The Secondary Use Act continues to hinder medical research
Background The Act on the Secondary Use of Health and Social Data has raised concerns about the decline of medical research and the future of register-based research. Our study aimed to assess the experiences of clinical researchers regarding the law’s impact by repeating the survey conducted first time in 2021.
Methods Finnish clinical researchers were surveyed to evaluate the law’s effects on research timelines, costs, and collaborations. Additionally, we examined the perceived impact on data protection and researchers' views on necessary amendments to the law.
Results Of the respondents (n=346), 51% reported increased research costs due to the law. 87% found the data permit process more complicated, and 72% noted that it had slowed down. International collaboration was hindered for 53% of respondents, while 63 % reported difficulties in national collaboration. Only 15% felt that data protection had improved.
Conclusions The law and the related regulatory requirements continue to hinder investigator-initiated research in Finland. According to researchers' experiences, the main barriers to research are increased costs, a complex and slow data permit process, and the requirement to handle data in a secure environment.
