Following a narrative review of empirical evidence on patients’ and public attitudes towards the use of health data for research purposes, BigData@Heart researchers at the University Medical Center Utrecht in collaboration with the European Heart Network, launched in February 2021, a survey to explore patient and public preferences for concretising data-intensive health research governance. The public survey, available in 11 languages, was open for input until May 2021 and received a total of 1280 responses from 8 European countries. Overall, findings point out that:
- greater attention is needed to patient and public preferences and their expectations from public policies on data governance and data governance models;
- policies for strengthening personal control by patients as well as checks and safeguards at the governance level are needed.
The research team is now finalising a paper to be published in 2022.