Understanding and improving the use of investigations in primary care in patients subsequently diagnosed with cancer (ODR1920_196)

University College London (UCL) requires continued access to NHS England National Disease Registration Service (NDRS) National Cancer Registration and Analysis Service (NCRAS) data for the following research project:

Understanding and improving the use of investigations in primary care in patients subsequently diagnosed with cancer.

Before the dissolution of Public Health England (PHE), this request was managed by the PHE Office for Data Release (ODR) under the reference ODR1920_196. All data being retained under this Agreement was previously disseminated by the ODR.

The following is a summary of the aims of the research project:

1. To understand how often are primary care investigations used in patients before a cancer diagnosis, and which patient and disease factors are associated with their use?

2. To understand how the use of these investigations is associated with the length of diagnostic intervals and process and outcome measures of the diagnostic process.

The following NHS England NDRS NCRAS data will be accessed:

• NDRS National Cancer Diagnosis Audit (NCDA)

• NDRS Cancer Registrations

Access to the above datasets is necessary because they provide information that is integral to achieving the aim of the study.

The level of the data is pseudonymised.

The data has been minimised as follows:

• Limited to individuals the NDRS identify as being included in the NCDA 2014 cohort- as defined by the NCDA_Diagnosisdatebest field as patients diagnosed with any cancer type between January 1st 2014 and December 3st 2014 and who were registered at one of the participating general practices in England

AND;

• Limited to individuals the NDRS identify as being included in the NCDA 2018 cohort- as defined by the NCDA_diagnosisdatebest field as patients diagnosed with any cancer type between January 1st 2018 and December 31st 2018

UCL is the research sponsor and the controller is 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;

The lawful basis for processing special category data under UK GDPR is Article 9(2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven.

UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.

The study benefits from oversight/steering by the National Cancer Diagnosis Audit methodology/steering groups, with input from colleagues at the University of Exeter and Cancer Research UK. Neither CRUK nor the University of Exeter will have access to the data held under this Agreement.

Data will be accessed by:

• Undergraduate, Masters or PhD students affiliated with UCL. Any student working with the data held under this Agreement must have completed mandatory data protection and confidentiality training and are subject to UCL’s policies on data protection and confidentiality. Any students accessing the data will do so under the supervision of a substantive employee of UCL. UCL would be responsible and liable for any work carried out by students. These students would only work on the data for the purposes described in this Agreement.

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 section 251(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.

No data is being disseminated under this Agreement. UCL wish to retain NDRS NCRAS data previously disseminated by the PHE ODR. The data contains no direct identifying data items. The data is pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.

The data will be stored on servers that support the UCL Data Safe Haven.

The data will not leave or be accessed outside the UK at any time.

Access is restricted to employees or agents of UCL who have authorisation from the study lead.

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

The data will not be linked with any other data.

There will be no requirement and no attempt to reidentify individuals when using the data.

Analysts from UCL will analyse the data for the purposes described above.

The expected outputs of the processing will be:

• Submissions to peer-reviewed journals by the end of November 2024

• Presentations at appropriate conferences such as the Society for Academic Primary Care or other national and international cancer research or diagnosis research conferences.

The outputs will not contain NDRS data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the datasets from which the information was derived.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Journals

• Social media

• Public reports

• Posters displayed at appropriate conferences

All outputs are due for dissemination by November 2024.

The findings of this research study are expected to contribute to evidence-based decision-making for policy-makers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment and experience of health care users relevant to the subject matter of the study.

Through achieving the study’s aims the findings may allow the identification of opportunities for earlier diagnosis that can be obtained by use of blood and other tests (endoscopy, imaging) in primary care among patients who were subsequently diagnosed with cancer.

The study may allow researchers to obtain a granular understanding of variation between different patient groups in the use of diagnostic tests ordered by GPs, therefore identifying opportunities for improvement. The researchers additionally may gain an understanding of the predictors and implications of using or not using the test for the patients, to support the prioritisation of the implementation of the findings, and their incorporation into clinical audit and improvement initiatives.

It is hoped that through the publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients.

The findings of the study have so far identified avenues for quality improvement activity relating to the management and referral of suspected cancer.