SUPPORTING INTEROPERABLE EU PATIENT REGISTRIES- SURVEY OF REGISTRY HOLDERS' NEEDS

Author(s)

Pristas I1, Doupi P2, Meglic M3, Karanikas H4, Zaletel M5, Brkic M1, Plese B1, Zuriaga Llorens O6, López-Briones C7, Pajić V8
1Croatian Institute of Public Health, Zagreb, Croatia, 2National Institute for Health and Welfare (THL), Helsinki, Finland, 3National Institute of Public Health, Slovenia, Ljubljana, Slovenia, 4National & Kapodistrian University of Athens, Athens, Greece, 5Nacionalni Institut za javno zdravje, Ljubljana, Slovenia, 6Conselleria de Sanitat. Generalitat C. Valenciana, Valencia, Spain, 7FISABIO, Valencia, Spain, 8Medical Informatics and Biostatistics Service, Zagreb, Croatia

OBJECTIVES Due to the diversity in EU Member States’ specific needs and legislation, the complexity of the health domain and the variable progress in IT-implementation there is currently limited standardization across registries and other eHealth tools. PARENT Joint Action (www.patientregistries.eu) aims at supporting the development of comparable and interoperable patient registries, thus enabling secondary data usage for public health and research purposes in a cross-border setting. As part of mapping the EU patient registry landscape, we undertook a survey of registry holders with the purpose of gathering information on current practices, as well as future needs and expectations with regard to IT-supported data exchange. METHODS A survey of EU registry holders (n=177) was conducted and data was collected via an online questionnaire. Gathered information defines additionally patient registry metadata and is part of the development process of the Registry of Registries (RoR) – an envisioned go-to source for up-to-date information about patient registry metadata across Europe. RESULTS We found a high degree of interest (82%) for participation in a single IT-enabled platform on the EU level, indicating IT tools, quality control systems and networking opportunities as the most potentially desirable services of such a system. The registries that indicated an interest to link their data to other data sources were more likely to have previously established standardized data exchange procedures and formats (Pearson χ2=6.909, df=1, p= 0.009). There were no statistically significant differences in presence of routine data exchange procedures among patient registries according to Registry type (condition-based, product-based or service-based), Geographical coverage and/or Holding institution type.  CONCLUSIONS Achieving patient registry interoperability requires a complex service-oriented approach taking into account the whole registry context (political, legal, organizational, semantic and technical levels). Our survey findings will serve more advanced in-depth assessments of registry quality dimensions to be performed through the PARENT Framework.

Conference/Value in Health Info

2014-11, ISPOR Europe 2014, Amsterdam, The Netherlands

Value in Health, Vol. 17, No. 7 (November 2014)

Code

PHP249

Topic

Study Approaches

Topic Subcategory

Registries

Disease

Multiple Diseases

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