|Health and Care Data: Approaches to data linkage for evidence-informed policy
|Katherine Polin ; Dimitra Panteli ; Erin Webb
|Type de document :
|Bruxelles [BEL] : European Observatory on Health Systems and Policies, 2023/07
|Health systems in transition , num. Vol. 25 No. 2
|248p. / Tabl., ann.
|Donnée de santé ; Recueil données ; Recherche ; Accès information ; Confidentialité ; Covid 19 ; Epidémie ; Australie ; Autriche ; Canada ; Danemark ; Finlande ; France ; Pays Bas ; Nouvelle Zélande ; Corée du Sud ; Slovénie ; Suède ; Royaume Uni ; Etats Unis
Health services research increasingly relies on data linkage, including to datasets outside the health sector:
Evidence-based health policy requires good health services research, which in turn requires access to comprehensive high-quality data. With the digital transformation of healthcare, ever-more dynamic landscapes of datasets, and the availability of ‘big data’, health services research increasingly relies on linking data within and outside of health for meaningful insights.
Internationally, country approaches to data collection and processing for secondary research purposes (i.e., health systems research) vary. Data linkage requires common key variables to combine information from multiple sources. To understand these approaches and gain insights into good practices, exchange is vital.
Based on 30 case studies across 13 high-income countries, this review provides an overview of existing practices in data linkage for health services research. The case studies include: (1) large administrative datasets, (2) centralized locations that merge existing datasets; (3) databases which combine routinely collected data; (4) patient-centric electronic platforms; and (5) tools that facilitate research.
The development of national data landscapes relates to the design of healthcare systems, national data protection frameworks and cultural considerations:
Data—and data linkage possibilities—closely relate to the organizational design of healthcare systems. The case studies showcase how countries approach data linkage and use linkage to expand the possibilities of routinely collected data. They reflect divergent methods of allowing access to health-related data for researchers and using electronic patient records for secondary research purposes.
No single policy approach regulates digital health data. Some countries have comprehensive legislation on health data privacy; others have a national data governance framework incorporating health—some have both. The administrative structure of a country helps determine at what level of government (i.e., national, regional or local or a combination) data governance occurs. Meanwhile, how a country defines data content and processing, shaped by cultural characteristics, may present obstacles for data exchange. Despite differences, similar data principles underpin most regulatory approaches, informed by international guidance and regulations. Furthermore, the EU’s General Data Protection Regulation (2016) is the core of Europe’s digital privacy legislation and strives to streamline possible friction points.
COVID-19 catalysed breakthroughs in health data generation, collection and usage:
Not only did the pandemic draw more attention to cross-border healthcare and the exchange of health data, but it also spurred advancement in data generation, usage, sharing and linkage. It demonstrated possibilities for access to health data for secondary research and integrating new tools into national health information systems. Concurrently, however, this innovation also challenged established protocols and processes for data protection and privacy, highlighting the need to maintain these in the face of constrained resources and the health and social needs imposed by health emergencies.
Within the EU, initiatives for cross-country data sharing of individual level data, such as the European Health Data Space (EHDS) and Population Health Information Research Infrastructure (PHIRI), may catalyse the resolution of some of these issues and will have a substantial impact on how European health systems work with linked data.
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Health and Care Data: Approaches to data linkage for evidence-informed policy