Patients' and Publics' Preferences for Data-Intensive Health Research Governance: Survey Study.

Sam H A Muller Ghislaine J M W van Thiel Marilena Vrana Menno Mostert Johannes J M van Delden

Published in: JMIR human factors (2022)

This study revealed that both a positive attitude toward health data sharing and demand for personal decision-making abilities were associated with policies and measures strengthening control at the collective level of governance. We recommend pursuing the development of this type of governance policy. More importantly, further study is required to understand how governance policies and measures can contribute to the trustworthiness of data-intensive health research.

Keyphrases

public health
healthcare
decision making
mental health
end stage renal disease
big data
global health
newly diagnosed
single cell
risk assessment
peritoneal dialysis
climate change
data analysis
human health