Challenges in conducting sexual health and violence research in older adults beyond the GDPR: a Belgian case study

Background
Research on sexual health (SH) and violence (SV) has always been guided by strict ethical and safety guidelines. Since 25th of May 2018, the European General Data Protection Regulation (GDPR) poses additional challenges. In Belgium, GDPR led to an adaptation of sampling procedures through the National Register, making access to personal data only possible via an active opt-in procedure. This implied drastic changes in our protocol studying SV prevalence in older adults.

Methods
From the original procedure of randomly sampling older adults through the Belgian National Register, we were urged to change to a cluster random probability sampling. Eligible participants were to be identified using a random route finding approach with interviewers going door-to door.

Results
We thus far conducted 506 interviews. Preliminary analysis shows a participation rate of 38%. To conduct one interview, interviewers had to call upon 32 houses on average. Interviewers find the door-to-door approach challenging. Nevertheless, we got a lot of appreciation from the participants, making the overall experience rewarding. Compared to an online survey on SV in the general population, disclosure of SV was higher.

Conclusion
Our study shows that doing research on SH and SV in a post-GDPR era is feasible but requires more time and challenging procedures resulting in a more expensive procedure. It is vital for future studies that research institutions, donors, and policy makers convene to investigate how problems related to the GDPR regulation can be avoided, especially regarding research on sensitive topics and hard to reach populations.