1. Providing real time online reports for local quality assurance Pär Stattin 1 Fredrik Sandin 2 David Örtquist 2 Lena Damber 3 Erik Holmberg 4 Håkan Cederberg 4 Mats Lambe 2 Dept of Urology, Umeå University 1 Regional Cancer Centers Uppsala 2 Umeå 3 Göteborg 4

2. www.npcr.se Disclosure conflict of interest I have not been paid for talks I have given advice to Ferring Pharmaceuticals The Swedish Association of Local Authorities and Regions and The Swedish Regional Cancer Centres funded NPCR and the real time online report project The Swedish Research Council, The Swedish Cancer Society & Västerbotten County council, Umeå funded my research The Swedish Research Council funded my costs for this conference

3. www.npcr.se Outline introduction to National Prostate Cancer Register of Sweden current status real time online reports work in progress

4. www.npcr.se National Prostate Cancer Register of Sweden nation-wide 1998 98% prostate cancer cases Swedish Cancer Registry tumour characteristics, waiting times, diagnostic work-up primary treatment from quantity register to quality register necessary vs. nice to know annual report long time date of diagnosis to registration online forms for registration since 2007 differences in many aspects of cancer care btw hospitals Van Hemelrijck Int J Epidemiol 2013

5. www.npcr.se Reported to NPCR within 1 month after date diagnosis range 0-93% 0 20 40 60 80 100% Sweden 27%

6. www.npcr.se Curative treatment for locally advanced Pca < 80 years, range 0-88% 0 20 40 60 80 100% Sweden 50%

7. www.npcr.se Improve impact of register data by use of real time online reports quality assurance & bench marking requires rapid registration short shelf time for many variables comprehensive data set requires interaction with data

8. www.npcr.se Compared with what? Data in relation to results by other health care providers goals for selected quality indicators

9. www.npcr.se INCA Information Network for Cancer Care platform all cancer quality registers data registration and display personal information on 100 000+ prostate cancer cases authentization for access

10. www.npcr.se 6 Diagnostics Waiting times last 6 months Waiting times selection time Waiting times Treatment No cases Risk category, trend Risk category, 6 months Risk category selection Bone scan 6 months Bone scan selection Capture 6 months Capture selection Treatment localized Pca No RP at clinic 6 months No RP selection Nerve sparing intention 6 months Nerve sparing intention selection Positive margin 6 months Positive margin selection Neoadjuvant ADT & RT6 months Neaoadjuvant ADT & RT selection

11. www.npcr.se Range hospitals 24-75 days

12. www.npcr.se median all 35 days range 24-75 days median metastases 19 days range 9-25 days

13. www.npcr.se Sweden 82% range 25-100%

14. www.npcr.se Sweden 55% range 12-75% Sweden 77% range 60-90%

15. www.npcr.se   How can we provide more actionable data? select indicators, cutoffs for 3 levels of quality  subpar red under lower cutoff  acceptable yellow over lower cutoff  good green over upper cutoff 30% 60%

16. www.npcr.se Quality indicators 10 indicators selected National Guidelines for Prostate Cancer care Capture, administration, and waiting times proportion of men reported to NPCR < 1 month after diagnosis (6%) 30%, 60% designated contact nurse (new) 45%, 90% multidisciplinary conference high risk cancer (32%) 30%, 60% time referral to first consultation < 60 days (74%) 70, 90% time biopsy to cancer information < 18 days (17%) 30%, 60%

17. www.npcr.se Quality indicators cont´ Treatment strategies proportion of men  very low risk Pca active monitoring (78%) 70%, 95%  high risk Pca eligible curative Tx who undergo bone scan (75%), 70%, 95% high risk Pca & life expectancy > 5 years who receive curative treatment (72%) 70% 95% Treatment documentation & execution proportion of men  Documented nerve-sparing intention (88%) 70%, 95%  negative surgical margins (76%) 70%, 90%

18. www.npcr.se

19. Conclusion  real time online reporting from quality register feasible  valuable tool for quality assurance  linkages can efficiently provide data for audits

20. www.npcr.se Timeliness registration in NPCR Months after diagnosis Cumulative proportion captured

21. www.npcr.se

22. Timeliness registration in NPCR Months after diagnosis Cumulative proportion captured