of services for the NHS, although they recognised that the latter also improved health. Jurors had concerns about whether improving efficiency would lead to inequitable distribution or closure of services, based on their existing understanding from media reports. Commercial gain that accrued secondary to this benefit was acceptable, with some jurors becoming more accepting of commercial uses as they understood them better. Prioritising profit, however, was unacceptable, regardless of any governance arrangements.ConclusionsJurors tended to be more accepting of data sharing to both private and public sectors after the jury process. Many jurors accept commercial gain if public benefit is achieved. Some were suspicious of data sharing for efficiency gains. Juries elicited more informed and nuanced judgement from citizens than surveys.

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“…While the concept of 'public benefit' has been heavily employed to lobby for expanding the reuse of patient data in research (Starkbaum and Felt, 2018), health scholars and charities have argued that the concept itself remains ill-defined (Aitken et al, 2018;Scott et al, 2018;van Dijck and Poell, 2016). 17 Without widely agreed or established delineations of 'public benefits' in the context of health, it is difficult to determine what would be included in any costbenefit analysis -or to otherwise engage in informed debate on legitimate uses of health data.…”

Section: Interrogating Public Willingness To Trade Access To Health Datamentioning

confidence: 99%

Disambiguating the benefits and risks from public health data in the digital economy

Cheung¹

2020

Big Data & Society

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This article focuses on key roles that the ill-defined concept of ‘public benefit’ plays in accessing the public health data held by the UK’s National Health Service. Using the concept of the ‘trade-off fallacy’, this article argues that current data access and governance structures, based on particular construals of public benefit in the context of public health data, largely negate the possibility of effective control by individuals over future uses of personal health data. This generates a health data version of the trade-off fallacy that enables widespread involvement of commercial actors in personal data, despite public concerns over commercial involvement in, and potential exploitation of, public health data. The article suggests that, despite ostensibly robust regulatory and governance structures, this publicly held data is potentially subject to similar logics of accumulation as seen elsewhere in the digital economy, highlighting the inadequacies of current data regulatory frameworks in the digital era.

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Who benefits and how? Public expectations of public benefits from data-intensive health research

Abstract: The digitization of society and academic research endeavours have led to an explosion of interest in the potential uses of population data in research. Alongside this, increasing attention is focussing on the conditions necessary for maintaining a social license for research practices.

Cited by 26 publications

References 15 publications

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

Commercial use of health data—A public “trial” by citizens' jury

Disambiguating the benefits and risks from public health data in the digital economy

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