Your opportunity to feed back on the Neonatal Care Experience Survey

What are we doing in the research study?

We would like to understand your views on the Neonatal Care Experience Survey. This is a new national survey being developed to learn about the experiences of parents whose babies have received neonatal care in the NHS. The survey will help NHS England and neonatal services understand what is working well and what could be improved.

Before the survey is launched, we are testing the questionnaire and survey invites with parents to make sure they are clear, relevant, and easy to complete. Your feedback during this interview will help us improve the survey.

Who can take part?

We are looking for parents aged 16 or above whose baby received neonatal care in the last 12 months for at least 24 hours. The baby must have since been discharged home from neonatal care.

What will happen if I take part?

If you agree to take part, a researcher from Picker will arrange a convenient time to speak with you. The interview will last up to 90 minutes for mothers completing it alone or for the mother together with your baby’s other parent. If only the other parent is interviewed, the interview will last up to 30 minutes. The interview will be carried out remotely by video call or telephone, although a face-to-face interview may be possible. With your consent, the interview will be audio or video recorded so that the research team can refer back to your feedback when writing up notes from the interview.

If you choose to take part online, we will send you the questionnaire as a survey link. Alternatively, you can choose to have a paper copy of the questionnaire posted to you.

You will be asked for your views on the survey questions and the survey invite materials. This may include your thoughts on how questions are worded, whether instructions are clear and how acceptable you find the proposed use of patient information in the survey.

After completing the interview, you will receive a Love2Shop or Amazon electronic gift voucher as reimbursement for your time.

Do I have to take part?

No, participation in this research is entirely voluntary. It is up to you whether or not you take part. You can decide not to take part or withdraw at any time – even after the interview has started, without giving a reason.

If you decide not to take part, this will not affect the care you or your baby receive in any way. NHS providers who delivered your care or your baby’s care will not know who has taken part.

Who is organising the research

The research is being carried out by Picker, an independent not for profit research organisation (https://picker.org ). Picker runs the Neonatal Care Experience Survey acting as a ‘data processor’ on behalf of NHS England (the ‘data controller’).

Your privacy

• All information provided by you through the research will be treated confidentially and securely, in accordance with this Privacy Notice.
• The feedback you provide will be looked at in full by the researchers analysing the data. No identifying information (such as names) will be shared with anyone other than the research team at Picker involved in this project. Picker will report views anonymously, ensuring no one can link your comments to you (including any quotes used in the report).
• What you say about the survey approach will not affect your or your baby’s healthcare or rights to healthcare in any way.
• We ask for consent to record the interview for transcription purposes. Given the nature of the recording functionality on Microsoft Teams, if you do not consent to be video recorded, but are happy to have the audio recorded, we will ask that you switch your camera off for the interview.
• You will be asked to complete a consent form online that will be used only by researchers to confirm you have agreed to take part.
• Picker will use your personal data and responses solely for the purposes of this research.

How your personal data will be kept secure

• All your personal data used and collected for this survey will be stored and processed in the United Kingdom.
• NHS England and Picker comply with the UK General Data Protection Regulation (UK GDPR) and Data Protection Act 2018. NHSE are data controller & Picker are acting as data processor on behalf of NHSE. NHS England’s Privacy Notice (https://www.england.nhs.uk/contact- us/privacy-notice/) describes how we use personal data and explains how you can contact us and invoke your rights as a data subject. Picker also complies with the Market Research Society’s (MRS) Code of Conduct by maintaining certifications from the International Standardisation of Organisations. Any sensitive or confidential material is stored securely in line with our data protection policy.
• Your personal details (name and contact information), as well as the interview recording, will be kept securely and destroyed on completion of the research. Your information will be stored in line with NHS England’s retention schedule, which can be accessed here: NHS England » Corporate records retention and disposal schedule.

How long will your personal data be retained for?

Picker will retain your personal contact details and audio/video recordings of the interview for three months following the completion of the interviews. Any written notes based on your interview will be destroyed12 months following the completion of the project, after deletion of your email address from Outlook, it will be permanently removed from Microsoft servers within 31 days (please note this is separate to any personal data that might be collected within the survey itself – see bullet point above).

NHS England Privacy Notice and information

NHS England’s Privacy Notice (https://www.england.nhs.uk/contact-us/privacy-notice/) describes how we use personal data and explains how you can contact us and invoke your rights as a data subject. We will process your information in accordance with the requirements of the Data Protection Act 2018.

We are collecting / processing personal data about you for the following purpose(s):

• To be able to contact you prior to your interview
• To inform the demographic sample of our research

The information we will collect includes:

• Your contact details (name, email address, postal address and contact telephone number)
• Information about your experiences at the neonatal unit
• Your demographic data such as sex, age, ethnicity

The legal bases for this processing are:

• Where we process your personal data, we use Article 6(1)(e): exercise of official authority
• Where we process special categories of your personal data, including data concerning your health, we use 9(2)(h): management of a health or social care service

We collect your personal data for this purpose from:

• The information you provide us with during the interview
• Picker acting as a data processor on behalf of NHS England

Your rights

• You have the right to access your personal data within the limited period that Picker holds it.
• Providing responses to this study is entirely voluntary and is done with your consent. You have the right to withdraw your consent at any time.
• You also have the right to rectify any incorrect or out-of-date personal data about you which we may hold.
• You have the right to lodge a complaint with the UK’s Information Commissioner’s Office (ICO), if you have concerns on how we have processed your personal data. You can find details about how to contact the Information Commissioner’s Office at https://ico.org.uk/global/contact-us/ or by sending an email to: casework@ico.org.uk.

Requests to access your personal data or invoke your other rights under the Data Protection Act 2018 may be made in writing to NHS England or by speaking to Picker, in which case they will log the request and pass it on to NHS England. All requests will be recorded, and you may need to provide information to verify your identity and enable us to locate the information, including:

• Full name, email address and postal address
• An indication of what information you are requesting to enable us to locate this in an efficient manner

For requests in relation to your personal data held by NHS England, please contact england.dpo@nhs.net

Contact details

If you would like further information on the project, please contact Picker, by either email or telephone:

Email: neonatal.survey@pickereurope.ac.uk

Phone: Contact the Neonatal Survey Team directly on +44 1865 208 159 or +44 1865 208 152

Thank you for taking the time to read this information sheet.