New research from the Queensland Digital Health Centre (QDHeC) at the University of Queensland reveals that three-quarters of people sampled worldwide are willing to share their personal health data, but privacy concerns could hinder breakthroughs in health research and healthcare improvements.
The comprehensive systematic review, which analysed perspectives from more than 141,000 participants across 34 countries, found that 77% of people express willingness to share their health information for reuse. However, this willingness varies dramatically depending on how the data will be used.
Dr Lee Woods, Senior Research Fellow at QDHeC, said that without data sharing, communities could potentially miss out on new treatments, face slower responses to disease outbreaks like COVID-19, and lose access to personalised therapies and safer healthcare.
"Data is currently reused for developing life-saving treatments, conducting disease surveillance to prevent outbreaks, supporting drug approvals, enabling precision medicine, and driving quality improvements that make healthcare safer," she said.
"Despite an overall positive attitude toward data sharing, concerns about privacy, consent, and transparency remain challenges to be addressed."
The research revealed striking variations in peoples’ willingness to share data for reuse based on the intended use. People showed greatest enthusiasm for research purposes, but were far more reluctant to share with for-profit organisations, with only 25.4% expressing willingness for commercial use.
People with cancer demonstrated the highest willingness to share their health data at 91%, suggesting personal experience with a serious health condition may increase openness to contributing data for potential medical advances.
Re-identification of personal data emerged as the primary concern among participants, with 31-83% worried that shared health information might identify them personally despite anonymisation efforts.
Despite these concerns, altruistic motivations proved powerful, with 58% of participants indicating they were motivated by the potential to help others through data sharing.
The researchers identified three important areas of work to improve health data utilisation while maintaining public trust.
“We need enhanced public awareness about data use, more inclusive research across diverse populations beyond high-income countries, and standardised tools to measure data-sharing attitudes," Dr Woods said.
"Better use of data could provide substantial benefits for healthcare systems under increasing strain, but public trust remains the critical determining factor in whether such initiatives can succeed."
The study examined 65 quantitative papers published since January 2020, led by Professor Jason Pole, PhD candidate Quita Olsen, Dr Lee Woods, Dr Amalie Dyda, in consultation with QDHeC consumer representative Lesley McGee and an interdisciplinary research team.
The researchers recommend that healthcare organisations and policymakers focus on transparent communication about data use, robust privacy protections, and clear informed consent processes to address public concerns while harnessing the benefits of health data sharing.
Read the full paper here - Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis | npj Digital Medicine
