Access to National Health Data Systems

Objectives

To review national progress with, and good practice examples in establishing comprehensive systems of performance measurement in European countries and in granting researchers access to corresponding patient-oriented data for the study of health services in a disease-based perspective.

The main objectives of this work package include:

  • Identify and analyse progress with processes that allow researchers access to data for performance measurement;
  • Identify national gaps in health care data for health services research;
  • Identify national barriers of access to corresponding administrative health care data for researchers;
  • Map strategies to improve data access for research based on national good practice;
  • Identify and analyse good practice in countries where data linkage across providers and treatment episodes is successful;
  • Identify and analyse ways to reconcile data access for research with data protection requirements.

Results so far

In order to identify best practice examples of national data systems, WP3 has used a series of methods including a systematic literature review, a comprehensive survey of countries participating in the EuroREACH project and a data mapping process.

1. The systematic literature review revealed several best practice examples of comprehensive data systems:

  • Oxford record linkage study (ORLS).
  • General Practice Research Database (GPRD).
  • Health-related data – Denmark.
  • Western Australia data linkage system (WADLS).
  • US – All Payer Claims Databases (APCD).
  • US – Mini-Sentinel distributed data system.
  • Canadian Institute for Health Information (CIHI) databases.

2.  The primary focus of the survey was the availability of person-level health services utilization data, covering a significant, representative proportion of the national population. All participating countries were surveyed via an internet-based interface to facilitate data collection and analysis. Each participant was asked to complete the country narrative and database passport for up to 5 databases known to exist in his country, with first priority to be given to person-level utilization data. To the information provided by the EuroREACH partners, we added information provided by Denmark, which provided a representative example of a comprehensive system of health related data.

3. For the purpose of data mapping, WP3 developed three survey instruments:

  • Country narrative
  • Decision tool for evaluating individual databases
  • Database passport

WP3 has conducted two EuroREACH expert panels. Expert panel members are specialists in the fields of epidemiology, health services and public health research, health care administrative data and data linkage in Australia, Canada, Denmark, England, France and the United States.  During the first meeting of the expert panel, held in Tel Aviv, Israel on May 24-25, 2011, experts shared information on issues related to the development of comprehensive regional and national databases for health research including privacy protection, linkage strategies and governance.  In addition, several members of the panel reported specifics on comprehensive linked data systems existing in their own countries.

Deliverables

Good practice on data linkages and performance measurement in relation to access to national health care data systems (.pdf)