THE EU PATIENT REGISTRY LANDSCAPE- SURVEY OF REGISTRY PROFILES THROUGH PARENT JA RESEARCH AND FRAMEWORK

Author(s)

Pristas I1, Doupi P2, Karanikas H3, Brkic M1, Plese B1, Zaletel M4, Magajne M4, Zuriaga Llorens O5, López-Briones C6
1Croatian Institute of Public Health, Zagreb, Croatia, 2National Institute for Health and Welfare (THL), Helsinki, Finland, 3Athens Medical Society, Athens, Greece, 4Nacionalni Institut za javno zdravje, Ljubljana, Slovenia, 5Conselleria de Sanitat. Generalitat C. Valenciana, Valencia, Spain, 6FISABIO, Valencia, Spain

OBJECTIVES:  The Patient Registries Initiative has been established with the goal of providing effective recommendations on cross-border interoperability of patient registries in the EU area. Substantive efforts have been made to gain an in-depth understanding of the actual registry details that pertain to the five levels of interoperability (Political context, legal, organizational, semantic and technical interoperability). This has led to valuable amount of new data on actual patient registries profiles, as well as how the real-world implementation and governance of patient registries in the EU area takes place in their particular contexts. METHODS: An extensive questionnaire aimed at gathering insights into patient registry information has been used by PARENT JA since 2013 and has gathered information from 249 patient registries. Registry holders were queried about registry establishment, governance, funding, data sources, data quality indicators, standards used and other interoperability-related information. RESULTS:  The questionnaire results have provided valuable information on registry metadata and an overview of the patient registry landscape in the EU. The largest proportion of patient registries is condition-based (80%), with the rest corresponding to service-based (18%) and product-based (2%). Further referential research of 1122 patient registries operating in the EU has found similar trends. In the area of registry governance, approximately two thirds (65%) had public authority or public health representatives on their governing boards, with an almost negligible proportion having industry or even health insurance representatives (<2%). CONCLUSIONS:  The differences between surveyed registries are tangible proof of the differences in the ever-shifting EU patient registry landscape. The PARENT Framework has been identified as a useful tool for providing insights into cross-domain patient registry profiles and should assist in the development of recommendations and services for improving registry interoperability, while also supporting public health and individual registry holder’s needs.

Conference/Value in Health Info

2015-11, ISPOR Europe 2015, Milan, Italy

Value in Health, Vol. 18, No. 7 (November 2015)

Code

PHP280

Topic

Study Approaches

Topic Subcategory

Registries

Disease

Multiple Diseases

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