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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