PRIVACY NOTICE

An evaluation to understand patients’ experiences of Specialist Screening Practitioner appointments following a bowel cancer screening test

About the evaluation  

Public Health England has asked York Health Economics Consortium and Qa Research to conduct this evaluation.

Patients requiring further investigations after completing a screening test in the NHS Bowel Cancer Screening Programme would usually have a face-to-face appointment with a specialist screening practitioner (SSP). This SSP appointment is to assess and prepare the individual for their diagnostic test, usually a colonoscopy. This appointment needs to provide individuals with the information they need to make an informed choice about the follow-on diagnostic test and to assess their medical suitability to undergo the procedure.

Due to the coronavirus (COVID-19) pandemic and government guidance regarding social distancing, NHS England and Improvement (NHSEI) introduced virtual (telephone or video) SSP appointments as well as face-to-face appointments.

The purpose of this evaluation is to understand more about patients’ experiences of SSP appointments so that any necessary changes or improvements can be implemented in the screening pathway.

Taking part in this evaluation is voluntary, which means you can choose not to take part, and also change your mind about taking part at any time – see ‘Your rights’ below.

The information we collect

The personal information we will collect as a part of this evaluation are your name, phone number, e-mail address and postcode. We also collect demographic information such as age category, ethnicity and gender. Because this evaluation relates to the Bowel Cancer Screening Programme, we will collect a small amount of health data such as whether you had a diagnostic test, however you won’t be asked to go into detail about your health.

We collect your information via an online form or over the telephone, where we will ask for your consent to share personal data with Qa Research. We will then use this to recruit participants for detailed telephone interviews. In the telephone interviews, we may discuss personal data.

If you take part in a telephone interview, audio recordings are used by our researchers so accurate notes can be taken. Quotes will be included in the report but Qa Research will take particular care to ensure you are not identifiable.

This evaluation is confidential. This means that your identity and personal details will only be accessed by Qa Research for the purposes of this evaluation. The NHS will not know you have taken part and evaluation reports will only contain anonymous data. This means you will not be named, nor identifiable from any answers you gave. Qa Research will only keep your data for as long as we need it and will delete it within 12 months.

In exceptional circumstances, where a safeguarding or other serious issue is raised in the interview, Qa Research may ask for consent to pass your details on to Public Health England so that they may follow up on this. In this rare circumstance, it will be completely up to you to decide if you want to pass your details along.

Data controller

Qa Research will be the Data Controller for the recruitment of this evaluation. This is because personal data, which is collected via the online form or over the telephone, is provided directly to Qa Research, which will not be passed to any other party, including Public Health England, with the exception of safeguarding issues, mentioned above.

Legal Basis

The legal basis for this evaluation is that it is a ‘public task’. This means that it is carried out in the public interest or in the exercise of official authority vested in the controller. Public Health England undertake evaluations to provide an evidence base to develop and improve the screening programme.  

As part of this evaluation we will collect information about your next steps following your SSP appointment and your race or ethnicity. We must ask for and keep a record of your consent to collect this ‘special category’ (sensitive) data from you.

How we keep your information safe

Qa Research uses a wide range of technology to ensure that any personal data we hold is processed, stored and transferred in a secure way. This includes encryption, password protection and limiting access to personal data to key staff only. We hold Cyber Essentials accreditation and we regularly review our processes, hardware, software and policies to ensure we maintain personal data securely.

Your rights

Participation in the evaluation is voluntary. If you change your mind about taking part, any personal data will be deleted from any study or database in which you are identifiable.

Under the GDPR (General Data Protection Regulation), individuals have rights over their personal data and Data Controllers have a responsibility to fulfil these rights – see ‘Contact’ below. Different rights apply depending on the legal basis being used for processing (for this evaluation, the legal basis is ‘public task’). For this evaluation, your rights include:

• Access to personal data – you can find out if Qa Research or if required Client/another company is using or storing any personal data about you and ask for a copy of your personal data (called a ‘subject access request’).
• Rectification of personal data – a right to have any personal data held about you corrected if it is inaccurate
• Object to processing – a right to object to the use and storage of your personal data. If Qa Research or if required Client/another company agrees to your objection, we must stop using your data for that purpose unless we can give strong and legitimate reasons to continue using your data despite your objections. This right also applies where the lawful basis is legitimate interest (the legal basis used by Qa Research for using and storing your personal data for quality control purposes).
• Restrict processing – if you are concerned about the accuracy of your data or how it is being used you have a right to limit the way your data is used.

You have the right to make a complaint to the Information Commissioners Office (ICO) if you are unhappy with the way Qa Research Ltd/ client processes your personal data. The ICO can be contacted at ico.org.uk or by calling 0303 123 1113.

Contact

If you have further questions about this evaluation, please contact Georgina Culliford at Qa Research on 01904 632 039.