A brief summary of the information produced by associations clearly shows that the behaviour of the various Member States, compared with the involvement of citizens and patients' organizations can be classified into three types:
- Formalized: public consultations, dissemination of the transposition measures to acquire the opinions and the views of associations etc. as in the case of Austria, Estonia, France and Norway.
- Informal: relationships between the ministry and civic associations/organizations which are based on spontaneous interviews and meetings and most of the time required by the same associations but which do not become a binding force nor a proper intervention. Involvement therefore depends on the willingness of individual associations which decide to "put pressure" to enter the transposition process in the Member States. See the example of Italy.
- Absent or almost absent: are those situations in which the associations, after having forwarded specific requests, have discovered that their institutional partner (Ministers or similar) has dropped the submissions, downplayed the importance of the issue, has not responded or has clearly indicated that the issue is not a priority of the Ministry.
Seven out of twelve associations have begun a more or less formalized form of collaboration with their national institution of reference; this situation gets worse when you consider the number of active and available National Contact Points for citizens: only one has been set up in Latvia, although providing very little information to citizens. In other instances or the associations know little about the issue or have not been involved in the implementation process, or the service still does not offer any services to citizens.
An emblematic example is that the National Contact Point, which should be a top service for citizens, is not involving the associations which could offer both their knowhow and experience.