Surveys 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.
This 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 four-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).
These 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 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.
Jurors 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.