Background
In the search for safeguarding privacy and protection of individuals, the European Union has developed General Data Protection Regulation (GDPR) which governs processing of personal data of all European citizens since 2018. One unwanted effect of the GDPR is a brake on health research because of limitations imposed on data exchange within and between countries. However, for decades international data sharing has been the driving force of progress in research and health care, and such progress cannot continue without an effective use of data collected on patients and their health conditions.
 
Objectives
In the framework of the collaboration Targeting Childhood Cancer through the Global Initiative for Cancer Registry Development (ChildGICR) we intended to shed light on obstacles to progress in health research due to restrictions on international sharing of health data imposed by the GDPR or its interpretation, as well as on possible solutions.

Methods
We conducted a scoping review of scientific literature published in years 2011-2025 and registered in the Medline database, using the PRISMA methodological framework. The search terms included confidentiality, GDPR, legislation, data protection and sharing, research and dissemination. Additional publications identified through reference chaining were also reviewed. The selected publications were classified by authors’ characteristics, type of publication and journal focus. Specific barriers and suggested solutions described in the publications were abstracted and summarised. This study was supported by St. Jude Children’s Research Hospital and the International Agency for Research on Cancer in the framework of ChildGICR collaboration.

Results
Based on title and abstract research, 432 publications were identified. Among them, 51 were included in the review. Co-authored by 247 authors working in 19 countries, the publications appeared in 30 journals; 40 of them being published after 2018. The publications documented the difficulties in continuing or starting collaborative research studies between or with European countries, or by international organizations. The most often reported barriers were absence of key definitions related to health research, lack of harmonization in interpretation of the GDPR and absence of workforce and infrastructure for its implementation. To improve the situation and boost international data exchange, the authors suggested a revision of the GDPR with consideration of the data needs for health research, standardisation of terms and rules across institutions and countries, developing practical data transfer mechanisms, or investigating potential technical solutions.

Conclusions/Implications
Despite the growing quantities of health data that are being collected, their use in health research is increasingly obstructed in exchange of non-quantifiable benefit to individuals.Along with the justified need to protect personal data, it is essential to share the protected data to continue advancing health research with the aim of improving health in populations. It is in the interest of policymakers in Europe and in all other parts of the world to engage with all stakeholders, including researchers and public, analyse the current barriers and devise mechanisms for effective sharing of protected data for the benefit of current and future patients.