A global study by Queensland academics has found most people are willing to share their health data for purposes beyond their own care – such as research and quality improvement – but concerns around privacy and transparency continue to challenge public trust.

The systematic review and meta-analysis analysed studies representing the views of more than 140,000 participants across 34 countries.

The new research estimated that 77% of people are willing to share their health data for secondary purposes. Just 13% reported unwillingness, suggesting the remaining 10% are uncertain.

The study was conducted by academics from the Queensland Digital Health Centre and other disciplines within the University of Queensland and published in npj Digital Medicine.1

ALTRUISM AND TRUST

The analysis found most people were willing to share their data with research organisations. There was decreased willingness for government, and particularly for-profit organisations, using the information for commercial purposes.

Patients with cancer were among the most supportive, with more than 90% expressing willingness to share. Key drivers for sharing included altruism, a desire to contribute to better healthcare systems, and trust in health professionals and institutions. On the other hand, fears of reidentification of data, misuse, and exploitation for commercial gain were prominent barriers.

BIG DATA FORCING REASSESSMENT

Study authors said it was the “first known review and meta-analysis for willingness to share health data for secondary purposes”.

“The advent of big data, including AI (artificial intelligence), in healthcare is forcing a rapid assessment of our social licence to repurpose routinely collected healthcare data for secondary purposes.

“This study provides a quantitative and granular view of willingness to share health data.”

The study authors said robust frameworks and governance, aligned with the public’s expectations on use of health data, are essential.

“Although willingness to share health data is generally high, participants’ concerns and conditions for sharing health data have remained consistently elevated across various studies. This indicates a potential disconnect between the public’s knowledge or perception of data sharing principles and their practical application, likely because consent for sharing de-identified data often occurs at a system level.

“Other disconnects between sharing practices and public perceptions are the public’s strong preferences for privacy protections and consent, suggesting that organisations may not be effectively communicating sharing practices to address public apprehension.

“Reassuringly, the proportion of the global population that is willing to share their data for secondary purposes in jurisdictions that are grappling with big data and AI implications is high. Despite highly publicised data breaches… health data for secondary purposes seems to enjoy a protected status, perhaps, in part, driven by the public’s collective goodwill and altruism.

“When health data decision makers are considering sharing, our review shows the public is generally positive, wish to stay informed, and appear to be supportive of existing protections if they are transparent.”

The authors suggested researchers using participants’ health data should design studies with participant preferences at the forefront that are transparent, and consider open public communication of results.

The researchers said the findings underscore the need for public education on data-sharing benefits to build trust, and suggest that future research focusses on developing standardised measures and addressing underrepresented populations.

Expanding studies to low- and middle-income countries, as well as incorporating marginalised perspectives, will support more inclusive data-sharing policies, they said.

Reference

1. Olsen Q, Dyda A, Pole JD, et al. Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis. npj Digit. Med. 2025;8:540. doi: 10.1038/s41746-025-01868-9.