Share your thoughts on our new gender questions
Project title: Gender survey question testing.
Lead researcher: Caroline Hancock at Picker, on behalf of NHS England.
Who is organising the research?
The research is being organised by NHS England, an organisation that leads the National Health Service (NHS) in England. For more information, please visit www.england.nhs.uk/.
If you have any questions about the research, before or after the interview, please get in touch with the following contacts at Picker:
- To let us know if you would like to take part and to check your eligibility, please complete our short online survey here.
- Or call Caroline, Bernardine or Cara at Picker on +44 (0) 800 197 5273;
- Or email us at firstname.lastname@example.org stating ‘gender and sex questions; cognitive interviews’ in your email.
What are we doing?
Picker, an independent health and social care research charity, and NHS England have developed an Under 16 Cancer Patient Experience Survey to understand and improve experiences of children’s cancer and tumour care in England.
We have developed new questions asking people about their gender and sex and we need help from individuals to test these questions and make sure that they are clear, inclusive and easy to complete.
Who can take part?
Your child can volunteer if they are aged between 8-18 years.
Your child does not need to have had cancer to take part, as we will only be testing the gender and sex questions in the survey.
Interviews will be conducted with your child via video calling on your computer, phone or tablet device using an app called Microsoft Teams or over the telephone (we will ask you which method you would prefer to use). The interview will take no longer than 15-20 minutes. At the end, a thank you of a £60 Amazon or ‘Love2Shop’ voucher per interview will be given. Interviews won’t be recorded. Picker will need to gain consent from parents of those under the age of 16 who wish to take part.
Do we have to take part?
- No – participation is voluntary; it is up to you and your child whether 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.
Would our participation in this study be kept confidential?
- Yes – what you kept entirely confidential.
- No identifying information (eg your name) will be recorded or shared with anyone.
- We will only ever report your views anonymously.
- You will be asked to sign and complete a consent form that will be used only by researchers to confirm that you agree for your child to take part.
- Your personal information will not be shared with anyone unless required by law, where there is a clear overriding public interest, or if something you say indicates that you or your child are at risk of immediate harm.
What will happen to the information that I share?
The information that you and your child share will be used to test and improve two gender questions within a cancer and tumour patient experience questionnaire for children and parents. The survey will be used nationally by NHS England to understand and improve patient and parent/carer experiences of children’s cancer and tumour care. Please note that the comments you provide will be looked at in full by the researchers analysing the data. Any information that could identify you will be removed before publishing any of your feedback.
NHS England and Picker comply with the UK General Data Protection Regulation (UK GDPR). 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) and all completed questionnaires from the interviews will be kept until the survey development is complete, after which they will be securely destroyed. They will only be used for the purpose of this project.
NHS England’s Privacy Notice (https://www.england.nhs.uk/contact-us/privacy-notice/) describes how NHS England uses 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.
If you have any questions or concerns, please contact the NHS England Insight & Feedback team: email@example.com.
If you have any questions relating to data protection, please contact NHS England Data Protection Office: firstname.lastname@example.org.
You have the right to make a complaint against NHS England regarding data protection issues with the Information Commissioner’s Office: https://ico.org.uk/concerns/.