NHS Digital Data Release Register - reformatted
Project 1 — DARS-NIC-69707-G0Q7Z
Opt outs honoured: No - data flow is not identifiable
Sensitive: Non Sensitive
When: 2016/12 — 2019/01.
Repeats: One-Off, Ongoing, System access, System Access
Legal basis: Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)
Categories: Anonymised - ICO code compliant
- Bespoke Monthly Extract : SUS PbR A&E
- Bespoke Monthly Extract : SUS PbR APC Episodes
- Bespoke Monthly Extract : SUS PbR OP
- Bespoke Monthly Extract : SUS PbR APC Spells
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Outpatients
- Bespoke Extract : SUS PbR A&E
- Bespoke Extract : SUS PbR APC Episodes
- Bespoke Extract : SUS PbR APC Spells
- Bespoke Extract : SUS PbR OP
- Hospital Episode Statistics Critical Care
Purpose - Overall Context The National Cancer Vanguard covers three systems: • Greater Manchester (led by The Christie NHS Foundation Trust) • North West and South West London (led by The Royal Marsden NHSFT) • West Essex, North Central and North East London (led by University College London Hospitals NHS Foundation Trust) Note that the University College London Hospitals NHS Foundation Trust will not be permitted to access any data under this agreement. The vanguard has been tasked with radically restructuring cancer care systems to place the patient at the heart of service planning and delivery. The case for change has been clearly highlighted in the NHS Five Year Forward View, through the three gaps, namely: • Health and Wellbeing Gap – 1 in 2 people will get cancer in their lifetime. The incidence of cancer is increasing by about 2% per year and is the biggest cause of death from any disease in every age group. The shift in lifestyle in increasing the age standardised risk of cancer. • Care and Quality Gap – cancer patients are diagnosed too late, survival is poor, cancer is not prevented where it can be and living with and beyond cancer is not consistently prioritised. Patients receive inconsistent quality of care, long waiting times, widely varying outcomes and often poor experience. • Funding Gap – the cost of delivering the capacity required to bring forward diagnosis and shift follow up care into the community and other settings is currently prohibitive. To tackle these gaps, the vanguard has a programme of works which fall under three categories: • Transforming the clinical model of delivery refocusing funding across cancer pathways away from costly specialist treatment of late stage cancers to prevention and diagnosis and reducing unwarranted variation – consistently applying best evidence based practice including access to 24/7 end of life and palliative care and supporting patients living with and beyond cancer; • Changing the system architecture by: - creating sector-wide single cancer budgets and lead provider models within the context of a system leader, underpinned by financial incentives that transform cancer care; - developing robust governance models, supported by appropriate organisational form, that drive shared accountability across system; and - working with commissioner colleagues to radically reform and strengthen commissioning processes in order to streamline accountabilities and drive forward service improvement. • Implementing enabling infrastructure to include outcomes measurement and shared reporting co-created with patients / carers and clinicians supported by shared MDT level balanced scorecards, data capture standards, and analytical capabilities to drive best practice evidence based decision making and outcomes commissioning. Purpose - Specific work streams requiring data from NHS Digital Through the programme of works noted above, there are three key purposes of why data is needed, which fall under two main work streams: 1) Creation of new commissioning model for cancer services (changing system architecture) [SUS data] a) Scoping analytics: When determining the population cohort (demographics, location, disease type) and pathways that will be covered by a new payments model we will need to perform comprehensive analysis to understand the current population and existing pathways. b) Model building: Once we have decided on a payment mechanism and the patient cohort and pathways covered by the new commissioning model, we will need to build a financial and activity model. This will need to project the impact of the new commissioning model by the various organisations impacted, and be able to calculate payments. This model would also be used to form the basis of contracts over a multiple year period. 2) To perform pan-vanguard data analytics to aid decision making (implementing enabling infrastructure) [HES data via HDIS] a) Performance reports: This will include production of comparable metrics the Vanguard providers of cancer care including NHS Providers and CCGs. The aim of these comparable analyses will be identify areas for improvement overall within the Vanguard, or system within the Vanguard, and also look for areas of variation. This will then, be used to inform the work programme of the Vanguard to improve patient’s cancer care and reduce variation. The learning from this approach will be shared nationally to inform the development of Cancer Alliances. As a Vanguard, there is an expectation that any models/tools built must be replicable so that they could be rolled out nationally. Data: The commissioning model work will rely on SUS data as this is the dataset relating to commissioning payments throughout the NHS. The Data Analytics work will use HES data via the HDIS tool as this permits rapid quantitative analysis without the need to store a large amount of record-level HES data. National data is required rather than just London and Manchester data because cancer patients may travel some distance to receive care in specialist centres, and to permit the development and evaluation of models/tools which can be used across the country rather than limited to specific areas only.
The Cancer Vanguard will develop programmes to raise public awareness and work collaboratively with partners in education, health and social care to shift the focus towards prevention and early diagnosis, to provide a recovery package to aid those living with and beyond cancer and to greatly improve care at the end of life. Placing patients at the heart of the work across whole organisational boundaries provides an opportunity to make a real difference in cancer care. The Cancer Vanguard will work with patient groups and patient representatives to ensure that they, their families and carers are meaningfully involved at every stage in shaping how the new system will work. Working together across a whole pathway will make a real difference in the way resources are used, and enable clinicians to provide patients with the best cancer care available anywhere in the world. 1a and 1b) Scoping analytics & Model building: Many of the interventions needed for people affected by cancer are the same as those living with other long term conditions. Commissioners should take this into account by commissioning interventions required by the individual rather than dealing with the cancer in isolation. The commissioning and provision of services to support people affected by cancer may or may not need to be cancer specific but does need to follow the principles of person centred care as laid out in the NHS England Long Term Conditions Framework. A new model of commissioning would reflect this need. Scoping analytics and model building will form a pivotal part of the new commissioning model. New models of care are a core component of helping the NHS become more sustainable and are key in the system delivering the aims of the Five Year Forward View. Specifically, the key benefits of a new cancer commissioning model are: • Being able to link payment for cancer services to outcomes that are in the best interest of patients (such as improving experience, quality of life and clinical outcomes), rather than the current system which pays for services as inputs and outputs. • Using the commissioning model to optimise pathways, by incentivising collaboration between providers and reducing duplication in care. This will carry a financial saving to the system but also improve patient experience. • Enabling commissioning for cancer to be less fragmented than the current system which can help prioritise key areas for investment and enable longer term planning. 2a) Performance reports: In October 2014 the NHS in England published its strategy for the next five years (the Five Year Forward View). This strategy made it clear that new ways of organising NHS care would need to be developed in the coming years to meet the challenges faced by the NHS. In the light of this strategy all NHS organisations were asked to put themselves forward to test some of these new ways of organising care (as so-called vanguards). At the same time, an independent cancer taskforce appointed by the NHS was publishing its recommendations, which included that a new way of providing cancer care under a single lead organisation for an entire region should be tested. The production of comparative metrics across London & Greater Manchester will enable the identification of areas which need improvement across a system, and also those areas within a system with large variation. This will then influence the priorities and service improvements which Vanguard implements, which will in turn lead to a reduction in variation and improved cancer patient care. As well as system led change the work is also expected to influence improvement within individual providers of cancer care, given that the benchmarked outputs will be shared with NHS stakeholders across the cancer pathway. Previous experience with other data sources has indicated that this type of approach facilitates local improvement as it highlights where a particular provider is performing relatively badly compared to other similar providers. In addition the methodology for any work undertaken by the Cancer Vanguard can be shared with the emerging Cancer Alliances nationally meaning the benefit of this work should be seen nationally. The benefits should start to be seen during the financial year 2017-2018, onwards.
1a) Scoping analytics: The outputs of the scoping analytics will be in the form of aggregated counts of activity for outpatient referrals and attendances, inpatient admissions, and A&E attendances by dimensions such as Provider, CCG, GP Practice, Cancer Type, Age, Ethnicity, Referral Source and Clinical Unit. Where the aggregated outputs contain small numbers, these will be suppressed in line with the HES Analysis Guide. These aggregated outputs will be shared with providers and CCGs within the 2 Cancer Vanguards. 1b) Model building: The outputs of the model building will be in the form of an interactive tool showing aggregated counts of activity and cost for cancer pathways. Where the aggregated outputs contain small numbers, these will be suppressed in line with the HES Analysis Guide. These aggregated outputs will be shared with providers and CCGs within the 2 Cancer Vanguards. 2a) Performance reports: The analysis of the defined metrics, will feed into the wider Pan-London & Greater Manchester metrics being developed for Cancer Services. As well as tabulated outputs, this also often includes a graphical view of the data along with any key commentary, limitations and also the source of the data. Where aggregated outputs contain small numbers, these will be suppressed in line with the HES Analysis Guide. The specific defined metrics will be developed in conjunction with the Vanguard tumour specific pathway groups. This will include discussion of metrics where outputs have already been produced to establish the frequency any refresh of the data. Illustrative examples of the types of analysis which would be undertaken are- • Counts of numbers of specialist surgical procedure, either limited to cancer diagnosis or split by diagnosis type where the same type of surgery is undertaken for non-cancer diagnosis. • Counts & rates of surgical approach (e.g Open compared to Minimal Access Approach) • Emergency readmission rates within discharge of surgical procedures for a defined number of days (previous national analysis has used 28 or 30 days) • Day case of overnight stay and immediate reconstruction rates for surgical procedures where applicable. For example breast cancer mastectomies. This list of metrics is not exhaustive as it is expected that individual pathway groups will identify additional priorities which may change over time. For all analysis the default position would be to run the analysis for the whole of England, both to enable comparisons with the England rates, and also potentially to share other regional breakdowns of the data to support the introduction of Cancer Alliances nationally. The target date for these outputs is likely to be in early 2017.
Only substantive employees of the Data Controllers (The Royal Marsden NHS Foundation Trust and The Christie NHS Foundation Trust), and the Data Processor (KPMG) will access the data. At no point will any of the data included in this agreement be permitted to be linked with any other record level data, nor will the SUS data be linked to the HES data. Any outputs beyond these substantive employees will contain data only where that data is aggregated with small numbers suppressed in line with the HES Analysis Guide. Note on the role of the Data Processor: KPMG has been engaged to act as a Data Processor for both Data Controllers (Royal Marsden NHSFT and The Christie NHSFT). KPMG’s work is constrained to purpose 1 (the Creation of new commissioning model for cancer services), and will use only SUS data, with no access to HES data. The processing activities support defined purposes as follows: 1) Creation of new commissioning model for cancer services (changing system architecture) [SUS data only] The model and any tools created for this purpose will be developed by the Data Processor and then be delivered to the Data Controllers (The Royal Marsden NHSFT and The Christie NHSFT). The raw SUS, pseudonymised, record-level extracts will be stored in a secure database, which is specifically designed for the purpose with suitable security and administrative controls to govern access. Once the model/tools are developed, the record-level data will be required to allow the model/tools to function correctly. For this reason, the raw SUS (pseudonymised, record-level extracts) will be securely transferred to both The Royal Marsden NHSFT and The Christie NHSFT. Aggregated level database views will be created from the record-level extracts to produce counts of the SUS activity and sum of cost by dimensions such as provider, CCG, age, sex and cancer type. These aggregated database views will then be used to feed data into analysis, model building and performance reporting. Any outputs from the model/tool – that will be shared outside of the Royal Marsden NHS FT and The Christie NHS FT will be aggregated data only (with small numbers suppressed in line with the HES Analysis Guide). The aggregated database views will also be used to feed data into analysis, model building and performance reporting as described below. 1a) Scoping analytics tool This analysis tool will enable the Cancer Vanguards and their provider Trusts and CCGs to understand the current population and existing pathways to determine the population cohort (demographics, location, disease type) and pathways that will be covered by a new payments model. 1b) Model building This will involve the build of a data model to extract the payment mechanism and patient cohort and pathways covered by the current commissioning model (both activity and cost), and calculate the payments for treating those patients under the pathways in scope. The data will be used to count outpatient referrals and attendances, inpatient admissions, and A&E attendances by dimensions such as Provider, CCG, GP Practice, Cancer Type, Age, Ethnicity, Referral Source and Clinical Unit. 2) Pan Vanguard data analytics: [using HES data only] The Data Controllers (Royal Marsden NHSFT and The Christie NHSFT) will analyse hospital records (HES data held in HDIS) for this purpose. 2a) Performance reports Quantitative performance reports will be generated using data from the HDIS system. The Royal Marsden NHSFT and The Christie NHSFT are permitted to download aggregated reports (not record-level) from HDIS which contain small numbers. All small numbers will be suppressed in line with the HES Analysis Guide before any reports are shared to any third party (including the Data Processor). These will then be stored on Royal Marsden and The Christie servers. Data will then be analysed using tools such as Excel.