1. Routes to diagnosis reimagined
We don’t just collect and hold cancer registration data, we produce studies from it
Sam Johnson, Cancer Information Analyst , National Cancer Registration and Analysis Service (NCRAS)

2. Contents What is Routes to Diagnosis?
What might be the impact of requiring consent?
What are the results: current versus potential
Summary
Questions
Take around 20 minutes
Routes to diagnosis reimagined

3. What is Routes to Diagnosis?
Routes to Diagnosis defines a methodology by which the route the patient follows to the point of diagnosis can be categorised, in order to examine demographic, organisational, service and personal reasons for delayed diagnosis.
Description of some patient pathways – GP ref
Routes to diagnosis reimagined

4. What is Routes to Diagnosis?
Routes to Diagnosis defines a methodology by which the route the patient follows to the point of diagnosis can be categorised, in order to examine demographic, organisational, service and personal reasons for delayed diagnosis.
GP referral
Description of some patient pathways – GP ref
Routes to diagnosis reimagined

5. What is Routes to Diagnosis?
Routes to Diagnosis defines a methodology by which the route the patient follows to the point of diagnosis can be categorised, in order to examine demographic, organisational, service and personal reasons for delayed diagnosis.
GP referral
Description of some patient pathways - EP
Routes to diagnosis reimagined

6. What is Routes to Diagnosis?
Routes to Diagnosis defines a methodology by which the route the patient follows to the point of diagnosis can be categorised, in order to examine demographic, organisational, service and personal reasons for delayed diagnosis. Eight different routes in total with incidence and survival data.
GP referral
Description of some patient pathways – EP. All routes – focus on SD, TWW, GP, EP
Emergency presentation
Routes to diagnosis reimagined

7. Description of some patient pathways – EP
Description of some patient pathways – EP. All routes – focus on SD, TWW, GP, EP
Routes to diagnosis reimagined

8. What might be the impact of requiring consent?
<30%
Two German regions introduced informed consent laws in the 1980s
Since then the cancer registries have been unable to collect over 70% of cases
Very rough methodology here – random reduction of dataset.
Mailbox: The Lancet Oncology Vol 2 January 2001
Routes to diagnosis reimagined

9. What are the results for incidence?
Current model
Consent required
2 million malignant cancers
600 thousand malignant cancers
Difference of 1 and a half million cancers cases over eight years. The equivalent of 5 years worth of data.
2,152,704 to 647, years differences assumes around 293 thousand new diagnosis a year (as per 2013 incidence)
Routes to diagnosis reimagined

10. What are the results? – cancer sites
The published data covers a large number of cancer sites which is reduced under a consent model
Route and Cancer sites
Routes to diagnosis reimagined

11. What are the results? – cancer sites
Current model
Consent required
2 million malignant cancers 56 cancer sites included
600 thousand malignant cancers
33 cancer sites included
Much less on rare and less common cancers: eye, gallbladder, heart, various leukaemia types, Hodgkin Lymphoma, small intestine
23 sites excluded due to low numbers. Less coverage for RLC sites. RLC cancers make up over half of cancer mortality, so less data on them is not a good thing.
Routes to diagnosis reimagined

12. What are the results? - overall
Results comparison – all cancers as published now
Routes to diagnosis reimagined

13. What are the results? - overall
Results comparison – all cancers under a consent model
Routes to diagnosis reimagined

14. What are the results? - colorectal
Results comparison – colorectal as currently published
Routes to diagnosis reimagined

15. What are the results? - colorectal
Results comparison – colorectal cancers under a consent model
Routes to diagnosis reimagined

16. What are the results? - kidney
Results comparison – kidney as currently published
Routes to diagnosis reimagined

17. What are the results? - kidney
Results comparison – kidney cancer under a consent model
Routes to diagnosis reimagined

18. What are the results? - Kidney
Dotted lines on the graph represent confidence intervals – account for statistical dispersion of the possible results
Routes to diagnosis reimagined

19. What are the results? - Kidney1. 6%
27%
21%
The spot estimates show a 6% fall in EPS
Routes to diagnosis reimagined

20. What are the results? - Kidney2. 9%
29%
20%
Comparing the Cis there may be a 9% fall
Routes to diagnosis reimagined

21. What are the results? - Kidney3. 2%
25%
23%
But there may also be a 2% fall
Routes to diagnosis reimagined

22. What are the results? - demographics
Current model
Consent required
2 million malignant cancers 56 cancer sites included Split by sex Split by age
600 thousand malignant cancers
33 cancer sites included
Fewer sites
Larger age bands, fewer sites
The more the data are split, the less we can say of the results
Further splits of the data require larger groupings and a loss of granualrity
Routes to diagnosis reimagined

23. What are the results? – age split
Sixteen thousand data points (Split by site, year, age band and route)
Have to exclude bubbles with fewer than 660 cases. Many smaller age groups and sites are now gone
Routes to diagnosis reimagined

24. What are the results? – age split
Age breakdown for kidney – published results. Still relatively big CIs
Routes to diagnosis reimagined

25. What are the results? – age split
Consent - Kidney
Age breakdown for kidney – consent results. Huge Cis.
Routes to diagnosis reimagined

26. What are the results? - demographics
Current model
Consent required
2 million malignant cancers 56 cancer sites included Split by sex Split by age Split by deprivation quintile Split by ethnicity
600 thousand malignant cancers
33 cancer sites included
Fewer sites
Larger age bands, fewer sites
Currently published splits by deprivation and ethnicity – be less of these type of result under a consent model
Routes to diagnosis reimagined

27. What are the results? – further splits
Current model
Consent required
2 million malignant cancers 56 cancer sites included Split by sex Split by age Split by deprivation quintile Split by ethnicity Split by smaller geographies Children, teenagers and young adults results
600 thousand malignant cancers
33 cancer sites included
Fewer sites
Larger age bands, fewer sites
Split by smaller geographies
Children, teenagers and young adults results
No local data, nothing for CTYA
Routes to diagnosis reimagined

28. Survival analysis for around 17 sites with fewer demographics breakdowns
Routes to diagnosis reimagined

29. In summary
Our overall results can still be produced and mostly reflect current data The big 4 cancers can be examined in more detail Many rare and less common cancer sites are no longer viable for analysis Our results have a bigger range of uncertainty around them Survival analysis is severely limited
High level results are the same. As soon as we go below that we can no longer be confident of the results.
Routes to diagnosis : Vague Symptoms

30. For more information: Contact: ncinanalysts@phe.gov.uk
For more of the award-winning
Routes to Diagnosis visit:
Ty for listening, various useful links
Routes to diagnosis : Vague Symptoms