ASCEND


ASCEND

ASCEND study

The ASCEND study involved 750,000 people who were invited to take part in the NHS Bowel Cancer Screening Programme in England. This project was led by Professor Rosalind Raine (University College London, UCL), and involved a collaboration between the NHS Bowel Cancer Screening Programme, the Health Behaviour Research Centre (UCL), the Centre for Cancer Screening (Queen Mary University of London) and the CSPRG (Imperial College London). We hope that the results will be used to inform the NHS Bowel Cancer Screening Programme on how best to invite people for screening in the future and to improve the effectiveness of the programme. This study was funded by the NHS National Institute for Health Research (NIHR) Programme Grants for Applied Research (PGfAR) scheme.

The trial is registered with the ISRCTN registry. Its unique number is 74121020.

Our Data Protection and Privacy Notice

This privacy notice explains your rights to your personal information, what you can expect us (the Cancer Screening and Prevention Research Group) to do with your personal data and our lawful basis for doing so. This notice also explains who you should contact if you have any queries or complaints about how we are processing your personal data.

Under the 2018 General Data Protection Regulation (GDPR) and accompanying Data Protection Act (2018) ‘personal data’ is any data that can be linked to an identifiable individual (for a full definition see: Information Commissioners Office [ICO] website: What is Personal Data?). Some types of personal data, such as health data, are additionally classified as ‘special category personal data’. The law considers special category personal data to be more sensitive and gives it more legal protection (for more information see: ICO website: Special Category Data). As the Cancer Screening and Prevention Research Group processes (processing is the term used to refer to collecting, analysing and storing data) health data, much of the personal data we hold is considered to be special category personal data.

Who is responsible for the lawful processing of your personal data?

The GDPR and Data Protection Act define roles and responsibilities for those involved in processing personal data.

The Cancer Screening and Prevention Research Group (hereafter; CSPRG) are a research group at Imperial College London. The CSPRG can be contacted via the ‘Contact Us’ page on this website.  The data controller determines the purpose for which and the manner in which personal data is to be processed see ICO website: Controllers and Processors. For the personal data held by the CSPRG, the data controller is Imperial College London. The data controller’s representative for our data is the Director of Information Governance for Academic Health Sciences. All queries relating to the handling of personal data should be directed to the Imperial College London Data Protection Officer via email at dpo@imperial.ac.uk.  Contact details can also be found at the end of this privacy notice.

Why are we processing personal data?

The research focus of the CSPRG is bowel cancer, also known as colorectal cancer. In the UK, every year over 41,000 people are diagnosed with bowel cancer and 16,000 people die from this disease. Through our research we hope to reduce the number of people being diagnosed with bowel cancer and dying from this disease. Much of our work focuses on how to help make bowel cancer screening and surveillance programmes more effective and acceptable for patients, and more efficient for the NHS, and other health services internationally. To understand the effectiveness of bowel cancer screening and surveillance programmes, we conduct large scale studies on procedures conducted and the benefits to patients.  Identifiable patient data are usually necessary to track long-term health outcomes from participants enrolled in our studies. The CSPRG therefore needs to collect and hold personal data – often special category personal data. Our more specific purposes for processing data for each of our studies are detailed on the ‘Studies’ pages of our website.

What personal data do we have?

The personal data we hold is special category personal data relating to individual health. For example, for several of our studies we analyse procedure and treatment information, information about cancers occurring, whether they progress and the patients’ long-term health outcomes. In addition, we also often require some basic information about patients such as age and gender to inform our analysis. The full details of the personal data processed for each of our studies can be found on the ‘Studies’ page of our website.

To fulfil our research aims we obtain personal data from a variety of sources. Much of our data is either obtained directly from NHS Trusts, or via third parties such as NHS Digital, the Office for National Statistics, the Bowel Cancer Screening Programme, National Cancer Registries (including the Welsh Cancer Intelligence and Surveillance Unit) and Information Services Division Scotland, part of NHS National Services Scotland.  More detailed explanations of our sources of data can be found on the ‘Patient Data’ page and ‘Studies’ pages of our website.

How do we process personal data?

All personal data we hold are processed in secure systems. For each active study we have completed a Data Protection Impact Assessment that has been approved by the Head of the CSPRG (as the Information Asset Owner), the Imperial College London Data Protection Officer and the Imperial College London Compliance and Information Governance Manager. No processing performed by the CSPRG involves automated decision-making or profiling. Unless stated otherwise on the ‘Studies’ pages of our website, all personal data are processed exclusively by the CSPRG.  None of our studies process or transfer personal data to any third countries or international organisations.

The Imperial College Data retention policy mandates that data is retained for ten years after the end of a study (see the College Retention Schedule here). The expected end of these ten year retention periods for each of our studies are listed under the ‘Studies’ pages of our website under the ‘How long will we retain the data?’ sections.

What is our lawful basis for processing personal data?

Processing personal data requires justification under two legal frameworks: the GDPR/Data Protection Act 2018 and under the common law duty of confidentiality.

Article 6 of the GDPR lays out eight valid bases under which personal data can be processed lawfully. We process personal data under lawful basis 6(e) ‘Public task’ as: processing is necessary for the performance of a task carried out in the public interest. We are also required to have a separate lawful basis for processing the more sensitive special category personal data. Our legal basis for processing special category personal data is Article 9(j)processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes […]

In addition, health data (such as that the CSPRG hold) require a separate lawful basis under the common law duty of confidentiality. In some of our studies, patients consented to be part of the study and for the CSPRG to process their data. In other studies, consent could not be sought due to practical considerations or the nature of the study. In these studies, we have obtained lawful permission to obtain and process personal data under section 251 of the National Health Act 2006. The common law legal bases for data processing in each study are explained in the ‘Studies’ pages of our website under the ‘What approvals has the study received?’ sections.

What are your rights concerning your personal data?

The GDPR grants individuals several rights concerning their personal data:

  • The right to object (to processing of the data)
  • The right to correct (inaccurate or incomplete data)
  • The right to erasure (also known as “the right to be forgotten”)
  • The right to restrict processing (e.g. while the accuracy of the data is contested)
  • The right to portability (to have a copy of any data you have provided to us)
  • The right to access (to have a copy of data we hold about you)
  • The right to withdraw consent (if you have previously consented to take part)

If you think that we might be processing your data and you wish to exercise any of the rights listed above, please get in touch using the details on the Contact Us page or by contacting the Imperial College London Data Protection Officer via email at dpo@imperial.ac.uk.  Though it may not always be possible for us to fulfil your request, we will respond to your query within one month.  For more information on your GDPR rights, please see guidance provided by the Information Commissioners Office.

Where can you direct queries or complaints?

Please be aware that individuals also have a right to complain to a supervisory authority- in this case the Information Commissioners Office (ICO) – if they feel their data is being used unlawfully. The ICO does recommend that you seek to resolve matters with the data controller – for our data that is Imperial College London – before contacting the commissioner’s office. If you wish to raise a complaint on how we have handled your personal data or if you want to find out more about how we use your data, please contact Imperial College London’s Data Protection Officer via email at dpo@imperial.ac.uk, via telephone on 020 7594 3502 or via post at Data Protection Officer, Faculty Building Level 4, Imperial College London, London SW7 2AZ. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can raise your complaint with the Information Commissioner’s Office.

What were the aims of the ASCEND study?

In the UK, over 40,000 people receive a diagnosis of bowel cancer every year, and over 16,000 die from the disease. Studies suggest that screening the general population can help identify cancer at an earlier stage, when treatment is much more likely to be successful.

The English NHS Bowel Cancer Screening Programme was started in 2006 and aims to reduce the number of people dying from bowel cancer. Every two years, people aged between 60–74 years old are sent a test to look for hidden blood in the stool, which can sometimes be a sign of bowel cancer. This test is called a faecal occult blood test or FOBt. The test is completed at home and then returned in a prepaid envelope to a screening centre for analysis. It has been estimated that the risk of dying from bowel cancer is reduced, by about 25%, in those who regularly participate in FOBt screening, but not everyone takes part in screening when invited.

Findings from the NHS Bowel Cancer Screening Programme suggest that people living in more deprived areas are less likely to participate in the screening programme. This is concerning because these people are also more likely to die from bowel cancer. The decisions people make when it comes to screening participation are likely to be influenced by the way in which they are invited, and the information they receive with their invitation. The ASCEND study tested four different invitation/information strategies in the NHS Bowel Cancer Screening Programme to see if any could increase the numbers of people in more deprived areas participating in screening, without compromising already much higher participation in other areas.

What type of study was ASCEND?

Four different invitation/information strategies were tested as part of the ASCEND study and compared with the standard bowel cancer screening invitation letter to see if screening participation could be improved. During the study period, people invited for screening might have received, at random, one or a combination of the following as part of the ASCEND study:

  • The standard bowel cancer screening invitation letter;
  • A simplified summary leaflet;
  • A narrative leaflet which described individuals’ experiences of screening;
  • A statement of endorsement of the screening programme from the patient’s GP practice;
  • An enhanced reminder letter targeted specifically at those who had not responded.

No other aspects of the NHS Bowel Cancer Screening Programme were changed during the study. People received the same care as part of the screening programme regardless of whether they received an alternative invitation, or had their information used as part of the study.

When and where did this study take place?

The ASCEND study took place across England between November 2012 and August 2013.

What type of information does the CSPRG hold for the purposes of the ASCEND study?

The CSPRG does not hold personal data for purposes of the ASCEND study

What are the results of the study and what impact have they had?

Findings from the ASCEND study have been published in several journals including The Lancet. You can also access more information about this study and its findings on the UCL website.

Only one of the strategies tested, the enhanced reminder, increased the likelihood of people in the most deprived areas participating in screening. In addition, although it did not appear to particularly target more deprived areas, the GP practice endorsement modestly increased the likelihood that people in all areas would participate in screening, so this was also a positive finding.

It is hoped that these new invitation strategies will be implemented in the NHS Bowel Cancer Screening Programme as routine, to help reduce the risk of inequalities associated with screening and to improve overall participation.

Publications:

Raine R, Atkin W, von Wagner C, et al. Testing innovative strategies to reduce the social gradient in the uptake of bowel cancer screening: a programme of four qualitatively enhanced randomised controlled trials. Southampton (UK): NIHR Journals Library; 2017 Mar

Raine R, Moss SM, von Wagner C, Atkin W, et al.  A national cluster-randomised controlled trial to examine the effect of enhanced reminders on the socioeconomic gradient in uptake in bowel cancer screening. Br J Cancer. 2016 Dec 6;115(12):1479-1486.

McGregor LM, von Wagner C, Atkin W, et al. Reducing the Social Gradient in Uptake of the NHS Colorectal Cancer Screening Programme Using a Narrative-Based Information Leaflet: A Cluster-Randomised Trial. Gastroenterol Res Pract. Vol 2016, Article ID 3670150

Raine R, Duffy SW, Wardle J, et al. Impact of general practice endorsement on the social gradient in uptake in bowel cancer screening. Br J Cancer. 2016 Feb 2;114(3):321-6.

Wardle J, von Wagner C, Kralj-Hans I, et al. Effects of evidence-based strategies to reduce the socioeconomic gradient of uptake in the English NHS Bowel Cancer Screening Programme (ASCEND): four cluster-randomised controlled trials. Lancet. 2016 Feb 20;387(10020):751-9