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, conducted a public survey in 2021 to explore patient and public preferences for concretising data-intensive health research. This study aims to inform efforts to design governance frameworks for data-intensive health research, by gaining insight into the preferences of patients and publics for governance policies and measures.

The findings of this study were published in September 2022 by the JMIR Human Factors journal. Findings point out that policies and measures are crucial for governing health data research and building trust. Due regard should be given to patient and public preference for greater control at the collective level of governance. People have concerns about secondary use of data by commercial parties and the risk of data misuse, reasons for which they favor personal control of their data.

Good governance builds on conditions for support and furthers trustworthiness of health data research.  This message is important for policy makers as they are working towards the development of a European Health Data Space. 

Further research is required to understand how governance policies and measures can contribute to the trustworthiness of data-intensive health research.

Click here to read the paper: https://humanfactors.jmir.org/2022/3/e36797