A toolbox to identify and analyse good practice in improving access of data for researchers

Objectives

The objective of this WP is to finalise the Handbook and to transform it into a digitized web-based health care data monitoring tool for access to health care data for cross-country comparative research in efficiency and quality of health care services from a patient-oriented, disease-based perspective. This website, the Health Data Navigator (HDN) provides and promotes generic standards to analyse and identify data access for comparative health services research. The HDN covers both questions on how to use national level data (and its challenges, such as data protection rules) as well as the best use of health care information collected at European and international level, including specific initiatives. It therefore serves different audiences and users: These are both among the research community but also at policy and stakeholder level as a tool to learn about good policy practice in the field of health information systems for chronically ill patients.
Direct link to the HDN: www.healthdatanavigator.eu
More information on the HDN

Results

This work package maps strategies to improve data access for research taken from national good practice based on the framework of guiding questions for policy analysis and the data domains identified in WP 1. This includes the mapping of how information systems across providers and health care settings work together, the types of information being collected and the stakeholders involved, such as data suppliers and end-users. Data sources are evaluated for their level of interoperability. The role of electronic records is addressed. Analysis of best practice of data linkages for research: besides the role of electronic records this concerns questions of data anonymisation or synthetic matching techniques, including statistical methods to link records from different datasets/surveys. A sub-task is to study the contribution of micro-simulation models to stimulate cooperation between administrations on data linkage and data use for research and policy analysis. Analysis of best practice in reconciling data protection requirements with access to semi-aggregated or anonymous micro-data sets for health services research (there is some overlap with the “linkages” topic). The Expert Panel meets three times: to provide input but also to review and advise. Participants are national health care data researchers and data protection specialists.

Deliverables

Draft of the EuroREACH Handbook (.pdf)