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

Abstract

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.

A Social Media Campaign (#datasaveslives) to Promote the Benefits of Using Health Data for Research Purposes: Mixed Methods Analysis

“…Previous studies have shown how responses to care.data on Twitter attracted critical commentary [31], including from interest communities in politics, health care, and the media [32]. Before the observation period examined in this study, concerns had been raised about access to patient data by commercial companies, especially where these uses were perceived to be primarily motivated by profit rather than public benefit [30,[33][34][35]. This study contrasts with these findings, showing how #datasaveslives was used in the wake of public backlash to care.data to spread mainly positive messages about data use and reuse, and to increase transparency, demonstrate solidarity, and provide supportive networks among health, data, and IT professionals.…”

Trust, security and public interest: Striking the balance

“…A public consultation by Ipsos MORI [ 24 ] on behalf of the UK Medical Research Council regarding the use of personal health information in research found that 70% of participants agreed the advantages of medical research – which the authors say are mainly considered ‘societal’ – outweigh the disadvantages (mainly seen as the disclosure of personal health information). Study participants have been found to consider financial profit an unacceptable motive for the use of administrative data [ 25 – 27 ]. A 2014 study by Marion Oswald investigating attitudes towards sharing personal data with the public sector [ 27 ] found most participants would be comfortable with their data being used to improve public services, but only 23% were comfortable with it being used by the NHS, and 27% by central government, to make profits to fund services.…”

“…Some study participants have also identified public benefits of private companies having access to data in certain circumstances; in such cases, there has been a preference for greater safeguards and controls than might be expected for public bodies [ 18 , 25 ]. Aitken et al [ 18 ] found that, although some organisations are trusted more than others, this does not mean access to data by these groups is automatically supported, and vice versa.…”

“…Participants of research by Tully et al investigating public perceptions of appropriate uses of health data [ 25 ] felt the public benefit of data use by commercial organisations must be made explicit. Participants of Aitken et al ’s focus groups [ 18 ] expressed concern that a lack of openness may be a deliberate effort to withhold information from the public, with the authors finding that transparency plays an important role in levels of trust.…”

Sharing administrative health data with private industry: A report on two citizens' juries

“… 6 , 7 , 8 , 9 , 10 , 11 However, even with protections in place, a number of studies also show that community members remain concerned about data security, the potential for misuse of their data and their lack of control over their own health information. 6 , 7 , 8 , 9 , 10 , 11 , 12 These studies also show that this disquiet is heightened if private sector organizations have access to the data and that the use of such data for financial gain is an additional significant concern. 6 , 7 , 8 …”