1. 1 THE SWEDISH QUALITY REGISTRIES – Professionals collecting data and publicizing them Prague 2009-03-05 Dr Karl G Prütz [ kg.prutz@med.lu.se ] Board member of the Swedish Renal Registry [ www.snronline.se ]www.snronline.se Department of Nephrology and Transplantation Malmö University Hospital

2. 2 HEALTH CARE QUALITY REGISTRIES IN SWEDEN First registry started 1975 Swedish Knee Artrhoplasty Registry Lund University Hospital Individual data on Surgical methods Implant types and materials Follow up of processes of care and outcome

3. 3 HEALTH CARE QUALITY REGISTRIES IN SWEDEN (cont.) Small number of new registries followed Slow and uncertain increase and future Driven by small groups of enthusiast doctors Supported by medical specialists associations Little enthusiasm or support from providers, authorities or the general public Inadequate funding

4. 4 HEALTH CARE QUALITY REGISTRIES IN SWEDEN (cont.) In 1991 joint effort of the National Board of Health and Welfare and the Swedish Association of Local Authorities and Regions Cooperation between the regulatory authority and the health care providers Quality Control of the Quality Registries Funding by tax payers money – if considered adequate Varying sponsorship from the health care industry

5. 5 HEALTH CARE QUALITY REGISTRIES IN SWEDEN (cont.) This decade Increasing number of registries Better funding Avoidance of industry sponsoring Increasing transparency of the results on the clinic level – also to the public Acknowledged and praised by national and regional politicians, patients organisations and opinion leaders

6. 6 Present situation Open Comparisons of Health Care Quality in Sweden published yearly since 2006 Large majority of the medical indicators are provided from the >60 national quality registries run by the medical profession Superior data quality compared to central administrative registries

7. 7 Are there no problems? More than 60 registries, and increasing Insufficient funding of most registries Inadequate IT-structure – poor connection to computerized medical records Many registries have incomplete coverage of patients, clinics and hospitals Uncertain validity of results

8. 8 …no problems? (cont.) Many important disease groups and health care areas not covered at all Primary care Psychiatry Strong focus on evidence based processes of care and hard endpoints Only a few registries have measures of HRQoL or patient satisfaction

9. 9 From the Swedish Renal Registry: Hemodialysis Vascular Access Catheters (VAC) are bad Should only be used as a last resort One of every ten patients with a VAC dies from complications, mostly septicemia High prevalence of VAC signals deficiencies in several complex processes of dialysis care …a systematic failure of collaboration between the renal team (dialysis doctors and nurses), vascular surgery (including lack of operation room capacity), interventional radiology, …

10. 10 Hemodialysis Vascular Access Catheter (VAC) use, autumn 2007

11. 11 Key points Legislative requirement and support Indicators based on solid evidence Adequate funding (?) Useful for health care management and resource allocation Useful for health care quality improvement Useful for patients

12. 12 Communication of results Everything should be described as simple as possible, but not a bit simpler. Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted. Albert Einstein (1879-1955)

13. 13 Measuring and improving the quality of healthcare …isn't about learning how good you are, but about how bad you are. If you can stop bad things happening, then what remains is better than it was. Andrew Moore DSc, Editor of Bandolier http://www.medicine.ox.ac.uk/bandolier/Extraf orbando/Waste.pdf http://www.medicine.ox.ac.uk/bandolier/Extraf orbando/Waste.pdf

14. 14 Conclusion No health care system can provide all patients with the best hospitals (or doctors, nurses, …) Health care systems can make insufficient providers either improve (or close down) Health Care Quality Registries are an essential component in achieving improvement

15. 15 Additional information Swedish Quality Registry homepage in english http://www.kvalitetsregister.se/index.php?o ption=com_content&task=view&id=63&Ite mid=592 http://www.kvalitetsregister.se/index.php?o ption=com_content&task=view&id=63&Ite mid=592 Official booklet with introduction and descriptions of the 60+ registries http://www.kvalitetsregister.se/images/stori es/documents/2007_qr.pdf http://www.kvalitetsregister.se/images/stori es/documents/2007_qr.pdf