An Intelligence Framework for Cancer

Objectives

Establish a world-class cancer intelligence system for England that provides credible, comparable, confidential, clear and compelling information to improve cancer outcomes, quality of care, patient experience, equality, productivity and informed choice.[1][2][3]The framework supports the Government’s ambition to save an additional 5,000 lives by 2014/15.[1][4]

• Improve intelligence across prevention, screening, early diagnosis, diagnosis, treatment, recurrence, survivorship, palliative and end-of-life care.[5][6]
• Strengthen information on incidence, prevalence, stage at diagnosis, survival, mortality, service provision, expenditure, outcomes and inequalities.[7][8]
• Develop integrated information on screening and symptomatic pathways, primary-care diagnostic testing, chemotherapy, radiotherapy, pathology, imaging and cancer recurrence.[2][6][9]
• Enable patients, clinicians, providers, commissioners, regulators, local government, public-health bodies, researchers and the public to use cancer intelligence for decision-making and service improvement.[1][5][10]
• Reduce duplication and provider burden by collecting data through routine clinical care and reusing information for planning, commissioning, audit, research and public accountability.[3][11][12]
• Support relevant Public Health, National Health Service and social care outcomes frameworks, including measurement of survival, earlier diagnosis, patient-reported outcomes, treatment safety and value for money.[3][5]

Implementation

Deliver the strategy through a coordinated national cancer intelligence programme, centred on the National Cancer Intelligence Network and modernised cancer registration, which links routinely collected clinical, administrative, audit and patient-reported data into accessible intelligence products.[13][14][15]Implementation combines national standards and mandated provider submissions with partnership working, secure data linkage, feedback to services, public reporting and targeted development of datasets and analytical tools.[11][10][16]

• Establish a unified cancer registration service for England, using standardised methods, central management and the English National Cancer Online Registration Environment, with registries operating as a managed distributed network.[15]
• Integrate pathology, multidisciplinary team, diagnostic imaging, waiting-times, hospital, radiotherapy, chemotherapy, death certification and population-movement data through the national registration service and related repositories.[17]
• Require National Health Service and independent-sector providers delivering National Health Service services to collect and submit approved data through the National Health Service Information Standard and National Health Service Standard Contract.[11]
• Implement interoperable datasets so that information is captured once through existing information-technology systems, linked through cancer registration and reused across national data returns.[11]
• Introduce the Systemic Anti-Cancer Therapies Dataset and diagnostic imaging dataset from April 2012, and make the Cancer Outcomes and Services Dataset mandatory across the National Health Service from January 2013, subject to standards approval.[11]
• Modernise screening information systems by developing national databases, using the National Health Service number as the key identifier, integrating screening and cancer data, and improving interoperability with hospital services.[18][6]
• Coordinate responsibilities across the Department of Health, Public Health England, the National Health Service Commissioning Board, cancer registries, the National Cancer Intelligence Network, the Office for National Statistics, the National Health Service Information Centre for Health and Social Care, providers, commissioners, regulators, charities and research organisations.[7][19][20]
• Use Public Health England, including registries and the National Cancer Intelligence Network, to provide intelligence support for local government, health and wellbeing boards, Joint Strategic Needs Assessments and local health and wellbeing strategies.[21][22]
• Link data predominantly through the National Health Service number, under permissions supported by Section 251 of the National Health Service Act 2006, while maintaining lawful, ethical and secure use of patient information.[14][20]
• Develop secure approved-research access, including a proposed safe haven based on the United Kingdom Data Archive model, to enable research while protecting sensitive personal data.[23]
• Provide commissioner, general practice and provider profiles, national analyses, service profiles and public information products to support benchmarking, patient choice, scrutiny and local action.[24][25]
• Feed timely information back to clinical teams, providers and data submitters through dashboards, quality-assurance processes, audit findings and registry feedback to improve both care and data recording.[19][26]
• Monitor performance through cancer registration, linked mortality data, national audits, patient experience surveys, radiotherapy and chemotherapy datasets, waiting-times monitoring and peer review.[27][8][14]
• Track stage at diagnosis, emergency presentation, survival, mortality, treatment outcomes, 30-day post-treatment mortality, inequalities, patient experience, activity, productivity and service access.[5][9][21]
• Publish national, commissioner-level and service-level reports, including annual cancer reports and intelligence on stage at diagnosis, emergency presentation and 30-day mortality after cancer surgery.[25][16]
• Improve efficiency by using routine data, pre-populating audit forms, reducing duplicated registration activity and limiting additional collection to essential information.[15][12]
• Implement immediate actions that are agreed with stakeholders and currently funded, while making further developments conditional on available capacity and full funding.[16]

Monitoring & Evaluation

Cancer intelligence is intended to provide a coordinated, quality-assured basis for monitoring outcomes, service performance, inequalities, patient experience and progress against national cancer objectives.[1][5][25]

• Align measurement with the Public Health Outcomes Framework, all five domains of the NHS Outcomes Framework, commissioner and provider incentive programmes, and the NHS Commissioning Board Mandate.[3][5][28]
• Monitor incidence, prevalence, survival, mortality, stage at diagnosis, emergency presentation, waiting times, treatment activity, service need, inequalities, productivity and value for money.[4][8][9]
• Track patient-centred outcomes including patient-reported outcomes, recovery, readmissions, return to work, patient experience, survivorship, end-of-life care and mortality following surgery, chemotherapy and radical radiotherapy.[5][29]
• Use specific early-diagnosis proxy indicators, including stage 1 and 2 diagnosis rates, emergency-diagnosis rates and general practitioner use of diagnostic tests.[9]
• Target accurate staging for over 90% of stageable cancers by the end of 2012 and provide stage information as a proxy for one-year survival by the second quarter of 2013.[17]
• Improve registry timeliness from 15 months for 2009 registrations and 12 months for 2010 registrations towards incidence reporting within six months, supported by monthly feedback to clinical teams.[17]
• Monitor registry quality, workload and timeliness continuously through the English National Cancer Online Registration Environment, with regular publication of results.[15]
• Use cancer registration, linked death certification, Hospital Episode Statistics, waiting-time data, radiotherapy and chemotherapy datasets, national clinical audits, patient experience surveys and peer review to support surveillance and oversight.[19][8][14]
• Assess service quality through analyses of Trust service provision, multidisciplinary team composition, clinical nurse specialist access, equality-group variation, waiting-time and peer-review compliance, resection rates and 30-day mortality.[7]
• Report information through national and commissioner-level publications, annual cancer reports, profiles for general practices, commissioners and providers, and routine emergency-presentation reporting.[14][9][25]
• Publish transparent and disaggregated equality information, including through the Equalities Portal where technically possible, to enable public scrutiny of service quality and inequalities.[7][30]
• Use dashboards, key performance indicators, quality-assurance frameworks, feedback to providers and national summary reports to identify data-quality problems and support improvement.[26]
• Support accountability through contractual provider data-submission requirements, approved information standards, secure linkage, national repositories, clinical audits and regulatory use of cancer information.[11][25]
• Evaluate initiatives through linked datasets, research, peer-reviewed publication and comparisons of screen-detected and symptomatic outcomes.[4][18][22]

A single consolidated indicator set, formal evaluation methodology and universal reporting timetable are not specified; however, the framework assigns several outputs annual, quarterly, monthly, ad hoc or implementation-specific reporting dates.[31][25][32][33]

Costing & Financing

The framework emphasises better use of existing resources, improved expenditure intelligence and reduction of duplicative data collection, but does not provide a consolidated implementation budget, quantified funding gap or full economic case.[3][34][16]

• Recognise annual cancer-service expenditure of around 6.3 billion Pound sterling, with chemotherapy accounting for a fifth of the overall cancer budget.[31][3]
• Recognise annual chemotherapy-service expenditure of around 1 billion Pound sterling within National Health Service cancer services.[6]
• Improve productivity by reusing data collected for clinical care and essential administration, streamlining audit collection, pre-populating forms and reducing duplicate submissions.[3][12]
• Reduce some cancer-registration activity by an estimated 10% from 2012/13 through integrated national processing and removal of duplicated work.[15]
• Improve expenditure estimates through enhanced Programme Budgeting guidance, care-setting breakdowns, validation and training, including more accurate attribution of accident and emergency expenditure.[34]
• Support cancer registries, the National Cancer Intelligence Network, cancer services, national audits, datasets, surveys and related statistics through Department of Health funding and commissioning arrangements.[19][28]
• Mobilise support from Cancer Research UK, Macmillan Cancer Support, cancer charities, National Cancer Research Institute funders and the Healthcare Quality Improvement Partnership for specified intelligence, research and audit activity.[20][9][29][35]
• Develop a per-patient palliative care tariff, informed by improved end-of-life-care data and work following the Palliative Care Funding Review.[30]
• Consider future NHS Commissioning Board funding for the cancer patient experience survey and survivorship Patient-Reported Outcome Measures survey.[28]
• Condition further information-system and intelligence development on available resources and full funding, while recognising limited intelligence capacity and a need for investment in survivorship information technology.[16][36]

No dedicated budget, funding allocation, quantified resource requirement, funding gap or economic assumption is specified for most planned datasets, screening-system changes, data-quality interventions or reporting activities.[18][26][16]