The Cancer Survival Group
This privacy notice is posted to meet guidance from the Information Commissioner’s Office.
Who we are
The Cancer Survival Group is an academic research group based at the London School of Hygiene and Tropical Medicine (“the School”). The School is a higher education institution established by Royal Charter (registration RC000330), and a data controller for the purposes of the Data Protection Act 2018 (registration Z7513362) and the UK General Data Protection Regulation (UK GDPR). The School undertakes to treat all personal data in accordance with these data privacy laws.
This Privacy Notice explains why and how we process personal data for research purposes in the Cancer Survival Group. Together with the School’s Data Protection Policy and guidance, it provides information about your rights under data protection law. This Notice was created on 1 November 2021. We keep it under regular review. Any changes will be posted on the Cancer Survival Group website.
The School’s Data Protection Officer oversees compliance with this Notice. If you have any questions about how we handle personal data, please email email@example.com.
The personal data we are given
We receive data from national and regional cancer registries in the UK and other countries. Population-based cancer registries collect a basic set of data on everyone who has been diagnosed with a cancer in the country or region that they cover. In the UK, the data are provided by the four national cancer registries for England, Scotland, Wales and Northern Ireland. The data for England are provided by Public Health England (from 1 October 2021, by NHS Digital).
The data we are given include the affected organ or part of the body, the type of cancer (e.g. lung cancer, melanoma of the skin, leukaemia), the date of diagnosis, the patient’s sex and region of residence (in the UK, this is England, Wales, Scotland or Northern Ireland) and, if the patient has passed away or emigrated, the date of death or emigration, respectively. The data from some countries may also include the patient’s ethnicity and whether the cancer had spread to other parts of the body by the time it was diagnosed.
What we do with the data
Our research is designed to measure and explain regional, socio-economic and international trends and inequalities in survival from cancer. Reliable surveillance of these trends underpins national and global strategies designed to improve cancer survival and to reduce inequalities in survival.
The cancer survival figures that we publish reflect the extent to which everyone diagnosed with a cancer has access to prompt diagnosis, optimal treatment and the best possible outcome, including cure – not just those patients fortunate enough to have been enrolled in a clinical trial.
For example, we lead CONCORD, a public health research programme for the global surveillance of cancer survival, which has been running since 2000. In this programme, our processing of personal data is carried out to examine and compare long-term trends in the survival of everyone diagnosed with a cancer in the UK and in 70 other countries world-wide.
Our results are a key measure of the overall effectiveness of the health service in managing cancer. They show the extent to which survival from each type of cancer is increasing over time; whether cancer survival in the UK is higher or lower than in other countries; if any international differences are being reduced, and whether there are differences between men and women, or between geographic regions or ethnic groups within a country.
We have published world-wide trends in the survival of patients diagnosed with various cancers between 1990 and 2014. In CONCORD-3 (2018), we published global trends in survival up to five years after diagnosis for more than 37 million patients diagnosed during 2000-2014 with one of 15 common cancers in adults and three common cancers in children. The data were provided by almost 600 scientists from 322 cancer registries in 71 countries and territories world-wide.
The CONCORD programme has become the de facto standard for international comparisons of cancer survival. National governments in the UK and other countries use the results. The Independent Cancer Taskforce in England commissioned us to update CONCORD survival trends for its 2015 cancer strategy. CONCORD results have been used by the Organisation for Economic Co-operation and Development in its global, continental and online publications Health at a Glance since 2017; by the World Health Organisation to evaluate the pricing of medicines for cancer prevention and treatment in 2018, and in a Lancet Oncology Commission on the benefits of delivering sustainable care for children with cancer, world-wide, in 2020.
We publish the results of our research in scientific journals. Our articles are subject to independent peer review before acceptance for publication. You can access our publications here: https://researchonline.lshtm.ac.uk/view/research_centre/XCSG
You can read more about the CONCORD programme here: https://csg.lshtm.ac.uk/concord/
You can read more about cancer survival research at the School in a blog entitled “Surviving cancer: how big data is helping patients live longer, healthier lives”:
Public interest in the results of our research is high. For example, the social media impact score of 1,416 for CONCORD-3 is in the top 0.02% of 19 million scientific articles evaluated to date. CONCORD-3 was one of the 10 most widely cited articles published during 2018-2019 in The Lancet, a leading medical journal.
Cancer patients have been members of the CONCORD Steering Committee since the study began in 2000. In 2017, Cancer Research UK awarded the Cancer Survival Group special recognition “for [our] sector-leading working involving people affected by cancer in the design and delivery of cancer research”.
Processing personal data within the Cancer Survival Group
The personal data are processed only by scientists who are members of the Cancer Survival Group. All our researchers have undergone relevant training and have signed binding declarations to maintain the security and confidentiality of the data.
Sharing of personal data with other bodies
We do not share any personal data with other bodies. The personal data we hold are not shared with, given to, or sold to any other organisation, whether national or international, in the UK or any other country, in any form whatsoever. Such transfers are expressly prohibited by our legally binding Data Sharing Agreements. We do not use external agencies to do any data processing on our behalf.
Retention of personal data
The data that we are given by cancer registries are held in trust for periods specified in each Data Sharing Agreement. We can only use the data for the purposes set out in those agreements. We must justify any request to extend the period by an amendment to the agreements.
How we protect personal data
We operate comprehensive physical, managerial and electronic procedures to reduce the risk of data loss to the absolute minimum. Our computers are in a digitally locked room to which only Cancer Survival Group personnel have access. The computers are not connected to the internet, whether by cable, wireless or any other means. We are required to document our security procedures to the satisfaction of both the UK’s statutory Health Research Authority and of all the cancer registries that share their data with us for research.
The principal investigators of the CONCORD programme are Professor Claudia Allemani and Professor Michel Coleman. They have more than 20 and 30 years of experience, respectively, in international comparisons of cancer survival.
You have the right of access, rectification, erasure, restriction and objection to the processing of your data.
We are not given any data about UK cancer patients who have opted out of the use of their data except for their own clinical care.
The data that we are given do not contain the name, address, postcode, national insurance number, NHS number, national identity number or any other unique identifier of any cancer patient. We do not hold any such data.
Therefore, we do not know the personal identity of any of the patients whose data we process. We do not produce any information that could be used to influence clinical decisions about the diagnosis or treatment for any individual patient. Instead, we produce summary statistics about the patterns of survival for all patients with cancer. The results of our research do not enable any cancer patient to be identified.
You have the right to complain about the processing of your data. If you are dissatisfied, please contact the School’s Data Protection Officer in the first instance at firstname.lastname@example.org. If you remain dissatisfied and you live or work in the UK, the relevant authority is the Information Commissioner’s Office. Every Member State of the European Union (EU) has its own national supervisory authority. The European Data Protection Board oversees adherence to the General Data Protection Regulation (GDPR) in the 30 countries of the European Economic Area (the 27 EU Member States plus Iceland, Liechtenstein and Norway). If you live in a country outside the European Economic Area, you have the right to raise a complaint with your national supervisory authority.
How to contact us
- By post: Professor Michel Coleman, Head of the Cancer Survival Group, London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT, United Kingdom.
- By email to the Cancer Survival Group: email@example.com.
- By telephone: you can call us on +44 20 7927 2203, but during the coronavirus pandemic we may not always be able to respond because of operational constraints.
- By email to the School’s Data Protection Officer: firstname.lastname@example.org.
The lawful basis for processing personal data
in the Cancer Survival Group
Legal authoritya to analyse data on individual cancer patients without consent requires approval from the UK’s Health Research Authority (HRA). The HRA can give permission to access the data under the NHS Act 2006 without breaching the common law on confidentiality. To apply for this permission, we are required to provide a comprehensive description of the study and the procedures by which the confidentiality and security of the data will be protected. The independent Confidentiality Advisory Group advises the HRA on whether to accept applications, and if so under what conditions. Accepted applications are published in an on-line register on the HRA web-site.
Following approval, we are required to submit annual reports documenting any concerns that may have arisen, and to provide a basis for continuing statutory and ethical support.
For example, the CONCORD programme for the global surveillance of cancer survival operates with statutory support from the Health Research Authority (ECC 3-04(i)2011), and with ethical approval from the NHS Research Ethics Service (11/LO/0331) and from the Ethics Committee of the London School of Hygiene and Tropical Medicine (#12171).
We are also required to show that there is a legal basis to process personal data on health. The UK’s Data Protection Act 2018 (DPA 2018) is closely aligned with the European Union’s General Data Protection Regulation (GDPR); following Brexit on 31 December 2020, this is now the UK-GDPR.
The DPA 2018 (Section 10(2)) states that the processing has a legal basis only if it covers the processing of data necessary for health or social care purposes, including “the management of health care systems or services…” (Schedule 1, Part 1, paragraphs 2-4). Under UK-GDPR, the legal basis for processing these data has several elements:
- Article 6(1)(e), under which “processing is necessary for the performance of a task carried out in the public interest…”; and
- Article 9(2)(h), in that the processing of special categories of personal data such as health and ethnicity is exempt from the general prohibition against such processing in Article 9(1), because it is “necessary for the purposes of … the assessment of … the provision of health or social care or treatment or the management of health or social care systems and services on the basis of domestic law …”; and
- Article 9(2)(i), in that the processing is “necessary for reasons of public interest in the area of public health, such as… ensuring high standards of quality and safety of healthcare…, 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”; and
- Article 9(2)(j), in that the processing is “necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) [as supplemented by section 19 of the 2018 Act] based on domestic 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”.
Finally, GDPR Article 9(3) allows processing of the special categories of personal data for the purposes referred to in Article 9(2)(h) if they are “processed by or under the responsibility of a professional [who is] subject to the obligation of professional secrecy under domestic law or rules established by national competent bodies or by another person also subject to an obligation of secrecy under domestic law or rules established by national competent bodies”. In the UK, the national competent body is the statutory General Medical Council, with which Professor Coleman is a registered medical professional (no. 2252658), subject to obligations of professional secrecy.
a Under Section 251 of the NHS Act 2006, and the Health Service (Control of Patient Information) Regulations 2002 (Statutory Instrument 2002/1438).