Coordination with European and International Health Data Initiatives

Objectives

This work package will take stock of previous and ongoing projects and initiatives and identify the interfaces with these projects to improve access to research into efficiency and quality of health care for patient-oriented, disease-based information in a comparative perspective. This will include mapping/analysing the strategies pursued in various projects to improve access to patient-oriented data for comparable research and bottom-up comparative studies and data collections from cross-country initiatives. The goal will be to identify and analyse best practice examples of cross-country research other than via cross-national, European databases run by administrations (studied under WP4).

Results so far

  • EU projects and studies which addressed certain chronic conditions (Asthma, Cancer, Cardiovascular Diseases and Diabetes)
  • Several initiatives which were summarized under ‘Quality and Efficiency Improvement’
  • Equity aspects and initiatives on mental health were analyzed to identify eligible examples for cross-country research.

 

In a second step, all initiatives were reviewed again and classified, based on following inclusion criteria:

  • Comparative cross-country projects/initiatives providing patient-level, disease-oriented data, preferably across several dimensions  of the framework
  • Preferably providing data across sectors (population-based) and longitudinally
  • Exceptions for promising projects despite not meeting both inclusion criteria of providing patient-level data and being disease-oriented

Identified Success Factors

Following success factors have been identified to learn how current and future projects can replicate what made previous projects successful (and to avoid the pitfalls of unsuccessful projects), e.g.:

 

  1. very long duration and/or still on-going, and consistent update of follow-ups,
  2. successfully building on previous projects,
  3. results available online/easily accessible,
  4. targeting several health problems and/or different levels (system, region, provider),
  5. linking quality of care in different settings to costs and/or prices,
  6. combination of administrative and survey data, and

 

Identified Challenges

Following main challenges (weaknesses) could be identified:

  1. access to different sources (needed by complex systems of health indicators for instance)
  2. continuous update and regular maintenance
  3. recommendation Hardly patient-level and disease specific data

Interfaces and Possible Learning and Improvement Effects so far

Based on the success factors and key facts of the Best Practice examples, interfaces between them could be identified. Furthermore, in a first attempt, it has been started to identify promising learning and improvement effects (fig):

  • euroHOPE gives a of a list of indicators to be routinely collected and published by the EU – Recommendation: use of BIRO technology
  • establishment of nationwide databases with multiple administrative registry linkages at the individual-patient level Recommendation: BIRO/EUBIROD could be extended
  • Additionally, euroHOPE will pilot patient surveys on quality-of-life and satisfaction –  Recommendation: use of COMPARE techniques
  • Recommendation: BIRO can be extended to further diseases and has even been specifically conceived and realized for that, since the entire platform may be parameterized to allow the computation of health indicators for a wide range of diseases (a new project has already been in process of planning)

Deliverables

Poster EuroREACH
Report WP2: Coordination of Health Data Initiatives