Download What does the cancer intelligence landscape look like now?

What does the cancer
intelligence landscape look like
now?
Nicky Coombes
SSCRG Programme Manager
Data Drivers
Government
 A spotlight on the role of data and transparency
Commissioning
 NHS Outcomes Framework
Regulation
 New regulation framework (CQC & Monitor)
The ‘public’, patients and families
 (e.g. ‘Friends and family test’)
Providers of information in the
new NHS
 Main sources/providers
 Health & Social Care Information Centre (HSCIC)
 National Audits
 ONS
 PHE (Civil Service)- Cancer Registries
 NHS England Business Intelligence Teams (ATS/CSU)
 Information Intermediaries (e.g. CRUK, Dr Foster,
MacMillan)
Public Health England:
Emerging ‘Intelligence’ Structures
Public Health England
Chief Knowledge Officer
Prof. John Newton
Disease
Registration
Service
Dr Jem Rashbass
Knowledge and
Intelligence & Health
Intelligence Networks
(Peter Bradley)
National Cancer
Intelligence Network
Chris Carrigan
Knowledge &
Intelligence Teams
(NCIN)
Office for Data
Release
Chris Carrigan
Cancer functions in Public Health England
• Prevention (smoking; obesity; HPV vaccination, etc.)
• Screening and its QA
• Environmental aetiology (including cluster analyses)
• Public Awareness Campaigns (Be Clear on Cancer
Campaigns) – links with Local Authorities and Health &
Well Being Boards
• Cancer Intelligence:
– Registration
– Analysis
– Reporting
• PHE heavily involved in the Cancer Taskforce
National Cancer Registration Service:
Data Sources
‘New’ Datasets
 Radiotherapy Dataset (RTDS), 2009…..
 National Cancer Patient Experience Survey, 2010…..
Diagnostic Imaging Dataset (DIDs), 2012..
 Systemic Anti-Cancer Therapy Dataset (SACT), 2012….
 Cancer Outcomes & Services Dataset (COSD), 2013…..
National Cancer Audits
-
New contracts for National Lung and Colo-rectal
cancer audits awarded December 2014:
- Lung Cancer – Royal College of Physicians with
National Cancer Registration Service
- Colo-rectal Cancer – Royal College of Surgeons
with the HSC Information Centre
-
Contract for Head & Neck Cancer Audits not awarded
-
Upper GI Cancer audit on-going; contract until 2016
-
New Prostate Cancer Audit began 2014
-
Breast cancer audit likely to be commissioned in 2015
Feeding back: examples
(www.ncin.org)
 E Atlas
 Reports and data briefings
 Cancer Commissioning Toolkit
 Service & GP Profiles
 COSD portal – Clinical Headline Indicators
10
Cancer Service Profiles for Lung Cancer
Trust is significantly different from England mean
Trust is not significantly different from England mean
Statistical significance cannot be assessed
England mean
Data displayed are for patients for which the trust of treatment can be identified. For a full description of the data and methods please refer
to the 'Data Defintions' document. For advice on how to use the profiles and the consultation, please refer to 'Profiles guidance'. Please
direct comments/feedback to [email protected]
England median
Select
SelectTrust/MDT
Trust/MDT
Section
# Indicator
1 Number of newly diagnosed lung cancer patients per year, 2010 [experimental] (1)
Size
2 Number of NLCA patients - lung cancer
3 Number of NLCA patients - mesothelioma
(based on newly
diagnosed patients, 2010)
Demographics
4 Patients (from #1) aged 70+
5 Patients (from #1) with recorded ethnicity
6 Patients (from #5) with recorded ethnicity which is not White-British
8 Male patients (from #1)
9 Number and proportion of patients (from #2) with a stage assigned
10 Number and proportion of patients, excluding SCLC, with stage I or II assigned
11 Number and proportion of patients, excluding SCLC, with a stage IIIA assigned
12 Number and proportion of patients, excluding SCLC, with a stage IIIB and IV assigned
14 Peer review: Does the specialist team have full membership? (3)
15 Peer review: Proportion of peer review indicators met
16 Peer review: are there immediate risks? (4)
17 Peer review: are there serious concerns? (4)
18 Number and proportion of patients (from #2) seen by CNS (5)
19 Number of urgent GP referrals for suspected cancer
20 Number and proportion of patients (from #2) with confirmed NSCLC
Throughput
21 Number and proportion of patients (from #2) with confirmed SCLC
and
22 Number and proportion of patients (from #2) with confirmed NSCLC who are diagnosed NOS
pathology
23 Number and proportion of patients (from #2) with histological confirmation of diagnosis
24 Estimated proportion of tumours with emergency presentations [experimental]
25 Q2 2012/13: Urgent GP referral for suspected cancer seen within 2 weeks
Waiting
times
26 Q2 2012/13: Treatment within 62 days of urgent GP referral for suspected cancer
27 Urgent GP referrals for suspected cancer diagnosed with cancer [experimental]
28 Cases treated that are urgent GP referrals with suspected cancer [experimental]
29 Q2 2012/13: First treatment began within 31 days of decision to treat
30 No. and proportion of patients (from #2) receiving surgery, chemotherapy and/or radiotherapy
31 No. and proportion resected of patients (from #2) excluding confirmed SCLC
Practice
32 No. and proportion resected of patients (from #2) with confirmed NSCLC
33 No. and proportion resected of patients (from #2), excluding confirmed SCLC ,with stage I and II disease
34 No. and proportion of patients (from #2) with confirmed SCLC receiving chemotherapy
35 No. and prop. of patients (from #2) with stage IIIB/IV, PS 0-1 excl. conf. SCLC, receiving chemotherapy
Outcomes
and
Recovery
Percentage or rate
No. of
patients/
cases or
value
304
329
11
188
295
3
7 Patients (from #1) who are Income Deprived (2)
13 Proportion of patients (from #2) with a Performance Status assigned
Specialist
Team
75th
25th
Lowest
in England
NHS Acute Trust
36 First outpatient appointments and proportion of all outpatient appointments
37 NLCA: Median survival in days and adjusted hazard ratio for mortality
38 NLCA: Proportion of patients surviving at one year and adjusted odds ratio of surviving 1 year
39 Patients surveyed & % reporting always being treated with respect & dignity (6)
Patient
Experience - 40 Number of survey questions and % of those questions scoring red and green % Red
CPES (4)
41 (7)
% Green
161
326
83
36
167
286
SA
SA
SA
SA
206
406
184
40
21
228
94
135
15
103
34
14
174
50
48
40
27
28
23,053
176
34%
13
0
Trust
62%
97%
1%
29%
53%
99%
29%
13%
58%
87%
Yes
85%
No
No
63%
Trust rate or percentage compared to England
Lower 95% Upper 95%
Lowconfidence confidence England
est
limit
limit
56%
94%
0%
67%
98%
3%
47%
97%
24%
9%
53%
83%
58%
100%
35%
17%
64%
90%
Highest
in England
207
191
10
61%
93%
7%
16%
55%
92%
24%
14%
62%
89%
Range
Highest
Source
Period
588
585
31
NCDR
NLCA
NLCA
2010
2011
2011
39%
75%
NCDR
2010
66%
0%
100%
46%
NCDR
NCDR
2010
2010
7%
43%
34%
72%
NCDR
NCDR
2010
2010
36%
10%
100%
68%
NLCA
NLCA
2011
2011
4%
13%
2%
30%
80%
100%
NLCA
NLCA
NLCA
2011
2011
2011
NCPR
2010/11
NCPR
2010/11
NCPR
NCPR
NLCA
2010/11
2010/11
2011
41
1
0
89%
57%
68%
56%
12%
11%
69%
47%
52%
9%
8%
64%
40%
60%
16%
17%
74%
54%
96%
73%
25%
25%
100%
53%
17%
26%
48%
68%
58%
41%
0.95
1.43
n/a
n/a
n/a
92%
52%
21%
19%
78%
47%
13%
20%
38%
52%
44%
41%
0.82
0.97
98%
87%
30%
33%
100%
58%
22%
33%
59%
80%
71%
41%
1.11
2.11
79%
293
62%
12%
19%
77%
37%
97%
80%
24%
39%
99%
60%
16%
21%
53%
68%
55%
32%
1.0
1.0
83%
0%
0
100%
853
CWT
2010/11
0%
0%
93%
100%
NLCA
NLCA
2011
2011
0%
79%
NLCA
2011
52%
100%
NLCA
2011
2%
97%
HES
2011
88%
100%
CWT
2012/13 Q2
0%
4%
100%
46%
CWT
CWT
2012/13 Q2
2011/12
0%
91%
36%
76%
100%
100%
CWT
CWT
NLCA
2011/12
2012/13 Q2
2011
0%
0%
38%
45%
NLCA
NLCA
2011
2011
0%
0%
0%
100%
100%
100%
NLCA
NLCA
NLCA
15%
68%
PBR SUS
2011
2011
2011
2011/12
0.57
0.40
1.49
2.67
NLCA
NLCA
2011
2011
66%
0%
0%
100%
78%
69%
CPES
CPES
CPES
2011/12
2011/12
2011/12
Notes: (1) Large differences between indicators #1 and #2 are likely to indicate a large fraction of patients referred to or from the trust (2) Based on patient postcode and uses the Index of Multiple Deprivation (IMD) 2010; (3) Peer Review (NCPR) source IV=Internal Verification, PR=Peer Review, SA=Self-Assessment; Amn=Amnesty; (4) The immediate risks or serious concerns may now have been resolved or have an action plan in place for resolution; (5) CNS = Clinical Nurse Specialist; (6) value = total
number of survey respondents for tumour group. (7) Based on scoring method used by the Department of Health - red/green scores given for survey questions where the trust was in the lowest or highest 20% of all trusts. Questions with lower than 20
respondents were not given a score. Italic value displayed = the total number of viable survey questions, used as the denominator to calculate the % of red/greens for the trust; (8) CPES = Cancer Patient Experience Survey.
n/a = not applicable or not available
Version 2.0 - March 2013
Clinical Commissioning Group
Outcomes Indicator Set
2013/14 under 75 mortality rate from cancer
 1 and 5 year survival from all cancers
 1 and 5 year survival from breast, lung & colorectal cancers
2014/15 additional indicators for cancer
 cancers diagnosed via emergency routes
 5 year survival - children
 cancer stage at diagnosis
 cancers detected at stage 1 or 2
 1 and 5 yr survival for lung, breast and colorectal cancers
NHS Outcome Framework
2013/14 Dashboard
HSC Information Centre Indicator Portal
Examples of the clinical value of
new data
 Supporting ‘intelligent commissioning’
 Demonstration of variation
 Teasing out the causes of variation
 Demonstrating value of specialisation
 Building data into quality improvement
 Adding outcome data into Peer Review
 More meaningful regulation - CQC
 Providing robust evidence behind National Guidelines and
QuQuality Standards (NICE)
 Supporting Clinical Trials
Conclusions
• The quality and range of clinically relevant data on cancer is
increasing rapidly
• The collection and intelligent use of data are at the heart
of good clinical practice and commissioning
• We now have a large and expanding clinical community engaged
with cancer data
• Feedback and ongoing interaction with clinicians is an essential
part of the process – peer pressure is powerful
• There is a need to improve how information is used at a local level
Cancer 52/NCIN joint project
on rare and less common
cancers
April 2015
Background
Joint project to identify rare and less common cancers with
an incidence of less that 6/100,000
Consultation with SSCRG and Cancer 52 members to
identify lists and codes all of which have been further refined
since the last meeting
Data analysis complete for England, and QA process
underway
Data have been ‘sense’ checked by SSCRGs
numbers and crude incidence rates per 100, 000 population
with breakdowns by year and sex
Celtic data waiting on the Welsh part of the request before it
is sent to NCIN
Children
Children
19
Bone sarcomas
Sarcoma: connective and soft tissue
Kidney
Central Nervous System (incl brain) malignant
Hodgkin lymphoma
Non-Hodgkin lymphoma
Leukaemia: acute lymphoblastic
Leukaemia: other (all excluding ALL, AML and CLL)
Leukaemia: acute myeloid
Central Nervous System (incl brain) non-invasive
Kidney and unspecified urinary organs
Overview of cancer intelligence tools produced by PHE
Teenagers & young adults
Teenagers and young adults
20
Bone sarcomas
Sarcoma: connective and soft tissue
Kidney
Central Nervous System (incl brain) malignant
Hodgkin lymphoma
Non-Hodgkin lymphoma
Leukaemia: acute lymphoblastic
Leukaemia: other (all excluding ALL, AML and CLL)
Leukaemia: acute myeloid
Central Nervous System (incl brain) non-invasive
Colorectal
Melanoma
Female breast cancer
Cervix
Ovary
Testis
Head and neck – Thyroid
Cervix (in-situ)
Overview of cancer intelligence tools produced by PHE
Central Nervous System
CNS
21
Benign brain and other parts central nervous system
Benign neoplasm of Craniopharyngeal duct
Benign neoplasm of meninges
Benign neoplasm of Pineal gland
Benign neoplasm of Pituitary gland
Malignant neoplasm of brain
Malignant neoplasm of meninges
Malignant neoplasm of Pineal gland
Malignant neoplasm of Pituitary gland
Malignant neoplasm of spinal cord cranial nerves and other parts of central nervous system
Uncertain or unknown behaviour brain and other parts central nervous system
Uncertain or unknown behaviour Craniopharyngeal duct
Uncertain or unknown behaviour meninges
Uncertain or unknown behaviour Pineal gland
Uncertain or unknown behaviour Pituitary gland
Overview of cancer intelligence tools produced by PHE
Gynae – (1)
Squamous carcinoma
Adenocarcinoma
Adenosquamous
Gynae - Cervical Neuroendocrine
Other epithelial
Unclassified epithelial
Other
Serous carcinoma
Mucinous carcinoma
Endometrioid carcinoma
Clear cell carcinoma
Gynae - Ovarian Other classified epithelial and epithelial-stromal tumours
Unclassified epithelial
Borderline
Sex cord-stromal or germ cell tumours
Miscellaneous and unspecified
Endometrioid adenocarcinoma
Clear cell and papillary serous carcinoma
Other classified and unclassified carcinoma
Leiomyosarcoma
Gynae - Uterine
Endometrial stromal sarcoma
Miscellaneous sarcoma
Mixed epithelial and mesenchymal tumours
Miscellaneous and unspecified
22
Overview of cancer intelligence tools produced by PHE
Gynae (2)
Squamous carcinoma
Adenocarcinoma
Gynae - Vulva Other classified and unclassified epithelial
Melanocytic
Miscellaneous and unspecified
Squamous carcinoma
Adenocarcinoma
Other classified and unclassified epithelial
Gynae - Vagina
Sarcoma
Melanocytic
Miscellaneous and unspecified
Gynae Placenta
Placenta
23
Overview of cancer intelligence tools produced by PHE
Haematology
Haematology
24
Monoclonal Gammopathy of Undetermined Significance
Hodgkin Lymphoma
Non-Hodgkin Lymphoma
Multiple myeloma
Leukaemia: acute lymphoblastic
Leukaemia: chronic lymphocytic
Leukaemia: rarer types
Leukaemia: acute myeloid
Leukaemia: chronic myeloid
Myelodysplastic Syndromes
Other
Overview of cancer intelligence tools produced by PHE
Head & Neck
Head & Neck
25
Head and neck - Other sites
Oropharynx
Oral cavity
Palate
Salivary glands
Nasopharynx
Hypopharynx
Nasal cavity (only excluding middle ear)
Middle ear and external auditory canal
Sinuses
Larynx
Bone tumours
Overview of cancer intelligence tools produced by PHE
Skin
Skin
26
Fibro-epithelial tumour of Pinkus
Malignant pilomatrixoma.
Malignant cylindroma.
Primary adenoid cystic carcinoma. Same as adenoid cystic adenoid and Malignant cylindroma
Merkel cell carcinomas
Neuroendocrine carcinoma (Merkel cell tumour/trabecular carcinoma).
Skin Appendage
Microcystic adnexal carcinoma.(sweat gland carcinoma
Apocrine carcinoma.
Hidradenocarcinoma.
Malignant spiradenoma ( I think the first one is not malignant) but the second in brackets is
(spiradenocarcinoma).
Eccrine epithelioma (syringoid carcinoma).
Digital papillary adenocarcinoma.
Eccrine porocarcinoma.
Sebaceous carcinoma.
Tumours associated with Muir–Torre syndrome. ( Sebaceous carcinoma see above)
Primary mucoepidermoid carcinoma.
Primary mucinous carcinoma.
Epithelioid sarcoma.
Atypical fibroxanthoma (AFX) (superficial malignant fibrous
histiocytoma, superficial sarcoma not otherwise specified).
Dermatofibrosarcoma protuberans (DFSP).
Liposarcoma
Leiomyosarcoma.
Primary cutaneous rhabdomyosarcoma.
Mixed tumour, NOS
Angiosarcoma.(Haemangiosarcoma
Haemangioendothelioma.
Malignant epithelioid haemangioendothelioma
Overview of cancer intelligence tools produced by PHE
Upper
GI
Upper GI
27
Duodenal cancer
Primary liver (excluding intrahepatic bile duct cancer)
Biliary tract cancer (or cholangiocarcinoma or bile duct (intra and extra))
Gallbladder cancer
Ampulla of Vater
Overview of cancer intelligence tools produced by PHE
Urology
Urology
Penile cancer
Testicular (with a subgroup of Sertoli cell - 8640 and Leydig cell - 8650)
Para-testicular neoplasms (epididymis and spermatic cord)
Ureter and renal pelvis
Non-TCC bladder
Urethral cancer
Small-cell prostate
28
Overview of cancer intelligence tools produced by PHE
Sarcoma (paper copy supplied)
29
Overview of cancer intelligence tools produced by PHE
Breast Colorectal
Colorectal Breast & Lung
Anal cancer
Nipple and areola
Lung
Pulmonary carcinoids
Thymomas
Solitary fibrous tumours of pleura
Mesothelioma
30
Overview of cancer intelligence tools produced by PHE
Next steps
Report writing (Cancer 52)
Report publication wb 8th June
31
Overview of cancer intelligence tools produced by PHE