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- Why are we investigating the effect of GP endorsed annual reminders on bowel scope screening participation?
- How long will the study last for?
- Who will be included in the study?
- How will we use your data?
- What do you need to do if you don't want to be included in this study?
Why are we investigating the effect of GP endorsed annual reminders on bowel scope screening participation?
Previous research has shown that an annual reminder letter could increase participation in bowel scope screening by up to 15% among those who didn't attend their appointment or did not respond to their invitation within 12 months of their first invitation. We believe that a recommendation from a GP could further enhance this impact by adding credibility. However, this has not yet been studied for bowel scope screening. This project therefore aims to test whether adding a GP-endorsement to the annual reminder letter will improve participation in bowel scope screening.
How long will the study last for?
This study will last for four months; from the beginning of April 2019 to the end of July 2019 The first reminder will be posted on 1st April 2019 and the last reminder will be posted on 31st July 2019.
Who will be included in the study?
The study will include adults who
- Are living in London Boroughs of Brent, Harrow, and Hillingdon which are being served by the Bowel Cancer Screening Centre at St. Mark's Hospital.
- Are aged 56 at the time of enrolment in the study
- Are registered with a GP who agreed to participate in the study
- Have received a bowel scope screening invitation but have not responded to it in the last 12 months
Individuals who have an open appointment date, have previously confirmed or postponed their bowel scope screening appointment, or contacted the screening programme to cancel or decline the offer for bowel scope screening will be excluded from the study. Moreover, those do not want their data to be shared outside of their direct care will be excluded by NHS Digital from this study. NHS Digital is part of the NHS and was established in 2013 by the Health and Social Care Act 2012 and is responsible for collecting, transporting, storing, analysing, and disseminating the nation's health and social care data.
How will we use your data?
The following figure shows how your data will be processed in 6 steps.
- NHS Digital will identify individuals who are eligible to be included this study and randomly assign to two equal sized study groups. Using a random number generator, eligible individuals will have 50% chance to be in each group. The first group will receive the standard annual reminder as part of their usual care and the second group will receive the standard annual reminder with the GP endorsement of bowel scope screening.
- NHS Digital will send the contact details (your name and address), NHS number, and GP name to an information governance accredited mailing company, CFH Docmail Ltd, using an encrypted server. No other information will be shared with the mailing company. CFH Docmail and NHS Digital conforms to the set of rules outlined by information security standards and their assessments are publicly available on the NHS Information governance website.
- DocMail will send the standard or GP-endorsed annual reminder letter to each study group, as requested by NHS Digital.
- Eight weeks after the last reminder is sent out to individuals, NHS Digital will put together the final dataset for the researchers at UCL. The final dataset will not include identifiable information.
- The research team at UCL will receive the final dataset.
- CFH Docmail will destroy all the data that were obtained during the study.
Our Privacy Notice
Throughout this project, your data will be used in accordance with UK data protection legislation.
The data controller for the purposes of the General Data Protection Regulation (GDPR) is University College London.
The purposes for which your personal data will be used
For the purposes of this research, personal data will be used (1) to identify individuals from the participating GP practices who are eligible to be included in this research project and this will be done by NHS Digital, and (2) to be able to send out the mailed annual reminders by post a year after the initial Bowel Scope Screening invitation and this will be completed by CFH Docmail Ltd. The research team based at UCL's Research Department of Behaviour Science and Health will not have access to personal information and will not be processing personal information at any stage during this project.
Lawful basis for processing
The GDPR requires UCL to specify the lawful basis for processing personal data.
- For personal data, the lawful basis for processing your personal information will be 'public task' (Article 6(1)(e))
- For special category personal data, the lawful basis for processing will be: 'scientific research purposes' (Article 9(2)(j)).
We also apply the common law duty of confidentiality and our project has support under the Health Service (Control of Patient Information Regulations) 2002 ('section 251 support') through the NHS Confidentiality Advisory Group (ref: 17/CAG/0132) to use confidential patient information for research purposes without explicit consent. Our project has also been approved by the following committees and the details of each meeting are available on committee websites;
- PHE Bowel Cancer Screening Research Advisory Committee (ref: 0192)
- NHS Ethics Committee (ref: 16/YH/0298)
- Public Health England, the Office for Data Release (ref: 1617_191)
How long will my personal information be kept for?
All the personal information will be destroyed at the end of the study (See Step 6 in the section titled 'How will we use your data?'). Anonymised data, i.e. data without personal identifiers, will be retained for 10 years in accordance with the UCL data retention policy.
What do you need to do if you don't want to be included in this study?
If you do not want to be included in this study, we need to ask NHS Digital to remove your data from the study before the start date on 1st April 2019. For this purpose, we will require some personal information.
If you wish to opt-out, please download the attached form and return to us by post.
Our Postal Address:
Attn: GP reminders for bowel scope screening Research Department of Behavioural Science and Health University College London Gower Street London WC1E 6BT
If you don't have access to a printer and would like to request a printed copy to be posted to you, please contact the leading researcher, Dr Aradhna Kaushal, by telephone on 020 7679 8254 or by email at aradhna.kaushal.14@ucl.ac.uk. Please do not disclose any personal information such as your NHS number or Date of Birth.
Please note that opting out from this study does not mean your data will not be used for other research purposes in the future. You can find further information on National Data opt-out programme on the NHS Digital website.
Any questions, please contact Dr Aradhna Kaushal by telephone on 020 7679 8254 or by email at aradhna.kaushal.14@ucl.ac.uk.
If you have any questions or concerns about how your personal data is used, please contact us at:
Data Protection Officer Legal Services 6th Floor, 1-19 Torrington Place London WC1E 7HB
If you need further assistance, please contact the University Data Protection Officer, Lee Shailer on data-protection@ucl.ac.uk
If we are unable to address any concerns you may have about the way in which we use your data, you have the right to lodge a formal complaint with the UK Information Commissioner's Office (ICO). Full details may be accessed on the complaints section of the ICO's website.
