Governance and financing of drug-evaluation registries

The Ministry of Health, Welfare and Sport assigned the Dutch Health Authority (ZiN) to coordinate the development and maintenance of drug-evaluation registries. To this end, ZiN commissioned SiRM to map registry bottlenecks and possible solutions focusing on governance and financing.

Given the increasing importance of measuring real-life outcomes of new drug treatments, registries monitoring these results are ever more critical. However, the existing registries are fragmented and often ill-equipped to monitor expensive drugs’ use and (cost) effectiveness. To address this, the Ministry of Health assigned ZiN to coordinate the development and maintenance of expensive-drug registries. In turn, ZiN commissioned SiRM to inventory possible bottlenecks and solutions.

We conducted desk research and undertook approximately 20 interviews with registry users (current and potential) and administrators, concluding that greater coordination is long overdue. Although registries are crucial for the efficient use of expensive drugs, our findings suggest that the current approach to data collection for evaluating pharmaceutical drug use in the Netherlands is too non-committal. Sustainable registries for collecting pharmaceutical drug data require more government intervention.

In a follow-up project, we developed various scenarios for improving registries’ governance and financing in collaboration with ZiN and the Ministry for Health. We achieved this through expert sessions with ZiN and the Ministry to define the basic principles all scenarios must meet and collectively identify the most important choices, critical for determining the scenario axes. ZiN discussed these with the sector before advising the Ministry on the desired scenario.