Investigation of 2018 National Cancer Diagnosis Audit (NCDA) results in London

Royal Free London NHS Foundation Trust requires access to NHS England data for the purpose of the following project: Investigation of 2018 National Cancer Diagnosis Audit (NCDA) results in London.

The following is a summary of the aims of the audit provided by Royal Free London NHS Foundation Trust:

The National Cancer Diagnosis Audit (NCDA) seeks to investigate factors influencing early diagnosis in primary care by asking GPs to provide information about what happened in the leadup to a cancer diagnosis. The audit looks at:

• How many times someone came to see their GP before being referred,

• Symptoms they reported,

• Tests the GP ordered, and

• When and how they were referred to a specialist.

The information GPs provide to the NCDA is combined with information from the National Cancer Registration Service (NDRS) Cancer Registries to understand the whole pathway to cancer diagnosis: from noticing symptoms and going to see the GP, to getting a final diagnosis in specialist care. This helps identify what good practice already exists and can uncover unnecessary or unwarranted delays in cancer diagnosis, which should be addressed to improve care.

In July 2019, the Early Diagnosis workstream of the Transforming Cancer Services Team for London (TCST), Part of the Royal Free Hospital Trust’s Transformation Partners for Health and Care (TPHC) developed a funded incentive scheme for participating practices in London (this was funded by NHS England [NHSE] London region). This led to an unprecedented return of NCDA Data in London and West Essex. London general practices submitted 14,495 audits as part of the 2018/19 round of the NCDA, representing approximately 45% of all cancers diagnosed during this time.

When the TCST fed back this increased return rate to NHSE London and to the constituent Integrated Care Systems (ICSs) via their Early Diagnosis Board, there was interest in understanding the effect of the enhancement, and whether the improved return provided insights that could inform Early Diagnosis work in London.

The incentive scheme prioritised comprehensive submission of audits at Primary Care Network level across the whole region; therefore, the audit Data are likely to provide a good reflection of all cancers diagnosed in London over a year.

This enhanced Data pool (contained within the 2018 NCDA due to the increased return rate) provides the opportunity to expand the analysis of Data within the incentivised regions beyond the national outputs, and the analysis suggested in this protocol provides an opportunity to identify potential factors associated with late-stage diagnosis as well as delayed diagnosis, segmented by demographic categories, stage at diagnosis and tumour type. These findings can then inform and support local planning activities and decisions in collaboration with the London Region, Integrated Care Systems (ICSs) and Cancer Alliances, to increase the potential for earlier diagnosis in future primary care presentations of cancer.

In order to support the earlier diagnosis of cancer in London, Data is needed to identify areas (geographically and pathway based) where patients experience delays. These Data will be used to support planning and service development.

The incentivised, pseudonymised 2018 NCDA Data linked to NDRS Cancer Registrations will be interrogated to identify:

1) Whether the incentivisation has enhanced the representativeness of the cohort,

2) Whether the Data can be used to identify themes associated with late-stage diagnosis,

3) Whether the Data can demonstrate general characteristics of clinical presentation and management in primary care that influence early diagnosis,

4) Whether locally driven safety netting processes are identifiable within the Data,

5) Whether it is possible to identify characteristics specific to particular demographic groups and tumour types that may influence early diagnosis.”

The following NHS England Data will be accessed:

• NDRS Cancer Registration – Linkage to this dataset is to support population analysis, e.g. results by stage, age at diagnosis, ethnicity and gender

• NDRS National Cancer Diagnosis Audit (NCDA) English only 2018 Data – necessary because it will be used to define and identify the cohort of patients required for the analysis and Data will be used in the analysis.

The level of the Data will be pseudonymised.

The Data will be minimised as follows:

• Limited to patients diagnosed with a primary tumour between 1 Jan 2018 to 31 Dec 2018 (as per NCDA 2018 cohort identification) with a linked record within the NCDA.

• Limited to the following geographic areas: patients resident in London and West Essex as defined by Clinical Commissioning Groups (CCG) boundaries (as existed in 2018).

Royal Free London NHS Foundation Trust is the controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above

The lawful basis for processing personal Data under the UK GDPR is:

Article 6(1)(e) - "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller";

This processing is in the public interest because the findings of the work will inform and influence cancer early diagnosis in London, this falls under the “Support for individuals with a particular disability or medical condition” criteria of the Data Protection Act 2018.

The lawful basis for processing special category Data under the UK GDPR is:

Article 9(2)(i) - “processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Domestic Law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy”.

The funding is provided by The Royal Free London NHS Foundation Trust general operations funding, acting as the TPHC at a London level. The funding is specifically for the project described. Funding is in place until at least 31/3/2025. The funder will have no ability to suppress or otherwise limit the publication of findings.

In line with the National Data opt-out policy, opt-outs are not applied because the Data is not Confidential Patient Information as defined in section 251(10) and (11) of the National Health Service Act 2006.

Where individuals have opted out of disease registration by the National Disease Registration Service (NDRS), their Data has been permanently removed from the registry and therefore will not be disseminated under this Data Sharing Agreement (DSA). https://digital.nhs.uk/ndrs/patients/opting-out.

No data will flow to NHS England for the purposes of this Agreement.

NHS England will identify the cohort then provide the linked relevant records from the NDRS Cancer Registration and the NDRS National Cancer Diagnosis Audit (NCDA) datasets to Royal Free London NHS Foundation Trust. The Data will contain no direct identifying data items.

The Data will be stored on servers at sites of the Royal Free London NHS Foundation Trust.

The Data will not be transferred to any other location.

The Data is backed-up at multiple sites in the Royal Free London NHS Foundation Trust.

The Data will be accessed onsite at two locations managed by Royal Free London NHS Foundation Trust and by authorised personnel via remote access.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect Data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

The Data will not leave England at any time.

Access is restricted to employees of Royal Free London NHS Foundation Trust who have authorisation from the Principal Investigator.

No other organisation is permitted to access the Data.

All personnel accessing the Data have been appropriately trained in Data protection and confidentiality.

The data disseminated will not be linked with any other data/ or any data held by Royal Free London NHS Foundation Trust.

Analysts from the Royal Free London NHS Foundation Trust will process the Data for the purposes described above and there will be no requirement and no attempt to reidentify individuals and that any analysis resulting from the released data will not identify individual GP practices.

Findings will be collated and presented to relevant groups and meetings to facilitate discussion and action to address issues identified, this may include confirming appropriateness of current policies and programmes or suggestions for changes to these.

Royal Free London NHS Foundation Trust will write a report describing these findings that include options for policy and service responses that addresses specific issues identified to improve cancer early diagnosis outcomes including reducing inequalities in outcomes in London. Data will be presented in the form of visualisations to support the report and any presentations and published with appropriate suppression of small counts as necessary.

The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The expected outputs of the processing will be:

• Presentation and report of findings to NHS London regional cancer forums, cancer alliances, expert clinical and patient groups. Royal Free London NHS Foundation Trust hope to have initial findings and reports in place within 3 months of Data release.

• Presentation and report of findings to external stakeholders including local government, cancer charities and academic forums. Royal Free London NHS Foundation Trust hope to have initial findings and reports in place within 3 months of Data release. Further reports/visualisations would be within 4-5 months of the release.

• Presentation at national meetings and conferences including CRUK ED conference. Presentation at conferences would be within the year of Data release, as would any subsequent products.

• Submissions to peer reviewed journals - within one year of analysis.

It is hoped that the outputs would be completed and distributed/communicated to the recipients named above within 6 months of receiving the Data from NHS England.

The use of the Data could support:

• Regional planning and budgeting of early diagnosis programmes linked to primary care.

• Development of programmes based on outcomes of this analysis.

• Identification of local training needs

• Identification of communities where further outreach may be necessary to advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions such as obesity and diabetes.

The following specific benefits to patients are expected as an outcome subject to the findings.

• More rapid identification of people with symptoms of suspected cancer.

• Improved pathways to facilitate early diagnosis once cancer suspected.

• Better training programmes for clinicians – to improve knowledge of common scenarios.

• More specific messages to the public and patients about common presentation scenarios where diagnosis at risk of being delayed.

• Tailored cancer awareness raising action / programmes that address more accurately challenges to ED in specific communities or areas.

It is hoped that through publication of findings in appropriate media, the findings will be collated and presented to relevant groups and meetings to facilitate discussion and action to address issues identified, this may include confirming appropriateness of current policies and programmes or suggestions for changes to these.

The report written by Royal Free London NHS Foundation Trust describing findings that includes options for policy and service responses that addresses specific issues identified to improve cancer early diagnosis outcomes including reducing inequalities in outcomes in London.

The actions that will be taken to optimise the potential public benefits from the use of the Data are:

• Working with regional, ICB, cancer alliance, local government and cancer charities to promote key messages that improve public awareness and help-seeking behaviour.

• Providing information to primary care, community and other NHS services on key messages to promote as above to patients and public e.g. via posters and brief clinical advice.

• Informing Cancer Research UK as they are closely involved in NCDA work in London.

Analysis has been used to do "deep dives" of specific cancer sites to assess whether current referral pathways are fit for purpose. Recently, analysis of Ca pancreas NCDA data has helped show the importance of diagnosis in the 50-59 year group and how they present. This has led to an extension of the age range criteria for direct access CT abdomen diagnostic investigation across London.