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)

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

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

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

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

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

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

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

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 647,286. 5 years differences assumes around 293 thousand new diagnosis a year (as per 2013 incidence) Routes to diagnosis reimagined

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

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

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

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

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

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

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

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

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

What are the results? - Kidney 1. 6% 27% 21% The spot estimates show a 6% fall in EPS Routes to diagnosis reimagined

What are the results? - Kidney 2. 9% 29% 20% Comparing the Cis there may be a 9% fall Routes to diagnosis reimagined

What are the results? - Kidney 3. 2% 25% 23% But there may also be a 2% fall Routes to diagnosis reimagined

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

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

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

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

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

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

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

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 2006-2013: Vague Symptoms

For more information: Contact: ncinanalysts@phe.gov.uk For more of the award-winning Routes to Diagnosis visit: http://www.ncin.org.uk/publications/routes_to_diagnosis Ty for listening, various useful links Routes to diagnosis 2006-2013: Vague Symptoms