Research privacy notice

Introduction

The Institute of Cancer Research is one of the world's most influential cancer research organisations. Access to patient data is vital for the research conducted at ICR, and we implement high security and governance standards to ensure patient confidentiality within our research studies. The ICR obtains appropriate ethical and legal approvals for all research and ensures that it is strictly in the public interest when we use personal information. We do this by following the UK Policy Framework for Health and Social Care Research.

This privacy notice is in addition to the ICR’s main privacy statement and applies specifically to personal information held for research purposes for which the ICR is the Data Controller.

Collecting personal information

To safeguard your rights, we will use the minimum personal information necessary. We collect personal information (which includes information about your health and treatment) for research purposes from the following sources:

  1. Directly from you with your consent
  2. From third-party sources (e.g. NHS organisations, disease registries, other research institutions, NHS England (or predecessor organisations), Office for National Statistics) with your consent or, under exceptional circumstances (where consent is not possible), with relevant approval from the Health Research Authority to do so. A list of studies where we obtain data from national third-party sources (such as the Office for National Statistics) is maintained here.
  3. Pseudonymised (key-coded) information from third-party sources – this information is linked to you as an individual but will not be used by the ICR to identify you. For example, if we receive a unique identifier, such as trial ID, we will not make efforts to ascertain your name, address or any other demographic details from other sources. We place safeguards in all of our processes to protect your identity.

Using your personal information

All of the personal information we collect is used solely for the purposes of carrying out our research. Personal information collected for research will not be used for any other purpose.

Under the General Data Protection Regulation, the ICR’s legal basis for processing this information is for the performance of a task carried out in the public interest. The ICR processes sensitive health and genetic information for the purposes of scientific research with appropriate safeguards in place to protect personal information, as required by the General Data Protection Regulation.

If we have asked for your consent to process your personal information, you can find more information about the use of this on the participant information sheet and consent form.

Retention of personal information

We retain personal information in line with our research retention schedules and regulatory requirements specific to research. We only store and use information that we believe to be factually correct, relevant to our work and not excessive for the purpose it was collected for.

Disclosure of your information to third parties 

Whenever possible, the information we share with third parties will not be identifiable. We disclose personal information (including information about health and treatment) that can identify you to third parties only where there is a legal basis to do so (e.g. with your consent).

Personal information collected for our research may be shared with associated researchers or companies within or outside the United Kingdom (UK) now or in the future. Certain countries outside of the UK may not have laws which protect your privacy to the same extent as the Data Protection Act in the UK. In the event that your information is transferred outside of the UK or Europe, the ICR will take all reasonable steps to protect your privacy including de-identifying information wherever possible.

Your personal information is never disclosed for any purpose other than ethically approved scientific research.

Your rights

You have rights over your personal information by law; these apply to information processed for research purposes, however there are some specific exemptions and your rights to access, erase, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate.

The ICR is committed to making every effort to respect your wishes.

If you would like further information or have any concerns about the use of your personal information, please contact our Data Protection Officer by emailing [email protected] or by writing to:

 

Data Protection Officer,

123 Old Brompton Road,

London,

SW7 3RP.

You also have the right to lodge a complaint about any use of your personal information with the Information Commissioners’ Office (ICO), UK’s national data protection regulator. 

The Institute of Cancer Research is registered with the Information Commissioner's Office under number Z6775661.

We keep our research privacy notice under regular review. This notice was last updated on 23 October 2023.

The Institute of Cancer Research, London, is a world-leading research institute which carries out studies across the field of cancer research – many of them in partnership with other organisations. The ICR has strong controls in place to ensure it adheres to regulations on data privacy and protection, and works closely with its partners to meet their standards on transparency.

Details of medical studies

The following studies contain information provided by NHS England (or predecessor organisations). They record identifiable data such as mortality data (cause and date of death information sourced from civil registration data held by the Office for National Statistics) from cancer registrations and have been granted approval from the Health Research Authority to receive information from third-party sources where consent is not possible. Some studies may also include information provided by NHS Scotland and NHS Wales. These studies use this information to analyse risk factors for cancer and mortality and include:

  • A cohort and questionnaire study of young women treated for Hodgkin lymphoma in England and Wales before 2010 for the cohort, and 2015 for the questionnaire study, investigating the risk of developing a range of treatment-related effects.
  • A case-control study of the causes of leukaemia, relating to patients with leukaemia incidence before 2010 in the southeast of England, plus controls.
  • A national UK study looking at the pre-1997 incidence of endometrial cancers occurring after breast cancer. 
  • A study of risk factors for contralateral primary breast cancer in women in the UK (focused on data gathered before 2008). 
  • A national England and Wales case-control study of breast cancer in men (focused on patients with breast cancer incidence in 2005 or later and including controls).
  • Exploring cancer incidence in UK patient cohorts with:
    • a) insulin-treated diabetes diagnosed before 1994
    • b) paediatric endocrine disease diagnosed before 2000 and associated treatments
    • c) cytogenetic disorders diagnosed before 2003
  • A study of cancer in twins born before 2003 in England and Wales.

Approval has been granted for analysis of identifiable mortality data (cause and date of death information sourced from civil registration data held by the Office for National Statistics) from patients who consented to participate in the following studies:

  • A randomised trial evaluating whether adding chemotherapy and ovarian suppression increase the benefits of prolonged tamoxifen administration in women with early breast cancer. The trial launched in 1993 and closed recruitment in September 2000 – survival data continues to be gathered. 
  • A 1990 randomised trial to determine how giving adjuvant hormone therapy (AHT) affects overall survival versus disease-free survival when given to women with ovarian cancer. The trial recruited 150 women between February 1990 and November 1995 with epithelial ovarian cancer. Survival data continues to be gathered. 
  • A study to determine the effects of micro-metastatic disease on patient outcomes. A total of 350 patients with primary breast cancer were recruited between July 1981 and August 1986. Survival data continues to be gathered. 
  • An ongoing study that follows patients with stage I seminoma who were initially treated with radiotherapy between 1960 and 1992 to analyse incidence of second cancers and specific causes of death.
  • Breakthrough UK Women’s Cohort Study (Breakthrough Generations Study)
  • UK Genetic Prostate Cancer Study

The personal information used from third parties for these studies is not shared with any other organisations. If you think that you may have been included in one of these studies and want further information about it, or if you wish to opt out of it, please do not hesitate to contact us via email at [email protected] or by post at: Data Protection Officer, 123 Old Brompton Road, London, SW7 3RP.

With appropriate ethics committee and Health Research Authority privacy committee approval, identifiers (name and date of birth) from pre-2007 clinical records for a cohort study of patients in the UK with paediatric endocrine disorders or cytogenetic disorders were sent to the Office for National Statistics, NHS Scotland, and NHS Digital, who have and continue to notify the study of cancer registrations and mortality (cause and date of death information sources from civil registration data). These data are used by the ICR for analysis of risk factors for cancer and mortality in the cohort.

The ICR is the data controller for this study. The ICR collect special category data (health information) for the purposes of this study. The lawful basis for processing this information is for the performance of a task carried out in the public interest. The ICR processes sensitive health and genetic information for the purposes of scientific research with appropriate safeguards in place to protect personal information, as required by the EU General Data Protection Regulation.  

Individuals have the right to request from the controller access to and rectification or erasure of the personal data, or restriction of processing of personal data, or to object to the processing of such personal data, as well as data portability. No automated decision-making, including profiling is carried out on these data.

If you think that you may have been included in this study and want further information or if you wish to opt out of it, please do not hesitate to contact us via email at [email protected] or by post; 

ICR Data Protection Officer,

123 Old Brompton Road,

London,

SW7 3RP

If you feel we have breached your rights under GDPR you have the right to lodge a complaint with the Information Commissioners Office.

With appropriate ethics committee and Health Research Authority privacy committee approval, identifiable information was gathered from pre-1994 clinical records and registers for a cohort study of UK patients with insulin-treated diabetes. Identifiers (name and date of birth) were sent to the Office for National Statistics, NHS Scotland, and NHS Digital, who have and continue to notify the study of cancer registrations and mortality (cause and date of death information sources from civil registration data). This data is used for analysis of risk factors for cancer and mortality in the cohort. Appropriate ethics and data protection approval is carried out at all levels in the process.

If you think that you may have been included in this study and want further information or if you wish to opt out of it, please do not hesitate to contact us via email at [email protected] or by post at ICR Data Protection Officer, 123 Old Brompton Road, London, SW7 3RP.

With appropriate ethics committee and Health Research Authority privacy committee approval, identifiable information was gathered from pre-2000 clinical records for a cohort study of cancer in twins in England and Wales. Identifiers (name and date of birth) were sent to the Office for National Statistics and NHS Digital, who have and continue to notify the study of cancer registrations and mortality (cause and date of death information sources from civil registration data). This date is used for analysis of risk factors for cancer and mortality in the cohort. Appropriate ethics and data protection approval is carried out at all levels in the process.

If you think that you may have been included in this study and want further information or if you wish to opt out of it, please do not hesitate to contact us via email at [email protected] or by post at ICR Data Protection Officer, 123 Old Brompton Road, London, SW7 3RP.

With appropriate ethics committee and Health Research Authority privacy committee approval, since 2007 identifiable information on men in England and Wales with breast cancer diagnosed since 2005 has been sent to the Institute of Cancer Research by Public Health England, in order that these men can be contacted to ask if they wish to take part in a study of the causes and genetics of breast cancer. The men are free to take part in the study, or not, as they wish. Appropriate ethics and data protection approval is carried out at all levels in the process.

If you think that you may have been included in this study and want further information, or if you wish to opt out of it, please do not hesitate to contact us via email, or by post at

ICR Data Protection Officer

123 Old Brompton Road

London

SW7 3RP