EVALUATING SWEDISH QUALITY REGISTERS BERTIL LINDAHL

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.

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

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.

Evaluating quality of NQRs Structure Process Outcome The Donabedian model

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

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

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

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

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

år 2009år 2010år 2011år 2012år % Number of articles published in scientific journals

Number of articles/register

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

Completeness in relation to year of start of the register

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

Thank you for the attention!