Table 3 Healthcare professionals’ behaviour – Operational rules

Importance of data quality

[Sub-group M’, principal investigator]: “The crucial aspect of a registry is what kind of data do you put into this registry, and how well is this data controlled, and how good is the quality of this data in the end. This is what really counts… It is difficult you know; I’m continuously involved if there are some questions about definitions. Definitions always evolve. How do you, what kind of data point do you collect?”

Trust in quality

[A]: “My special problems with the evaluation registries as we call them, is that the physicians deliver the data to these registries, enough data, good quality data and that you have registries that you can use! That was always a problem and it is a problem: how to make them mandatory or how you can guarantee that the data are full and good. That is always the problem.”

Good management needs human and financial resources

[R]: [translation] “Money is necessary, for infrastructure and people, but public services are always reluctant. …With the National Research Fund, it is discouraging, they don’t want to engage themselves in the long term…a better coordination should exist between institutions and the National Research Fund, with a guarantee at the launch of a project that institutions will take over later.”

Issue of definition of quality

[Sub-group M’]: [translation] “It is difficult to measure quality in medicine. What is it? Is it patient satisfaction? Is it cost-effectiveness? Because when parliamentarians speak about quality, it is completely wrong: for them, it is quality – price ratio; when they think quality, it is profitability, and for me it is not. Quality has nothing to do with money…because if you want true quality, it would be expensive.”

Steering committee to set the rules

[Sub-group M’]: “You need some clear rules how will these data and samples be used, you know, by whom? And we have actually modelled ourselves a bit along the HIV cohort study which has a scientific committee; so, whenever somebody has a research question, he has to go there, has to write the proposal, we review the proposal and we accept the proposal or not.”

Utility is essential

[Sub-group M”]: “If we collect data, we have to organize everything that we can create as much information out of this data as possible. So, I think it is, it’s only serious to collect data if they can be used for something. If they are just collected and if they are not, cannot contribute to improve the system, then it is, I think it is not ethical to collect them.”