Cancer Programme Pilots Evaluation (England): transparency notice

This transparency notice explains for the Cancer Programme Pilots Evaluation:

  • Why we collect information about you (we call this “personal data”).
  • What we do with it, including who we share it with.
  • How long we keep it for and where we store it.
  • Our legal basis for using it.
  • What your data protection rights are.

This notice covers the data we collect for the Cancer Programme Pilots from health care services in England.

This notice should be read in conjunction with the NHS England General Privacy Notice.  To read more about how NHS England uses personal data to improve health and care, see Transparency Notice: how we use your personal data.

About the Cancer Programme Pilots Evaluation

The NHS Long Term Plan (LTP) was published in January 2019. It sets out stretching ambitions and commitments to improve cancer outcomes and services in England over the next ten years. The key ambitions in the NHS LTP for cancer are:

  • by 2028, 55,000 more people each year will survive their cancer for five years or more; and
  • by 2028, 75% of people with cancer will be diagnosed at an early stage (stage one or two).

The NHS Cancer Programme continues to support the recovery of cancer services, funding Pilots to lead change at the local level through Cancer Alliances, who work in collaboration with their local Sustainability and Transformation Partnerships (STPs), Integrated Care Boards (ICBs) and their Integrated Care Systems (ICSs).

The Cancer Programme collects data on all their pilots (Cancer Pilots) for monitoring and evaluation purposes, as they need to understand how effective their Pilots are individually and together for creating changes to benefit patients, such as improving earlier diagnosis and survival of cancer.

It is expected that the data collected will be used to evaluate a number a Cancer Pilots, together and individually. Those which are currently being evaluated are:

Where we get your data from

For Cancer Programme Pilots, we collect data from health care providers in England who have been commissioned by NHS England to deliver the Pilots.

Data is submitted securely to NHS England. These organisations are legally obliged to provide NHS England with the information as set out in the Cancer Programme Pilot Evaluation Data Provision Notice issued to them under section 259(1)(a) of the Health and Social Care Act 2012.

For current Pilots we collect data from:

  • Community Pharmacies in England who are participating in the Community Pharmacy Pilot, as set out in Annex A of the Data Provision Notice
  • Targeted Lung Health check sites in England, who are participating in the TLHC Pilot As set out in Annex B of the Data Provision Notice

How we use your data

We will de-identify your data and use your de-identified data to determine the outcomes of patients referred through the Cancer Programme Pilots, which is necessary to evaluate the safety and effectiveness of these Pilots.

The de-identified data is linked to other data NHS England already holds about your care and treatment which is held in other national data datasets we collect. This includes:

The linked de-identified data will also be analysed to produce anonymous aggregate management information reports which will not identify any individuals.

Our role

Under data protection law, NHS England is the ‘controller’ for the Cancer Programme Pilot data collections.  This means that we make decisions about what personal data we need to collect and how we will use your data to run the data collection. More information about our legal basis to process your data is in the ‘Our Legal Basis’ section below.

Our legal basis

NHS England is required to have a legal basis under data protection law to collect and process your personal data to evaluate the Cancer Pilots.

Under UK GDPR, NHS England is the joint controller of your data with the Secretary of State for Health and Social Care with regard to the establishing the purposes of the Cancer Programme Pilots Evaluation.  NHS England is sole controller in respect of processing your personal data.

Our legal basis is:

Legal obligation – Article 6(1)(c) of UK GDPR.  This is because the Secretary of State for Health and Social Care has issued NHS England with Directions under section 254 of the Health and Social Care Act 2012 to collect and analyse Cancer Pilots data. These Directions are called the Cancer Pilots Evaluation Directions 2024

We also need an additional legal basis in the UK GDPR and the Data Protection Act 2018 (DPA 2018) to process special categories of personal data, which includes data about your health. Our legal bases to use data relating to your health for the purposes of the Cancer Pilots are:

  • GDPR Article 9 (2) (g) – processing is necessary for reasons of substantial public interest, on the basis of 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. DPA 2018 Schedule 1, Part 2 (6) (2) (a) Statutory etc and government purposes – the processing is necessary for the exercise of a function conferred on a person by an enactment or rule of law and is necessary for reasons of substantial public interest; and/or
  • Article 9 2 (h) Processing is necessary for the provision of health care or treatment, and for the management of health care systems or services, supplemented by DPA 2018, Schedule 2, Part 1, paragraph 2 health and care purposes; and/or
  • Article 9(2)(i) – public interest in the area of public health, supplemented by DPA 2018, Schedule 1 Part 1, paragraph 3 – public health; and/or
  • Article 9(2)(j) processing is necessary for Research and statistics supplemented by DPA 2018 paragraph 4: Schedule 1.

Who we share data with

We treat the data we hold with great care. All data which is shared by NHS England is subject to robust rules relating to privacy, security and confidentiality and only the minimum amount of data necessary to achieve the relevant health and social care purpose will ever be shared.

De-identified and anonymous data obtained for the purposes of the Community Pharmacy Pilot is shared or is expected to be shared with:

  • Cancer Alliances and local health delivery teams (including pharmacies) regularly throughout the pilot the purpose of service evaluation via aggregate management information reports (with small number suppression where required) and to monitor progress and benchmark projects.

De-identified and anonymous data obtained under the Targeted Lung Health Check pilot is shared or is expected to be shared with :

  • IPSOS UK – Aggregated datasets (with small number suppression where required) will be shared with to undertake the impact and economic evaluations to support the evaluation of the pilot.
  • Cancer alliances and local Integrated Care Teams – Aggregated datasets (with small number suppression where required) will be made available for regions for ongoing monitoring and evaluation of their local services.

Other organisations may be able to apply to access the data we have collected, linked and analysed under the Cancer Programme Pilots Evaluation Directions following an application through NHS England’s Data Access Request Service (DARS). Any data sharing will be subject to the organisations applying to access the data having a lawful basis to process it, and NHS England having a lawful basis to disclose it. Each organisation we share data with must sign a Data Sharing Framework Contract and a Data Sharing Agreement and we carry out audits to check they are using the data as agreed. Where a DARS application is approved, data may be shared for analysis through the Data Access Request Service and NHS England Secure Data Environments, in line with NHS policy on Secure Data Environments

We may also publish anonymised data we have. This enables the NHS and other organisations to use this anonymous data for statistical analysis and for planning, commissioning and research purposes. We never publish any data that could identify you.

How long we keep data for

The minimum retention period for Cancer Programme Pilots data is 8 years after the closure of the Cancer Programme Pilots programme.  This retention period will be reviewed regularly to ensure that the data is only held as long as is necessary our purposes in accordance with the NHS England Records Management Code of Practice 2021 and our Records Management Policy.

Where we store data

We securely store your data on our servers in the United Kingdom (UK).

Your data protection rights

Under data protection law, you have the following rights over your data for this collection:

  • Your right to be informed – You have the right to be told how and why we are using your personal data. We have published this transparency notice to provide you with this information.
  • Your right to get copies of your data – You have the right to ask us for copies of your personal data (right of access). For more information, see how to make a subject access request.
  • Your right to get your data corrected – You have the right to ask us to correct (rectify) your personal data if you think it is inaccurate or incomplete.
  • Your right to limit how we use your data – You have the right to ask us to limit the way we use your personal data (restrict processing) in certain circumstances.

To make request to exercise your data protection rights, email us at


National Data Opt-Out

When NHS England collects the Cancer Programme Pilots data from healthcare providers

If you have registered a National Data Opt-Out, NHS England can still collect your data under the Cancer Programme Pilots Directions 2024.  This is because the National Data Opt-Out does not apply where NHS England has a legal obligation to collect the data (see section 6.4 of the National Data Opt-Out Operational Policy Guidance for more information).

When NHS England shares Cancer Pilots data

For any data we share with other organisations through our Data Access Request Service, we will apply the national data opt-out where it applies in line with the National Data Opt-Out Operational Policy Guidance.

You can find out more about and register a national data opt-out or change your choice on

Your right to complain

We take our responsibility to look after your data very seriously. If you have any questions or concerns about how NHS England uses your data, please contact our Data Protection Officer at:

If you are not happy with our response, you have the right to make a complaint about how we are using your data to the Information Commissioner’s Office by calling 0303 123 1113 or through their website:

Changes to this notice

We may make changes to this notice. If we do, the ‘last edited’ date on this page will also change. Any changes to this notice will apply immediately from the date of any change.

NHS England » Those taking part in the Community Pharmacy Consultation Service for people attending Emergency and Urgent Care with a minor illness: NHS England is piloting a new service in Community Pharmacies to offer a consultation and cancer referral service for people who have attended urgent or emergency care with a minor illness or who need an urgent repeat prescription.  This referral pathway from Community Pharmacies into secondary care is a crucial enabler for improving earlier diagnosis of cancer. The evaluation of the Pilot aims to aims to understand what works well, and less well and, if necessary, how it might be improved in the future.

Types of personal data we process – Community Pharmacy

We collect the following information from each of the Community Pharmacy Cancer Pilot sites:

Personal data, such as your

  • NHS number
  • Gender at birth
  • Gender identity if different to that at birth
  • Ethnicity
  • Details of Community Pharmacy consultation
  • Details of diagnoses following the Community Pharmacy referral

Targeted Lung Health Checks (NHS England » Evaluation of the Targeted Lung Health Check programme)

The targeted lung health checks programme is a new and ground-breaking flagship Pilot of work in England, offering free lung health checks to eligible people. This Pilot will contribute to the Cancer Ambitions of the NHS Long Term Plan, by improving the stage that Lung Cancers are being diagnosed and the survival for those diagnosed with Cancer.  You can find out more about the TLHC service on the website.

Types of personal data we process – Targeted Lung Health Check

We collect the following information from each of the Targeted Lung Health Check Cancer Pilot sites:

Personal data, such as your

  • Pseudonymised Patient Identifier
  • Age
  • Sex
  • Ethnicity
  • Details of any pre-existing health conditions
  • Details of the Targeted Lung Health Check referral