Privacy notice
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 updated on 1 June 2024. 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 dpo@lshtm.ac.uk.
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 NHS England).
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. The data we are given do not include the name, address, postcode, national insurance number, NHS number, national identity number or any other unique identifier of any cancer patient.
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.
CONCORD-4 is now in progress. We have invited more than 400 population-based cancer registries around the world to participate. We will examine world-wide trends in 5-year and 10-year survival for adults diagnosed with a cancer over the 32-year period 1990-2021. Some registries will provide even more recent data. We will also be able to examine the real-world impact of the COVID pandemic (2020-) on whether patients tended to be diagnosed at a later stage of disease, as well as their survival.
We will include 22 cancers or groups of cancersa that collectively represent 84-90% of all cancers in adults; the proportion varies by World Bank national income group.
We have also invited submission of data on all cancers in children, in partnership with St. Jude Children’s Research Hospital in Memphis TN, USA. This will enable monitoring of progress towards the target set by the World Health Organisation’s Global Initiative for Childhood Cancer, which is to increase five-year survival for all cancers combined in children (0-14 years) from 30% to 60% by 2030.
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”: https://www.lshtm.ac.uk/research/research-action/features/surviving-cancer-how-big-data-helping-patients-live-longer
Public interest
Public interest in the results of our research is high. For example, the social media impact score of 1,416 for the summary article for CONCORD-3 is in the top 0.03% of over 26 million scientific articles evaluated to date. The summary article 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 certified 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 all the cancer registries that share their data with us for research.
Principal investigators
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.
Your rights
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 dpo@lshtm.ac.uk. 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: survival@lshtm.ac.uk.
- By telephone: you can call us on +44 20 7927 2203.
- By email to the London School’s Data Protection Officer: dpo@lshtm.ac.uk.
The lawful basis for processing personal data
in the Cancer Survival Group
Legal authorityb 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 a report every year documenting any concerns that may have arisen, and to provide a basis for continuing statutory and ethical support fort the research.
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 (#28686).
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 legal basis for processing personal data in the Cancer Survival Group is UK-GDPR Article 6(1)(e): processing is necessary for the performance of a task carried out in the public interest, and that task has a basis in law. The specific task takes the form of research. The basis in law is the School’s Royal Charter, which empowers the School to perform certain functions in operating as a higher education institution. These functions include “promoting … research… and education in public health and tropical medicine and such other academic subjects as [the School] may consider appropriate”.
The lawful condition for processing special category personal data is GDPR Article 9(2)(j): processing is necessary for scientific research purposes or statistical purposes, in accordance with Article 89(1) and with a basis in law.
a Lip and oral cavity, oesophagus, stomach, colon, rectum, liver, gallbladder, pancreas, larynx, lung, melanoma of the skin, breast (women), cervix, corpus uteri, ovary, prostate, kidney, urinary bladder, thyroid, brain, lymphomas and leukaemias.
b Under Section 251 of the NHS Act 2006, and the Health Service (Control of Patient Information) Regulations 2002 (Statutory Instrument 2002/1438).