Building trust in health data: a new WHO tool for the digital age
A new self-assessment tool guiding countries on how to turn trust into tangible action has been published by WHO and the University of Zurich. The publication, Trust-building self-assessment tool for health data policies in the digital age in the WHO European Region, provides background information and relevant literature to support an understanding of trust and how it can be fostered through policy work.
Helping countries integrate trust-building principles into health data policies in the digital age is a key objective of the WHO Global Strategy on Digital Health 2020–2027. The tool offers step-by-step guidance for assessing how trust-building principles are considered and integrated into health data policies during internal policy review processes.
The key role of trust
Trust is fundamental to the success of health data initiatives. It can encourage participation and strengthen public confidence in health systems. However, trust is often viewed as a vague and abstract concept that is difficult to translate into policy and practice.
The COVID-19 pandemic highlighted the importance of access to health data for primary and secondary use. It also exposed how low levels of trust in health systems can hinder such access. Research conducted by the University of Zurich between 2023 and 2024 found that policy professionals widely recognize the importance of trust, particularly when it comes to sensitive health data, but face challenges due to a lack of concrete guidance on fostering this trust. The European Commission has also recognized trust as a key enabler of the European Health Data Space.
“Health data is sensitive, and people have every right to expect that their information will be handled responsibly. When patients and health workers trust the systems that collect, store and use health data, they are more likely to benefit from digital services. But trust can seem like an abstract concept, even though it’s often shaped by concrete policy choices. This self-assessment tool is designed to make trust easier to work towards by helping countries identify practical ways to build it into policies from the start”, said Dr David Novillo Ortiz, Regional Adviser for Data, Artificial Intelligence and Digital Health at WHO/Europe.
The self-assessment tool
The tool is intended for policy professionals involved in the formulation and revision of health data policies. It can be adapted to different governance systems and policy contexts. Ideally, it should be used in a participatory way, bringing together policy professionals and ministry staff to identify areas for improvement and follow up on gaps. It does not produce a score or certification. Instead, the tool is designed to support constructive reflection, discussion and policy refinement.
"The tool was developed with and for health data policy professionals to make trust an explicit part of their work. It encourages them to reflect on when trust matters, who should be involved, which conditions need to be in place, and what the evidence says", said Dr Felix Gille and Federica Zavattaro, co-authors of the self-assessment tool from the University of Zurich.