Citizens’ Juries in the UK explore which uses of health data are acceptable to the public
Connected Health Cities (CHC), an initiative in the north of England using health data to improve care, has held two Citizens’ juries to explore public opinion on data use. Citizens’ juries involve about 18 citizens spending three or four days together, learning about an issue from expert witnesses and discussing it in small groups, before writing a joint report containing answers to the ‘purpose’ they have been asked to address. Given enough time, opportunity, support and resources, members of the public can make considered, informed judgements about complex matters. This can give more useful data than might be obtained just from a survey.
CHC held two four-day citizens’ juries in November 2016 in the North of England to find out what informed citizens considered to be appropriate uses of health data in a learning health system and why they made those decisions. A learning health system is a healthcare system in which the analysis of health data is routinely used to produce continual improves in care.
The two juries had different jurors but the same purpose, expert witnesses and facilitators. Jurors considered whether and why eight examples of anonymised patient data were acceptable. Four of the examples were initiatives that were already planned, such as using data to help paramedics get better at spotting the signs of people who have had a stroke. The other four were potential commercial data uses, such as developing intelligent software to aid future diagnosis of sepsis, a life-threatening condition.
These citizens’ juries found that:
All planned and two of the potential examples were considered appropriate by most jurors because they could deliver public benefit.
Jurors had concerns about whether the examples that were intended to improve healthcare efficiency would lead to unequal provision or closure of healthcare services, even though they accepted this could also deliver benefit.
Commercial gain that was in addition to public benefit was acceptable, but prioritising profit was unacceptable, regardless of how well the data were protected. Some jurors becoming more accepting of commercial uses as they understood them better following the discussions and deliberations.
A video showing the citizens’ juries can be found here: https://www.connectedhealthcities.org/chc-hub/public-engagement/citizens-juries-chc/citizens-juries/
Tully MP, Hassan L, Oswald M, Ainsworth J. Commercial Use of Health Data – a Public “Trial” by Citizens’ Jury. Learning Health Systems 2019; e10200: 1-13. https://onlinelibrary.wiley.com/doi/full/10.1002/lrh2.10200