| Tittel: | Health and care data: Approaches to data linkage for evidence-informed policy | | Signatur: | Elektronisk dokument | | Ansvar: | Katherine Polin, Dimitra Panteli, Erin Webb, editors | | Forfatter: | Polin, Katherine  / Panteli, Dimitra / Webb, Erin | | Materialtype: | Elektronisk dokument | | Utgitt: | Copenhagen : World Health Organization on behalf of the European Observatory on Health Systems and Policies, 2023 | | Omfang: | 248 s. | | ISBN/ISSN: | 9789289059466 | | Serie: | Health Systems in Transition ; Vol. 25 No. 2 | | Emneord: | E-helse / EU / Forskning / Helseopplysninger / Helseregistre / Helsetjenesteforskning / Pasientjournaler / Personopplysninger / Personvern / Regelverk / Registerdata / Stordata | | Innhold: | 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.
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. | | Eier: | HELSTILS |
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