This article has been reviewed according to Science X's editorial process and policies. Editors have highlighted the following attributes while ensuring the content's credibility:

Children and young people broadly support the use of health data for research that could improve lives, but they want strong safeguards, transparency and greater involvement in decisions about how their information is used, a review led by researchers at the University of Cambridge has found.

The team reviewed the existing evidence, bringing together studies that capture the views of more than 4,700 children and young people and almost 1,500 parents and caregivers on the use of large health datasets—'big data'—in children's health care research.

They found that children and young people, parents and caregivers were broadly supportive of using health data for research where there was a clear potential benefit, including improving health care, advancing scientific knowledge and supporting people with similar experiences. However, support was conditional, with participants wanting research to be carried out ethically, by trustworthy organizations and with appropriate safeguards and transparency around how their data are used.

Large-scale health datasets, drawn from electronic health records, administrative systems, registries and digital technologies, are transforming health care research, generating insights into disease patterns, treatment outcomes and population health trends.

However, there are often concerns about data being routinely reused beyond their original purpose, for example being sold to commercial companies, and about opaque governance structures and the fact that participants are typically far removed from researchers who analyze their information.

Studies of public attitudes to health data use have found broad but conditional support for data sharing, particularly where there is perceived public benefit and trust in the organizations involved.

Source link