Achievements and Outcomes

Transcription

1 Achievements and Outcomes Return to Contents 1

2 Contents Acknowledgements - 3 Executive Summary - 4 Chapter 1: Overview and Background - 13 Chapter 2: Cancer Data Requirements and Quality - 16 Chapter 3: Clinical Programme Overview - 28 Chapter 4: Quality Assurance - 30 Chapter 5: Cancer Waiting Times Standards - 34 Chapter 6: Tumour-Specific Pathway Groups - 40 Chapter 7: Cross-Cutting Pathway Groups - 89 Chapter 8: Patient Experience Chapter 9: Research and Innovation Chapter 10: Diagnostic Investigations Chapter 11: Workforce Chapter 12: Summary and Recommendations Chair's Reflections Contents London Cancer Alliance 2016

3 Acknowledgements I am very proud of what the London Cancer Alliance (LCA) has achieved since its establishment in Collaborative working is at the heart of this successful clinical programme, which is improving cancer outcomes and has reduced variation in access to cancer services. As a result, the LCA has built a strong reputation across London and nationally as a clinically driven model for transformational change, which has applicability not only for the rest of the UK but also for other NHS services and specialties. I am very grateful to everybody who has dedicated their time and expertise to the LCA, to our member organisations chief executives and the 4,000 clinicians that have contributed to all aspects of the LCA programme in leading and supporting clinical change across this complex system. This has been underpinned by the hard work and expertise of the LCA Programme Team, which has worked tirelessly to contribute to the success of the organisation. I would also like to acknowledge the expertise and significant contribution made by Dr Kate Haire, Mr Nick Hyde, Mrs Hilary Wilderspin, Mr Stephen Scott and our independent chair Dr Neil Goodwin, without whom this final report would not be possible. Claire Dowling LCA Programme Director Return to Contents Acknowledgements 3

4 Executive Summary This report provides an overview of the LCA s achievements since its establishment and makes recommendations for future improvements in cancer services across London. The report is intended to complement the report published by Public Health England (PHE) on London cancer intelligence in January 2016, which analyses the current cancer burden in the capital, comparing incidence and mortality rates with the national benchmarks. This report has focused on the use of informatics and demonstrates the importance of using robust, quality assured, evidenced-based data to support system-wide transformation. It also sets out a blueprint and guidance for the effective delivery of cancer informatics services in order to support emerging cancer delivery systems, both regionally and nationally. The report is divided into 12 chapters, each of which summarises through evidence-based informatics the key work outputs in the following areas: Overview and Background Cancer Data Requirements and Quality Clinical Programme Overview Quality Assurance Cancer Waiting Times Standards Tumour-Specific Pathway Groups Cross-Cutting Pathway Groups Patient Experience Research and Innovation Diagnostic Investigations Workforce Summary and Recommendations Each of these chapters identifies the priority work that needs to be undertaken in 2016/17 in order to maintain the momentum to improve cancer services and the experiences and outcomes of cancer patients. The full list of the 75 recommendations in this report is provided in the table at the end of the executive summary. It should be recognised that the recommendations in this report are drawn from the evidence base collated by the LCA over the past 4 years and as such they focus on cancer services in secondary and tertiary care. Important areas of work that have not been included in this set of recommendations include prevention, screening, early diagnosis and management of cancer as a long-term condition in primary care. The report concludes by discussing some of the key factors that have contributed to the effective delivery of a complex, wide ranging cancer transformation programme. These are grouped into four broad themes: Data requirements and quality Clinical programme Aligning with best practice and reducing unwarranted variation Systems leadership and collaborative working It is hoped that this report summarising the information and experience gained by the LCA over the past 4 years will be of use to the newly established cancer delivery systems as they establish and implement their clinical programme from April Executive Summary Return to Contents

5 Summary of Recommendations on Cancer Priorities 2016/17 Chapter 2 Cancer Data Requirements and Quality Recommendations 2016/17 1. Increase the focus on and resources for data quality improvement to achieve sustainable high quality data completeness for: all Cancer Outcomes and Services Dataset (COSD) data items Systemic Anti-Cancer Therapy (SACT) national audits national radiotherapy dataset (RTDS) (once available) 2. Ensure remote radiology feeds to the NCRAS are established at all providers. 3. Develop further the partnership with PHE, in view of: its custodianship of the cancer registration dataset and significant analytical resources; the recent reorganisation within PHE to establish the National Cancer Registration and Analysis Service (NCRAS), a PHE Cancer Board and the development of a PHE Cancer Strategy; and forthcoming publications of significant data analyses. 4. Establish a London-wide cancer informatics service to share analyses and undertake analyses once for all. Priority should be given to establishing a single host and location, which would be most appropriately located in PHE. Chapter 4 Quality Assurance Recommendations 2016/17 5. Ensure that there are sustainable systems and processes in place to demonstrate compliance with quality standards. 6. Prioritise improvement in data feeds to enable automated feeds for measurement of compliance metrics for LCA Clinical Guidelines. 7. Alignment of quality improvement work to ensure cohesion and coordination. This must ensure that: compliance metrics are aligned to the work of the NCRAS and NCIN; Improving Outcomes Guidance (IOG) compliance is aligned with the work of the Quality Surveillance Team (QST) (formerly National Peer Review Programme), which is the Integrated Quality Assurance Programme for cancer services; and there is collaborative work with NHSE Specialised Services on compliance of cancer services, with the national service specifications and joint work to address derogation issues. Return to Contents Executive Summary 5

6 Chapter 5 Cancer Waiting Times Standards Recommendations 2016/17 8. A focus is given to monitoring and analysing 62 day urgent GP referral to 1st treatment performance across LCA providers. This should be used to inform pathway improvements in order to work towards sustainable achievement of the standards across all sectors. 9. The Cancer Waiting Times analytical functions across London should include a data auditing function that compares data recording across providers. 10. Currently, commissioners and providers are duplicating analysis of Cancer Waiting Times. This is an inefficient use of resource, and priority should be given to developing a collaborative and coordinated approach to this function. Chapter 6 Tumour-Specific Pathway Groups: Brain/CNS cancer Recommendations 2016/ Skull base and pituitary audit findings will evidence an optimal service model for the management of rare skull base tumours. 12. Implement best practice A&E referral pathway. 13. Implement neuro-rehabilitation best practice checklist and monitor compliance. Chapter 6 Tumour-Specific Pathway Groups: Breast cancer Recommendations 2016/ Services focus on key metrics related to breast cancer surgery, to ensure that there is equity in access of patients to all options relating to breast cancer surgery. In particular, where there are low rates of immediate reconstructive surgery, provision of access to onco-plastic surgery at local Trusts should be reviewed. 15. Work should continue with the development and roll-out of the metastatic breast cancer service specification, including working with PHE to ensure that the COSD supports the requirements of metastatic breast cancer services. 6 Executive Summary Return to Contents

7 Chapter 6 Tumour-Specific Pathway Groups: Gynaecology cancer Recommendations 2016/ Providers improve rates of minimal access endometrial cancer surgery. As part of this work, the 80% aspirational standard should be reviewed to establish if this target is appropriate. This should be informed by the audit investigating the reasons behind patients not undergoing minimal access surgery. 17. As agreed at the LCA Clinical Board, Royal Marsden FT and St George s University Hospitals FT should undertake further work to evaluate the benefits of a single surgical site. Chapter 6 Tumour-Specific Pathway Groups: Haematology cancer Recommendations 2016/ St George s University Hospitals FT and Imperial College Healthcare NHS Trust should continue to work with NHSE Specialised Services on the configuration of bone marrow transplant (BMT) services. 19. Continue data improvement work, particularly focusing on completeness of cases submitted and stage being submitted in stageable cases. 20. Implement the work to establish neck lump diagnostic services in order to facilitate faster diagnosis and treatment, and the better use of resource. Chapter 6 Tumour-Specific Pathway Groups: Head and neck cancer Recommendations 2016/ Future organisations to take forward the work on surgical activity in order to inform decisions around configuration of surgical services. 22. Audit of time from surgery to radiotherapy should be repeated in order to identify if pathway has improved and if not, this should be a key focus going forward. 23. Develop and implement an action plan in order to improve performance against Cancer Waiting Times standard. Return to Contents Executive Summary 7

8 Chapter 6 Tumour-Specific Pathway Groups: Hepato-pancreato-biliary cancer Recommendations 2016/ Undertake further work in order to review the configuration of specialist surgical services, since a number of providers do not meet the minimum population catchment, nor activity levels, recommended by the Model of Care (MoC). 25. Ensure multidisciplinary team compliance with HPB peer review requirements at units. 26. Work to improve dietician access for patients with HPB cancers. Chapter 6 Tumour-Specific Pathway Groups: Lower GI cancer Recommendations 2016/ Minimal access surgery rates, along with the corresponding conversion rates, continue to be monitored across the LCA geography, and future work is undertaken to reduce variation. 28. Organisations focus on introducing straight to test models where these are not already in place. 29. Maintain and develop collaborative network approach to the management of locally advanced and locally recurrent rectal cancer. Chapter 6 Tumour-Specific Pathway Groups: Lung cancer Recommendations 2016/ Organisations focus on introducing straight to CT models where these are not already in place. 31. The LCA lung pathology quality standards should be monitored on an ongoing basis. 32. Review the updated surgical resection activity, including for mesothelioma. Chapter 6 Tumour-Specific Pathway Groups: Oesophago-gastric cancer Recommendations 2016/ Further work should be undertaken to review the configuration of specialist surgical services as a number of providers do not meet the minimum population catchment nor activity levels as recommended in the MoC/national recommendations. The oesophago-gastric stocktake will provide additional work priorities for 2016/ Implementation of standardised enhanced recovery programme at specialised centres. 35. Improved access to dieticians for oesophago-gastric cancer patients. 8 Executive Summary Return to Contents

9 Chapter 6 Tumour-Specific Pathway Groups: Skin cancer Recommendations 2016/ CCGs to use audit findings to ensure provisions of community dermatology services are compliant with NICE IOG Guidance (2010). 37. Secondary care and primary care to develop an education package for the recognition and appropriate referral of patients with suspected skin cancer. Chapter 6 Tumour-Specific Pathway Groups: Urology cancer Recommendations 2016/ Future organisation should take forward the work on optimal configuration of surgical services for specialised urology in order to comply with national recommendations. 39. Benchmarking compliance to be established for LCA Prostate Best Practice Pathway. 40. Renal activity thresholds should be reviewed if the Clinical Reference Group (CRG) publishes recommendations. Chapter 7 Cross-Cutting Pathway Groups: Acute oncology services Recommendations 2016/ Mandate routine and ongoing collection of data for neutropenic sepsis. 42. Acute oncology services to continue to work to improve the time to administer antibiotics following a patient presenting with neutropenic sepsis. 43. Mandate routine and ongoing collection of data against metastatic spinal cord compression (MSCC) audit template. 44. Annual MSCC audit and review of data to inform further service improvement work for MSCC services. 45. Appoint MSCC coordinator at Imperial College Healthcare NHS Trust. Return to Contents Executive Summary 9

10 Chapter 7 Cross-Cutting Pathway Groups: Chemotherapy closer to home Recommendations 2016/ Apply the learning from the pilots to implement innovative MoCs at scale across the cancer delivery systems, enabling more patients to benefit. 47. Promote the use of the financial modelling tool kit by new pilots. 48. Implementation of the LCA standardised education and training package for oncology pharmacists and chemotherapy nurses delivering SACT; the package is independent of care setting, and has the potential to be utilised by community pharmacists and primary care nurses in the future. Chapter 7 Cross-Cutting Pathway Groups: Radiotherapy Recommendations 2016/ Audit of the radiotherapy centre 62 day target performance at 1 year post-implementation of 62 day data recording standard. 50. Audit use of deep inspiratory breath hold (DIBH) for patients receiving left sided breast radiotherapy against agreed guidelines, including effect on waiting times and capacity. 51. Monitor compliance with stereotactic ablative radiotherapy (SABR) referral pathways for lung cancer patients. 52. Stereotactic Radiotherapy Services (SRS) provision for patients with brain/cns tumours and referral pathways across south and west London will be reviewed in 2016/17 to take account of the outcome of the NHSE tender for intracranial stereotactic radiosurgery and SRS. Chapter 7 Cross-Cutting Pathway Groups: Specialist palliative care Recommendations 2016/ The priority is to improve access to 24/7 services for people with life limiting illnesses. 24/7 telephone access is available with improvements needed in the provision of 24/7 face-to-face access. 54. Commissioners and providers should explore the resourcing of gaps in service provision and develop an action plan to provide 24/7 access. 55. All LCA specialist palliative care providers continue to work collaboratively with PHE to complete the national dataset. 56. Tumour-specific pathway groups to evaluate the deaths in hospital data in order to identify whether there is a need to undertake tumour-specific work on advance care planning, including the development of a prompts tool. 10 Executive Summary Return to Contents

11 Chapter 7 Cross-Cutting Pathway Groups: Survivorship Recommendations 2016/ Agree pan-london (both provider and commissioner) data definitions for all relevant data items, e.g. recovery package. 58. All Trusts to sign up to e-holistic Needs Assessment (HNA). 59. Embed treatment summary completion into Trust cancer data systems. 60. Embed treatment summary templates into electronic patient records (where Infoflex or Somerset are not in use). 61. System-wide agreement of how to collate HWBE attendance across all providers including hospice and third sector. 62. Implement developed pathways of care for consequences of treatment within established cancer pathways. 63. Ensure clinician agreed outcome datasets continue to be used to collate meaningful outcomes data in a routine and consistent manner. Chapter 8 Patient Experience Recommendations 2016/ Agree pan-london methodology for National Cancer Patient Experience (NCPE) analysis. 65. Review 2015 NCPE results once published (due summer 2016) and consider further tumour level analysis and comparison against: e-hna data; LCA metrics (both tumour-specific and cross-cutting); Future performance related outcome measures (PROMs) data; and emerging workforce data. Chapter 9 Research and Innovation Recommendations 2016/ Formation of a pan-london research group to include the LCA. 67. Expansion of the LCA Clinical Trials Directory to cover all of London, including the LCA. 68. Renewal of the 12 month LCA Biomedical Research Centre (BRC) research fellowship, and inclusion of 3-year PhD studentships available for clinicians, nurses and AHPs. 69. Continue interactions with contract research organisations, which will allow LCA investigators to be at the forefront of initiating new clinical trials. 70. Initiate a pan-london study in the topic of early diagnosis. Return to Contents Executive Summary 11

12 Chapter 10 Diagnostic Investigations Recommendations 2016/ Trusts and CCG leads work to reduce variation in access to diagnostic imaging: Evaluate variation in operating hours, activity and performance (waiting time and reporting time) in order to identify possible areas for efficiencies/increased productivity across cancer delivery systems. Work with CCGs to develop action plans for Sustainable Transformation Plan (STP) geographies in order to address the demand and capacity issues at a local level, recognising the need to identify and clear hidden backlog. Work with primary and secondary care to understand the factors contributing to low use of direct access for CT and MRI and develop robust action plans to improve uptake, access and operational efficiency. 72. Tumour-specific pathway groups prioritise work to reduce variation in quality of diagnostic imaging: Evaluate variation in performance including timeliness in access and reporting of imaging, and adopt best practice. Develop and implement agreed standardised protocol and reporting pro forma, taking account of relevant national guidance. Chapter 11 Workforce Recommendations 2016/ Consider the supportive care workforce in its totality, with the potential for AHPs to take on roles that may traditionally be nursing or reciprocal roles. 74. Ensure workforce reviewed by tumour group and Trust, and consider novel approaches to workforce gaps. 75. Utilise the evidence base on workforce to develop and implement robust and sustainable workforce plans within tumour groups, e.g. the development of the dietician business case. 12 Executive Summary Return to Contents

13 Chapter 1 Overview and Background Return to Contents Overview and Background 13

14 Introduction The London Cancer Alliance (LCA) was established in 2011 with the aim of improving outcomes and experience for patients, improving the quality of care and reducing variation in access to cancer services. The organisation has worked collaboratively with 17 NHS provider organisations, two academic health science networks and the voluntary sector in order to deliver safe and effective care across the integrated cancer system for south and west London. The LCA has demonstrated its strength by being an independent organisation, driving large-scale, system-wide transformational change through broad clinical consensus and generating change at a scale that individual organisations operating alone would find challenging to achieve. With the disestablishment of the LCA on 31 March 2016, this final report has been published in order to: summarise through evidence-based informatics the contribution the LCA cancer clinical programme has made to improving cancer outcomes and patient experience across south and west London; and make clear recommendations on cancer clinical priorities for future cancer delivery systems in 2016/17 and beyond, based on what we know today. What has changed in the cancer landscape since 2011? In 2011 supporting informatics and literature for the Model of Care were scarce. Over the last 5 years, the LCA has revolutionised the informatics landscape for the 5.7 million people it serves. Working in close partnership with the National Cancer Registry Service (NCRS), the LCA has delivered up to date, quality assured informatics reports and benchmarking, which identify unwarranted variation in access and quality across all cancer pathways. In January 2016, Public Health England (PHE) published a report that identified the current cancer burden on the capital, and compared incidence and mortality rates against the national benchmarks. Some of its key headlines included the following: The LCA has significantly lower age standardised incidence and mortality rates compared with the rest of England. This lower age standardisation plus a younger population results in a lower than expected incidence and mortality from cancer than would be expected if compared with the national population. Cancers of concern include increased incidence in head and neck, and higher mortality in liver, head and neck and uterine cancers. There has been a reduction in incidence in stomach, bladder and cervical cancers. The most common cancer diagnosis in men is prostate cancer, while in women it is breast cancer. For both men and women the most common cause of cancer death is lung cancer, which accounts for 22% of cancer deaths. The LCA has higher incidence compared with England of head and neck and uterine cancers. All other tumour types have rates in line with or lower than England rates. 14 Overview and Background Return to Contents

15 The LCA has higher mortality compared with England in the following tumour types: - Liver and intrahepatic bile ducts - Uterine cancer - Head and neck cancer - Lung cancer The LCA has lower incidence compared with England in the following tumour types: - Breast cancer - Cervical cancer - Colorectal cancer - Kidney cancer - Melanoma - Oesophageal cancer - Ovarian cancer The LCA has lower mortality compared with England in the following tumour types: - Bladder cancer - Colorectal cancer - Kidney cancer - Oesophageal cancer - Ovarian cancer - Prostate cancer - Lung cancer The headlines for the LCA are: London had 993 fewer cancer diagnoses per year than if the rates seen across England were applied to the LCA population; and London had 538 fewer cancer deaths per year than if the rates seen across England were applied to the LCA population. Throughout this report, the LCA highlights the significant contribution made by linking evidencebased informatics with the implementation and evaluation of system-wide change. Future cancer delivery systems should build on the LCA s achievements to date in order to ensure that the population of south and west London continues to benefit from its legacy. PHE undertook analysis comparing the cases of cancer, and deaths from cancer, with the rates seen across England. It then looked at how many excess cases and deaths were seen across London compared with the England rates. This is age standardised, so the younger population in London does not explain the differences. Return to Contents Overview and Background 15

16 Chapter 2 Cancer Data Requirements and Quality Blueprint for Change 16 Cancer Data Requirements and Quality Return to Contents

17 Overview High quality, accurate data on every case of cancer is critical to understanding this complex and widespread disease. Detailed and complete data collection on symptoms, how cancer is diagnosed, responses to treatment and the progression of disease over time is crucial in detecting cancer at an earlier stage and thereby improving outcomes. Increasing understanding of the molecular and genetic basis of the cancer that each individual has, and how that changes over time, is essential in order to meet the challenge of providing personalised medicine. In essence, each cancer is individual and to help each patient receive the right treatment detailed data collection is needed over a very large population base. The NHS in England is in the privileged position of having the National Cancer Registration and Analysis Service (NCRAS) previously the NCRS, a unique cancer data repository covering a large population, which can provide the data required to rise to this challenge. These data can be used to understand variations in cancer incidence, the equality of access to services and the effectiveness of treatments and outcomes. In addition, high quality data on treatments and interventions are a prerequisite to assessing the effectiveness of costly treatments and therapies, and understanding the economic cost of cancer. Context for the establishment of the LCA The National Cancer Intelligence Framework (December 2011) was drawn up in response to the Public Accounts Committee May 2011 report highlighting systemic deficiencies in the generation and use of cancer intelligence across the country. The Framework highlighted deficiencies in the coordination of data flows and the availability of cancer intelligence nationally in providing support to monitor progress of the national cancer strategy and plan (Improving Outcomes: A Strategy for Cancer, January 2011). It then set out a range of national commitments to address these deficiencies with the aim of delivering a world class cancer intelligence service to underpin the information needs of all stakeholders and help them play a more informed part in improving cancer outcomes. Three commitments included in the Framework remain crucial parts of the data collection and data quality improvement work required to deliver this vision. Implementation of the Cancer Outcomes and Services Dataset (COSD) dataset was mandated for all NHS providers from January COSD extended the mandated cancer data requirements of providers, in particular the collection of data items on specific cancer sites. COSD dataset implementation took place on a phased basis from 2013 to 2015: - January 2013 core and site-specific stage - July 2013 site-specific clinical - January 2014 site-specific pathology - January 2015 full COSD dataset in XML Implementation of the Systemic Anti-Cancer Therapy (SACT) dataset was mandated from April This dataset was designed to collect information on all drug treatments with an anticancer effect, in all treatment settings, including traditional cytotoxic chemotherapy and all newer agents. Implementation phases were as follows: - 1 April 2012 Start of mandatory collection from Trusts with e-prescribing systems - September 2012 Trusts without e-prescribing systems commence partial downloads - April 2014 all Trusts submitting full data Consolidation of eight regional English cancer registries into a new single NCRS within Public Health England (PHE) to harmonise the processing of multisource cancer data feeds across the country using a single system (ENCORE). This would enable the NCRS to deliver timely, consistent, national, high resolution and high quality data and intelligence. The transition of the London registry onto ENCORE was completed in October Return to Contents Cancer Data Requirements and Quality 17

18 The LCA informatics strategy The LCA was established in 2011 and the informatics strategy was developed within the context of major and radical changes in the national cancer informatics services and the new COSD data requirements. The LCA was set up 18 months prior to the start of the phased implementation of a new cancer dataset (COSD) containing 502 data items and at the beginning of a major restructuring of cancer registration services, data standards and data processing that was to last a further 18 months. It also rapidly became clear that the quality and timelines of the existing mandated cancer data feeds from LCA providers to the Thames Cancer Registry (TCR) was extremely poor. Of particular concern were the MDT and pathology feeds, but there were also no PAS feeds established at all. This situation applied to both cancer centres and cancer units. Data on the stage at which a cancer is diagnosed are critical to the understanding and analysis of cancer survival and outcomes. The % of cases with providers sending staging data from their MDT systems to TCR varied considerably across the LCA. At the end of December 2011 the % records with a valid stage being sent to TCR as an average across the three LCA sectors was: 3% NWL 9% SEL 24% SWL Within these averages, individual overall Trust performance varied from 0% to 35%. There was also considerable variation in performance between tumour sites and providers/ MDTs, for example: Breast % cases with staging data varied from 0% to 72% 1 Lung % cases with staging data varied from 0% to 91% Urology % cases with staging data varied from 0% to 76% These levels of staging were also significantly at variance from the levels that were required to meet the registry target of 70% of all cancers with a valid stage by the end of Given this situation, the LCA developed a cancer informatics strategy with four key objectives: Alignment with national policy to establish a single national cancer data repository and implementation of the new COSD dataset Improvement of cancer data quality and timeliness Using existing data sources to develop LCA-wide and pathway-specific comparative metrics and to deliver metrics required by commissioners Avoiding the development of LCA-only data feeds, definitions and tools in isolation from the national data repository, national data definitions, expertise and resource As time went on, the LCA informatics team was able to develop further services for LCA providers: Trust-specific cancer comparative scorecards HES analyses to support specific issues, e.g. treatment rates Support for the Model of Care responses, particularly in respect of surgical reconfiguration More granular analysis of available datasets such as cancer waiting times and as further datasets became available, e.g. SACT, NCPES, 1 year survival Expansion of data quality monitoring beyond staging data performance to other marker COSD and SACT data items 1 Both breast and lung cancers were already subject to well-established national audits and so data collection by clinical teams should have already been widespread. 18 Cancer Data Requirements and Quality Return to Contents

19 Data quality improvement: progress to date Staging data The initial data quality improvement focus for the LCA was on the submission of staging data in the Trust MDT data feed to the cancer registry (Level 2 reports). While significant progress has been made from the 2011 position across all providers and tumour types, it is of concern that many providers have experienced a drop in performance during While a national comparison of the MDT staging data completeness (Level 2) in 2014 showed the LCA to be the best performing area in England (see Figure 1), this is not the situation in Figure 1. National comparison of staging completeness by sector in 2014 Number Number % of cases Number with full stageable Area diagnosis stageable stage fully staged London Cancer Alliance* % Merseyside and Cheshire % London Cancer % Greater Manchester, Lancashire & South Cumbria % Wessex % South West % South East Coast % Yorkshire And The Humber % East of England % West Midlands % East Midlands % North East, North Cumbria, and North Yorks % Thames Valley % England Overall % *Note: East and North Hertfordshire NHS Trust included in East of England not London Cancer Alliance. The most recent data for 2015 show that the improvements made during the period have not been sustained at many LCA providers. The headlines from the 2015 position (at 7 February 2016) are as follows: Imperial had the highest % staging completeness of stageable cancers (79%) in the LCA in Only five LCA Trusts were above 70% in 2015 for staging % completeness (Imperial, St George s, Kingston, Hillingdon and Royal Brompton & Harefield). Staging % completeness has dropped from 68% (2014) to 64% (2015). Return to Contents Cancer Data Requirements and Quality 19

20 Figure 2. National comparison of staging completeness by sector in 2015 (data received up to 7 February 2016) Number Number % of cases Number with full stageable Area diagnosis stageable stage fully staged Merseyside & Cheshire 18,880 16,673 11, % Greater Manchester, Lancashire & South Cumbria 35,433 32,002 20, % London Cancer Alliance* 25,170 21,734 13, % Wessex 20,651 18,383 10, % London Cancer 17,967 15,797 8, % South West 53,052 46,306 23, % South East Coast 35,868 32,808 15, % East of England 46,914 41,603 18, % North East, North Cumbria and North Yorkshire 28,405 24,657 10, % Yorkshire and the Humber 46,415 40,394 17, % West Midlands 38,553 33,873 14, % East Midlands 25,052 22,254 8, % Thames Valley 13,824 12,933 3, % England overall 406, , , % *Note: East and North Hertfordshire NHS Trust included in East of England not London Cancer Alliance. Across the LCA, tumour level staging completeness varies significantly, from 80% staging completeness for lung cancers, and only 8% completeness for sarcomas. This is illustrated below. Figure 3. % of stageable tumours where staging is provided in MDT feed submitted to cancer registry (LCA (exc. E&N Herts)) by tumour type, 2015 Lung Head and Neck (exluding thyroid) Oesophago-gastric Pancreatic Gynaecology Breast Cancer Melanoma Lower GI Endocrine (Thyroid, Parathyroid, Adrenal and Paraganglia) Non-Melanoma skin cancer Urology (exc. Prostate) Prostate Hepatobiliary and Gall Bladder Haematology (stageable) Cardiothoracic (exc. lung) % sstaged Sarcoma % not staged 80% 74% 73% 68% 68% 67% 66% 65% 63% 62% 60% 56% 55% 51% 31% 8% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% There is also significant variation in provider percentage completeness. For example even though staging completeness is relatively good for lung at Trust level, staging completeness varies from 98% at The Hillingdon Hospitals NHS Foundation Trust to only 14% at London North West Healthcare NHS Trust. 20 Cancer Data Requirements and Quality Return to Contents

21 Performance status Following on from the focus on staging data completeness, the LCA started comparative reporting on a number of other key COSD data items; basis of diagnosis, performance status, numbers of cases submitted by MDT and patients seen by CNS. While this wider focus has led to improvement, even with these few additional data items the percentage completeness remains poor. Performance status is a key data item that is used in understanding cancer outcomes as it takes account of patient co-morbidities and the impact on cancer treatment and outcomes. Of particular interest to Trusts will be the importance of being able to account for performance status when interpreting tumour-specific 1 year survival data. Data for 2015 received up to 7 February 2016 showed that overall performance status completeness across the LCA is only 54%. This compares with 51% across the whole of England. The graph below shows the comparative performance across the LCA. The headlines are: Imperial has highest % performance status completeness in LCA in 2015 (90%). Only three LCA providers are above 70% in 2015 for performance status (Imperial, London North West and The Royal Marsden). Performance status has improved from 31% (2013) to 54% (2015). Figure 4. Proportion of patients discussed at MDT where performance status is provided for invasive cancers ( , London Cancer Alliance Trust) 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% % 4% 50% 55% 0% 23% 1% 32% 43% 8% 32% 16% 16% 1% 0% 31% % 6% 69% 69% 37% 14% 3% 73% 51% 18% 40% 24% 58% 7% 3% 50% 2015 (received up 7th February 2016) 90% Imperial College Healthcare NHS Trust 74% St Georges University Hospitals NHS Foundation Trust 72% Kingston Hospital NHS Foundation Trust 69% The Hillingdon Hospitals NHS Foundation Trust 63% Royal Brompton & Harefield NHS Foundation Trust 56% Guys and St Thomas NHS Foundation Trust 54% Croydon Health Services NHS Trust 48% West Middlesex University Hospital NHS Trust 43% The Royal Marsden NHS Foundation Trust 39% Epsom and St Helier University Hospitals NHS Trust 33% Kings College Hospital NHS Foundation Trust 29% London North West Healthcare NHS Trust 20% Lewisham and Greenwich Healthcare NHS Trust 18% Chelsea and Westminster Hospital NHS Foundation Trust 3% East and North Hertordshire NHS Trust 54% LCA overall Return to Contents Cancer Data Requirements and Quality 21

22 SACT data Complete capture of the 42 items in the SACT dataset relies heavily on the availability of a Trust e-prescribing system. As the implementation of e-prescribing across the LCA has been slow, this has meant that both the total volume of regimens being recorded and the completeness of the data capture of the dataset for each patient have taken time to improve. The LCA provided support for providers through a SACT user group as well as the provision of comparative reporting, including data on post-chemotherapy SACT mortality at 30, 60 and 90 days. With the imminent publication of SACT mortality data, accurate capture of treatment intent and the completeness of treatment cycles is critical to the accurate representation of any provider s outcomes. Significant improvement has been made as illustrated in the following graphs. The headlines are: Regimen volumes submitted have increased from 13,543 in 2012 to 33,040 in 2015, and have been at this latter level for a period of time, suggesting that the count of regimens delivered is highly accurate. Treatment intent (curative or palliative) has improved from 50% completeness to 88% in Performance status completeness has improved from 15% to 74% in Figure 5. Numbers of regimens submitted across the LCA during ,000 30,000 25,000 20,000 15,000 10,000 13,543 27,149 30,567 33,040 5, (projected based on Jan - Sept data) 22 Cancer Data Requirements and Quality Return to Contents

23 Figure 6. SACT dataset completeness: treatment intent ( )* Chelsea and Westminster Hospital NHS Foundation Trust 88% 98% 100% 100% Croydon Health Services NHS Trust 0% 81% 100% 100% East and North Hertfordshire NHS Trust 97% 96% 98% 100% Epsom and St Helier University Hospitals NHS Trust 0% 0% 0% 28% Guy s and St Thomas NHS Foundation Trust 85% 82% 91% 86% Imperial College Healthcare NHS Trust 33% 98% 100% 99% King s College Hospital NHS Foundation Trust 1% 14% 65% 90% Kingston Hospital NHS Foundation Trust 100% 100% 96% Lewisham and Greenwich NHS Trust 34% 24% 60% 94% London North West Healthcare NHS Trust 1% 10% 79% 100% St George s University Hospitals NHS Foundation Trust 69% 100% 100% 100% The Hillingdon Hospitals NHS Foundation Trust 0% 0% 9% 98% The Royal Marsden NHS Foundation Trust 0% 0% 28% 80% London Cancer Alliance Overall 50% 43% 65% 88% *Rag rating used: Green 70% +, Yellow 20 70%, Red <20% complete Figure 7. SACT dataset completeness: performance status ( )* Chelsea and Westminster Hospital NHS Foundation Trust 31% 64% 85% 92% Croydon Health Services NHS Trust 0% 69% 100% 33% East and North Hertfordshire NHS Trust 83% 49% 61% 97% Epsom and St Helier University Hospitals NHS Trust 0% 0% 0% 28% Guy s and St Thomas NHS Foundation Trust 11% 51% 78% 77% Imperial College Healthcare NHS Trust 67% 64% 46% 61% King s College Hospital NHS Foundation Trust 0% 2% 7% 17% Kingston Hospital NHS Foundation Trust 94% 98% 90% Lewisham and Greenwich NHS Trust 0% 0% 32% 56% London North West Healthcare NHS Trust 1% 8% 67% 36% St George s University Hospitals NHS Foundation Trust 43% 67% 89% 96% The Hillingdon Hospitals NHS Foundation Trust 0% 0% 9% 98% The Royal Marsden NHS Foundation Trust 0% 12% 43% 77% London Cancer Alliance Overall 15% 31% 54% 74% *Rag rating used: Green 70% +, Yellow 20 70%, Red <20% complete Return to Contents Cancer Data Requirements and Quality 23

24 There are concerns, however, that there are still issues in using the dataset that need to be resolved. Foremost among these are: capturing the granularity of the hospital site where the chemotherapy was delivered as opposed to the overall Trust name. This is critical to being able to analyse the geographical delivery of chemotherapy services in the context of chemotherapy closer to home. accurate capture of the route of delivery, e.g. IV or oral, where there still appears to be wide variation between providers. It is not clear as yet if this is real variation or a data quality issue. National audits With the move to the NCRAS for the data collection for the prostate and lung national audits, the LCA has been able to provide comparative data completeness reports for its providers. These indicate that, again, while significant improvement has been made, there is still much more progress required before data are sufficiently complete for valid comparison to be made. Indeed, there are two LCA providers still submitting no data to the national prostate audit in Figure 8. Data quality report for LCA providers - National Cancer Prostate Audit 2015 East and North Hertordshire NHS Trust West Middlesex University Hospital NHS Trust The Hillingdon Hospitals NHS Foundation Trust London North West Healthcare NHS Trust Imperial College Healthcare NHS Trust Chelsea and Westminster Hospital NHS Foundation Trust The Royal Marsden NHS Foundation Trust St Georges University Hospital NHS Foundation Trust Kingston Hospital NHS Foundation Trust Epsom and St Helier University Hospitals NHS Trust Croydon Health Services NHS Trust Lewisham and Greenwich Healthcare NHS Trust Kings College Hospital NHS Foundation Trust Guys and St Thomas NHS Foundation Trust Number of cases submitted NHS Number 100% 99% 100% 99% 100% 100% 99% 100% 100% 100% 100% 100% 7. Organisation code (code of provider) 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 8. Multidisciplinary team discussion date 96% 0% 80% 89% 90% 57% 91% 29% 96% 98% 94% 25% 9. Consultant code (first seen) 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 10. Date of diagnosis (clinically agreed) 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 11. Symptoms prior to diagnosis 40% 0% 0% 68% 90% 0% 5% 17% 0% 41% 26% 0% 12. Performance status (Adult) 67% 2% 2% 9% 82% 75% 26% 14% 68% 94% 50% 5% 13. ASA score (prostate) 64% 1% 4% 8% 90% 0% 12% 0% 4% 82% 22% 0% 14. Source of referral for out-patients 71% 99% 90% 94% 100% 84% 97% 100% 100% 97% 100% 99% 15. PSA (diagnosis) 82% 85% 71% 60% 60% 13% 85% 52% 54% 89% 86% 55% 16. Prostate biopsy technique 83% 0% 92% 72% 90% 13% 5% 19% 4% 82% 31% 0% 17. Gleason grade (Primary) 85% 91% 5% 72% 30% 0% 96% 12% 78% 80% 81% 27% 18. Gleason grade (Secondary) 82% 91% 0% 72% 30% 0% 96% 10% 78% 79% 81% 27% 19. Gleason grade (Tertiary)* 12% 0% 0% 0% 1% 0% 0% 0% 0% 0% 14% 22% 20. Multiparametric MRI performed 77% 0% 86% 72% 90% 13% 5% 17% 3% 82% 29% 0% 21. T category (final pre-treatment) 86% 1% 70% 54% 83% 84% 82% 10% 79% 99% 81% 1% 22. N category (final pre-treatment) 79% 1% 70% 53% 80% 83% 69% 10% 72% 98% 77% 1% 23. M category (final pre-treatment) 80% 1% 70% 52% 81% 83% 62% 10% 71% 98% 77% 1% 24. Perineural invasion 73% 0% 73% 69% 16% 0% 66% 10% 10% 9% 70% 24% 25. Number of positive cores 68% 0% 89% 70% 77% 4% 92% 17% 10% 5% 69% 0% 26. Total number of cores 68% 0% 89% 70% 77% 4% 92% 19% 10% 7% 69% 0% 27. Greatest percentage of cancer in single most involved core 34% 0% 87% 64% 76% 4% 90% 17% 9% 0% 32% 0% 28. Specialist referral apointments 84% 0% 79% 67% 88% 13% 0% 14% 4% 82% 8% 0% 29. Planned prostate cancer treatment as agreed with patient 82% 0% 72% 60% 72% 3% 93% 10% 46% 74% 36% 9% Source: Prostate Audit Cancer Data Requirements and Quality Return to Contents

25 Remote radiology access Over the past 2 years, it has been one of the LCA s priorities to establish remote radiology access for the NCRS from provider radiology systems. Increasingly, cancer is being diagnosed and staged via imaging, and improving the accuracy of data available to the NCRS will assist in providing the service with accurate stage at diagnosis and survival data. Progress has been made and access established across the hospital sites of seven LCA providers. However, there is still no link established at Chelsea and Westminster, Epsom and St Helier (both sites), Lewisham and Greenwich (both QEH and UHL), Royal Brompton & Harefield, LNWH (including LNWH sites and Ealing separately) and Croydon. Data collection for Holistic Needs Assessment The LCA has been at the forefront of data collection for various elements of the recovery package, including completion of Holistic Need Assessments (HNA), treatment summaries and attendance at health and wellbeing events. The LCA was also prominent in lobbying for inclusion of HNA in the most recent revision of the COSD dataset. The analysis of the data collected is set out in chapter 7 of this report. Priorities going forward Data quality improvement While there has been considerable progress made in the quality of COSD data submissions from providers to the NCRAS, the overall completeness of data submissions is still relatively poor and the pace of implementation of all phases of COSD implementation has varied significantly in London and across England. In order to continue to build on the data quality improvement achieved to date, there needs to be increased focus on the % completeness of all the key COSD data items, particularly the site-specific items, which will be critical to the assessment of best practice pathway compliance and pathway level costing in the future. SACT data also require continued monitoring and feedback in order to improve and sustain the completeness of the dataset. When RTDS data starts to be fed directly through to the NCRS from April 2016, there will be the opportunity to start to monitor and feed back comparative data quality on this dataset to London providers for the first time. It is critical that there continues to be a data quality element to pan-london cancer informatics reporting and feedback to providers and clinical teams. This requires ongoing partnership working and engagement with the PHE data quality improvement team and potentially increased resourcing of this work pan-london. Partnership with Public Health England While the establishment of a single cancer registration service within PHE has been achieved, and registration processes are timelier, the NCRS still has further work to do to establish data linkage across all cancer datasets and increase access to those datasets, for example, linking the COSD to the SACT datasets. Changes in the organisation of and personnel in the London Knowledge and Intelligence team (part of PHE) over recent months have significantly improved the volume, timeliness and relevance of cancer analytics feedback to London stakeholders. However, there still remain issues in respect of the relevance of national analyses to the needs of local teams and the clinical community, the quality assurance of data releases, and the ease and speed with which analyses are undertaken at the local level. Return to Contents Cancer Data Requirements and Quality 25

26 More recent reorganisation has taken place, which has seen Public Health England combine the NCRS with the National Cancer Intelligence Network (NCIN) to create a single new function: PHE s National Cancer Registration and Analysis Service (NCRAS), under the leadership of Dr Jem Rashbass. This service is responsible for collecting, analysing and providing the data to support all patients diagnosed with cancer in England, and effectively re-combines the data collection and analyses functions for cancer that were separated on the creation of PHE. The new service replaces the NCIN. These developments establish within PHE a national repository of patient-level cancer data, fully compliant with the new COSD requirements, which will become the definitive source for national and local cancer analyses. This will provide the core of both national and local cancer intelligence needs, for example, support for pathway metrics mapping and stage distribution analyses in order to inform investigation of late stage presentations. Public Health England is establishing a PHE Cancer Board chaired by Duncan Selbie, which will work with the Cancer Transformation Board and Cancer Advisory Board established in response to the Independent Cancer Taskforce review. This Board has been charged with the development of a PHE Cancer Strategy. PHE is also reviewing the cancer site-specific clinical reference groups and relationships with similar groups in NHSE, NCRI and NICE. Given PHE s custodianship of the national cancer data repository and its significant cancer analytical resource, it is essential that London stakeholders develop even greater partnership working with the PHE London team than has been established to date. This includes work on data quality improvement as set out above. There are a number of significant data analyses due for release in the next 6 months, and it will be crucial for joint working between PHE and all London stakeholders to establish the London-wide position. This will include the following: year survival, which will provide access to data on smaller volume cancers London-wide analysis of the routes to diagnosis dataset SACT provider level mortality for breast and lung patients Establishment of a London-wide cancer informatics service Since April 2013, significant changes in organisations, structures and processes have resulted in the reduction, dissipation and fragmentation of cancer analytical expertise and resource in order to support NHS providers, commissioners, researchers and the third sector. The introduction of new cancer datasets (COSD, SACT), the creation of the NCRAS and the transition of cancer registration and analysis to PHE has both enhanced the potential uses and importance of cancer data to improve outcomes, but also requires a coordinated approach to maximise these benefits for providers and commissioners. The dissipation of resources and the complexity of relationships between organisations have resulted in lack of data sharing and the duplication of data analyses. This has meant that a range of organisations have analysed the same data in different ways and hence often reached different conclusions. This duplication of effort and resource does not represent good value for money. 26 Cancer Data Requirements and Quality Return to Contents