Key issues

Looking for health data? Did you know that patient registries contain large amounts of it?
 
Let us help you find the right patient registries. We are setting up a Registry of Patient registries to support you in identifying and contacting suitable registries based on the structure of data they hold and their availability.
 
Why is semantics important in patient registries?
 
Semantics is key to effectively exchange data and information between systems. Most data in patient registries come from the actual care process. The primary source of this data is thus the tool used in the process of care – namely the Electronic Health Record. If we want to have quality data in patient registries, we need to make sure the data from various EHR systems can be imported into patient registries – in a meaningful way. We also need to ensure that data from different patient registries can be meaningfully connected for secondary purposes. The PARENT Framework will provide registry holders with IT tools, advice and best practices to support design and implementation of interoperable registry data models.
 
Are there any legal issues when exchanging data from patient registries?
 
Yes, there are many issues and limitations both at EU and national (sometimes also regional, local) level. We are expecting a change brought about by the introduction of the future Regulation on personal data privacy. As a patient registry holder you need to be aware both of current and future limitations and issues and that is why we are here. PARENT will produce guidelines, recommendations and best practice examples for secondary use of patient registry data in a cross-organizational and cross-border setting.
 
A sustainable business case for patient registries interoperability
 
PARENT is identifying and developing guidelines, recommendations and best practices in the field of interoperable patient registries and their use for secondary purposes (public health, research). We are also developing a toolkit to go with them, to help you reduce the cost of setting up and managing an interoperable patient registry, while you can benefit from:
 

- The ability to exchange and share data with other registries, supporting research and policy advances
- Becoming more competitive when acquiring research funding
- Becoming more visible to stakeholders seeking health data and thus creating an additional revenue stream.
 

Are our health indicators good enough?
 
The indicators are only as good as the data they are calculated from. PARENT aims to increase the transparency of indicator calculation and indirectly improve the quality of underlying data used for indicator calculation. This way we are trying to contribute towards improving the quality of indicators. The PARENT Registry of Registries will enable you to look for sources of indicator data.