An Intelligence Framework for Cancer

Objectives

The framework seeks to establish a world-class cancer intelligence system for England through 2014/15, making high-quality, timely, credible, comparable, confidential, clear and compelling information available to improve cancer outcomes, treatment experience, service quality, patient choice and public accountability.[1][2][3]It supports the Government ambition to save an additional 5,000 lives by 2014/15, particularly through better understanding and reduction of late diagnosis.[1][4]

• Improve intelligence across prevention, screening, early diagnosis, treatment, survivorship, care and support, and end-of-life care, so that risks, inequalities, service variation, patient needs and outcomes can be identified and addressed.[5][6][7]
• Strengthen information on incidence, prevalence, survival, mortality, stage at diagnosis, emergency presentation, recurrence, metastatic disease, treatment, patient experience, safety, expenditure and cost-effectiveness.[8][9][10]
• Modernise cancer registration into a comprehensive, near-real-time national service that uses routine clinical data to support care monitoring, quality improvement, safety, performance management, research and outcome assessment.[11]
• Improve staging completeness and accuracy, with an intended target of accurate staging for more than 90% of cases where staging is possible by the end of 2012.[12]
• Establish interoperable datasets and approved information standards so that data are captured once, linked across systems, consistently processed and reused for epidemiology, planning, commissioning, audit, research and service improvement.[13]
• Enable patients and carers to compare services and make informed choices, while enabling clinicians, providers, commissioners, regulators, local government and the public to use intelligence for decision-making and scrutiny.[1][4][14]
• Support measurement through the Public Health, National Health Service and Social Care Outcomes Frameworks, including survival, mortality, recovery, quality of life, stage at diagnosis, patient experience and safety.[3][5]
• Reduce duplication, improve efficiency and make better use of existing clinical and administrative information while maintaining the confidentiality of personal information.[2][3][15]

Implementation

Implementation relies on the National Cancer Intelligence Network (NCIN), a UK-wide partnership that coordinates collection, linkage, analysis, interpretation, publication and research using cancer registration, clinical, administrative and patient-reported information.[16][17]Delivery involves the Department of Health, Public Health England, the NHS Information Centre for Health and Social Care, cancer registries, the NHS Commissioning Board, the Office for National Statistics, providers, commissioners, clinicians, regulators, researchers, charities, patient groups and professional bodies.[18][19][20]

• Require National Health Service and independent-sector providers delivering NHS services to collect and submit approved patient, treatment, waiting-time, audit, commissioning and recurrence data through contractual and information-standard arrangements.[18][13][21]
• Link registry records with pathology, diagnostic imaging, Hospital Episode Statistics, radiotherapy, systemic anti-cancer therapy, mortality, primary-care, screening, audit, patient-experience and end-of-life datasets, predominantly using the NHS number.[17][12][22]
• Migrate cancer registries to the English National Cancer Online Registration Environment, using standardised processes, central electronic-data processing and a unified national registration service with distributed registry delivery.[11]The programme planned migration of all registries by the end of 2012/13.[11]
• Introduce or expand key datasets, including the Systemic Anti-Cancer Therapies Dataset and diagnostic imaging dataset from April 2012, and the Cancer Outcomes and Services Dataset for mandated NHS use from January 2013, subject to standards approval.[13]
• Modernise cervical and breast screening information systems, drawing on the pathway-based Bowel Cancer Screening system model and developing a single national screening database linked to clinical and cancer data.[23]
• Integrate national clinical audits with cancer registration and routine data, pre-populate audit forms where possible, retain extra collection only where information is unavailable nationally, and review audits for value for money and duplication.[24]
• Publish profiles and accessible outputs for general practices, commissioners, providers, patients and the public, covering survival, treatment, waiting times, screening, referrals, stage, access, safety, patient experience, inequalities and radiotherapy performance.[25][26][20]
• Use routine and developing indicators, including one-year and five-year survival, mortality, stage, emergency-route diagnosis, patient-reported outcomes, length of stay, readmissions, patient experience and mortality after surgery, chemotherapy and radical radiotherapy.[5]
• Provide regular data-quality monitoring and feedback, including automated monitoring of data quality, workload and timeliness through ENCORE, monthly feedback to clinical teams after migration, and publication of incidence data within six months.[11][12]
• Support research through linked datasets, secure researcher-access arrangements and collaboration among registries, academic institutions, the National Cancer Research Institute and clinical teams, while applying stringent governance to sensitive personal data.[27][28]

Financially, the framework identifies cancer expenditure of approximately 6.3 billion pounds sterling annually and chemotherapy as a substantial cost area, estimated at around 1 billion pounds sterling each year within NHS cancer services.[3][9]It seeks efficiency through integrated national processing and reduced duplicate work, with removal of duplication estimated to reduce some registration activity by 10% from 2012/13.[12]Immediate agreed actions were described as funded, but no total implementation budget, detailed allocation, quantified funding gap or consolidated financing mechanism is specified.[29]

Monitoring & Evaluation

Cancer intelligence is envisaged as a national system for monitoring outcomes, service quality, inequalities, patient experience and the effects of improvement initiatives across prevention, diagnosis, treatment, survivorship and end-of-life care. It relies on linked clinical, administrative, registry, audit, survey, radiotherapy, chemotherapy, waiting-time and mortality data, with information intended to support service improvement, commissioning, regulation, research, patient choice and public accountability.[5][4][8][30]

• Measure outcomes through the National Health Service, Public Health and Social Care Outcomes Frameworks, including survival, mortality, stage at diagnosis, recovery, quality of life, patient experience and safety.[3][5]
• Track indicators including one-year and five-year survival, emergency presentation, stage 1 and 2 diagnosis, cancer mortality, treatment activity, readmissions, length of stay, day-case treatment, mortality after surgery, chemotherapy and radical radiotherapy, and patient-reported outcomes.[5][10][31]
• Use cancer registration, Office for National Statistics mortality linkage, Hospital Episode Statistics, clinical audits, radiotherapy data, systemic anti-cancer therapy records, patient-experience surveys and peer review to assess trends, pathways, outcomes and variation.[30][17][22]
• Compare services, geographical areas and population groups to identify inequalities, assess local and national initiatives, benchmark performance and support public scrutiny. General practice profiles are intended principally for clinical improvement rather than performance management.[5][4][25]

Data quality and completeness are central concerns. Identified weaknesses include incomplete and inconsistent information on staging, diagnostic access, chemotherapy, recurrence, metastatic disease, outpatient activity, survivorship, community and palliative care, expenditure, and screening pathways. Accurate staging was recorded for only 40% of cancer cases nationally, constraining assessment of earlier-diagnosis activity, survival comparisons and case-mix adjustment.[9][32]The framework sought accurate staging for more than 90% of stageable cases by the end of 2012.[12]

• Modernise registries through the English National Cancer Online Registration Environment, integrating pathology, multidisciplinary team, imaging, treatment, hospital, death-certification and other data to improve ascertainment, accuracy and timeliness.[11][12]
• Monitor data quality, workload and timeliness automatically, publish results regularly, provide monthly feedback to clinical teams after migration, and aim to report incidence within six months.[11][12]
• Introduce or extend datasets for systemic anti-cancer therapies, diagnostic imaging, cancer outcomes and services, screening, recurrence and metastatic disease, with mandated provider submissions where approved.[13][23][6]
• Develop national data-quality assurance arrangements with defined organisational roles, standards, incentives, dashboards and key performance indicators, including national assessments planned from the first half of 2012.[22]

Accountability is distributed across the Department of Health, Public Health England, the NHS Commissioning Board, the NHS Information Centre for Health and Social Care, cancer registries, the National Cancer Intelligence Network, the Office for National Statistics, providers, commissioners, regulators and audit bodies.[18][33][20]The National Cancer Intelligence Network is assigned publication roles for stage at presentation, emergency presentation, 30-day surgical mortality, cancer-type reports, and practice, commissioner and service profiles; the Office for National Statistics supplies incidence, survival and mortality statistics and monthly death data to registries.[20]

Reporting frequencies range from monthly feedback and routine registry outputs to quarterly, annual, ongoing and ad hoc publications.[11][34][31]Some monitoring outputs were available or developing, while others were partial, limited to pilot surveys, subject to approval, planned from 2012 or 2013, or yet to be confirmed.[5][34]Although the framework assigns many delivery and reporting responsibilities, it does not provide a single consolidated indicator target set, formal evaluation design or unified accountability timetable.[33][35][29]

Costing & Financing

The framework presents cancer intelligence as an efficiency and value-for-money programme, intended to reduce duplicate collection, improve the quality of expenditure information, coordinate analytical capacity and enable commissioners to direct resources towards high-quality, effective services.[1][35][15]Annual cancer expenditure is identified as approximately 6.3 billion pounds sterling, and chemotherapy is described as accounting for one fifth of the overall cancer budget.[3][36]

• Improve cancer-expenditure data through the 2010/11 Programme Budgeting collection, including commissioner price-paid data, classifications by care setting, strengthened guidance, improved mappings, training and validation.[35]
• Address inconsistencies in recording expenditure, including difficulty distinguishing prevention and health-promotion spending such as screening and human papillomavirus vaccination, and strengthen estimation of accident and emergency expenditure using diagnosis codes.[35]
• Record chemotherapy services as costing around 1 billion pounds sterling annually within National Health Service cancer services.[9]
• Seek efficiencies through a single national registration system and integrated processing, with removal of duplicated work estimated to reduce some registration activity by 10% from 2012/13 and release capacity for data quality and intelligence work.[11][12]

The Department of Health is identified as funding cancer registries, the National Cancer Intelligence Network, cancer services and national cancer audits.[18]Other identified support includes partial Cancer Research UK funding for National Cancer Intelligence Network analysis and research, partial Macmillan Cancer Support funding for work on late effects of treatment, and National Cancer Research Institute financial support routed to the Network.[10][7][37]The framework also describes immediate agreed actions as currently funded, while further improvements are to proceed when full funding is available.[29]

Resource requirements include investment in information technology, data-linkage infrastructure, secure researcher access, structured pathology and radiology reporting, electronic palliative-care coordination and improved survivorship information.[38][28]Planned financial mechanisms include development of a per-patient palliative-care tariff, while the Department of Health was expected to fund specified dataset development, including a diagnostics dataset.[7][37]Potential future support for the cancer patient-experience survey and survivorship patient-reported outcome measures survey was identified for consideration by the NHS Commissioning Board.[37]

No overall implementation budget, detailed allocation by activity, quantified funding gap, resource-mobilisation target or economic assumption is specified in the supplied material.[19][13][29]