Public Surveys
Public opinions and behaviour around health data in the GDPR era
With data privacy playing a larger role in both the public conversation and the legal environment with the implementation of the EU General Data Protection Regulation (GDPR) in May 2018, it is critical to understand how popular views on health data are evolving. Research conducted by Decision Resources Group (DRG) suggests that the public, as well as doctors, are open to sharing health data if they have clarity on when and how it is collected and used.
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.
European’s attitudes towards the use of personal data
People value having the power to make decisions about the use of their data. Digital services must be recognisable as being fair, and people want to have the power to decide who gets to use the data collected on them, and for what purposes. These are the views held by people in four European countries, according to a survey commissioned by Sitra, a publicly funded research body in Finland