General Objectives

The overall objective of the PARENT Joint Action is to support the EU Member States in developing comparable and interoperable patient registries in fields of identified importance (e.g. chronic diseases, medical technology) with the aim to rationalize the development and governance of patient registries, thus enabling analyses of secondary data for public health and research purposes in cross-border settings. To do so, we need to improve the ability of patient registries to share data as well as improve the process of feeding data to the registries from their primary sources, such as Electronic Healthcare Records (EHRs).
 
The Joint Action objective is also to support the EU Member States in providing objective, reliable, timely, transparent, comparable and transferable information on the relative efficacy, as well as in the short-term and long-term effectiveness, of health technologies. This information should be effectively exchanged among the relevant national authorities or bodies. This will enable the rationalization of the Health Terminology Assessment (HTA) processes. It will avoid the duplication of assessments and increase availability and quality of previously localized patient registries data.

 

The so called two-fold actions will serve to achieve the general objective in a long term:
 
  • • First, a comprehensive set of recommendations, specific guidelines and tools to support the EU Member States in methodology, development, implementation, governance and improvements of national and local patient registries is being developed, where relationship to and dependence on Electronic Health Records and the secondary usage (cross-border and national level) of patient registry data is to be taken into account.
  • • Second, activity plans, business model proposals and policy proposals to ensure sustainability of cross-border collaboration on usage of patient registry data (especially Registry of Registries and Methodological and Governance Guidelines) and proposal of future activities to support implementation of Cross-border Healthcare Directive are being developed