Table 6 Healthcare professionals’ attitude towards society

Patients are citizens

[A] “The patient is all of us”.

Clinical registries benefit society

[Sub-group M’] “Primarily it’s a tool for everybody who has a research question “.

Patients may benefit directly

[Sub-group M”]: “It is always known that patients in a registry, they are usually better followed than other patients. ...because we have to see them every half year [in the cohort].”

Social value is related to meaningful use

[Sub-group M’]: “You want to do that in a meaningful way; I mean we don’t do it in a sense that the DRG system; all the patients get a DRG kind of diagnosis, you know. So, in the end of the year you can bring all these DRG diagnosis together. But they are worth not that much. Obviously, they are worth very much because you are paid according to the DRG so it’s important, but in terms of what they really say, what the patient has, and as outcome, it’s, it’s, you can’t use it.”

Value increases with data sharing

[R] “Sharing data increases the value of the collected clinical registry. A good register communicates, publishes results and invites further research proposals on these data.”

Value needs better physicians’ education

[R] “Physicians should understand the value of what they do when they use epidemiological data. Most physicians feel the moral obligation to keep registries for good quality assurance, but they tend not to share them, not to be transparent. Therefore, comparison is not possible and quality could not be improved. We should have a better national medical education and training, including evidence based medicine, epidemiology and the practice of critical thinking and reflection. Continuous education as well for medical development.”

Value includes financial risk-taking

[A] [translation] “There is always a risk of error in the long term. I have some colleagues who told us that investments have to be made only in research projects that we are sure in advance that they would provide results. They have a serious problem understanding the word research.”

Value is related to trust

[A] [translation] “Here, the socialist party will say: we need a beautiful law that ensures financing, governance, and an interdisciplinary governance which controls everything…etc. and which costs three times more. What the right side says is: no, we provide a legal basis and let the people free, and if they make mistakes, there are enough means to address them …it is this vision that I called the principle of trust.”

Value and governance

[Sub-group M’] “The CRGs should have a medical and social value. The Federal Office of Public Health is not apt to do it. It could financially support CRGs but only professional societies could govern CRG.”

Conflicts in interest

[A] “Transparency issue is a possible deceptive motivation for a registry. CRG may be advocated for patient interests, but in fact would be performed and used for publications and academic careers of the investigators first of all.”