1. EVALUATING SWEDISH QUALITY REGISTERS BERTIL LINDAHL www.kvalitetsregister.se

2. Definition of a National Quality Register (NQR) A national quality register contains individualized data concerning patient problems, medical interventions, and outcomes after treatment; within all healthcare production. It is annually monitored and approved for financial support by an Executive Committee.

3. Quality registers Decision committee Steering committee Expert group QR - office Reference groups National register service SoS Register Centra (RC) Regional Cancer Centra (RCC)

4. Vision for NQRs NQRs are used in an integrated and active way for: continuous learning and improvement research management to create the best possible health and care together with the individual.

5. Evaluating quality of NQRs Structure Process Outcome The Donabedian model

6. Structure – NQR steering committee and chairman (registerhållare) good support in health care with good geographical spread multiprofessional patient representatives CPUA – the legally responsible from the county council – Access to necessary competences – Appropriate IT-system in place – Well defined quality indicators – System for continuous validation and monitoring

7. Process – Data are continuously reported to the registry – Data are validated and the completeness (täckningsgrad) evaluated – Data are regularly / continuously analyzed and reported back to Reporting units Other stake holders Used in “open comparisons” (öppna jämförelser) – Data are delivered and used for: Local quality improvement Bench marking Research – Results are publically reported on hospital level

8. Outcome – Successful improvement of care Better medical results Improved patient involvement and patient satisfaction More equitable care Lower costs – Used for management of care at different levels – Successful research Publication in international journals Industry collaboration Innovations

9. Certification (2014) NQR candidate – 24 registers NQR level 3 – 52 registers NQR level 2 – 22 registers NQR level 1 – 7 registers

10. CURRENT STATUS REPORT SPRING 2014 - for the national investment in NQRs Report on how the NQRs meet the goals in the different areas

11. 0 50 100 150 200 250 300 350 400 år 2009år 2010år 2011år 2012år 2013 + 183 % Number of articles published in scientific journals

12. 0 5 10 15 20 25 30 35 40 1471013161922252831343740434649525558616467 Number of articles/register

13. External evaluations - the Swedish Agency for Health and Care Services Analysis

14. Completeness in relation to year of start of the register

15. Conclusions Evaluating the Swedish NQRs is a complex task – Several different types of registers – Several aspects of quality to consider – Various degree of maturity – Various difficult to evaluate the structure, process and outcome There has been a substantial positive development of the quality of the NQRs Large differences between different NQRs There are remaining challenges in several areas

16. Thank you for the attention!