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Children’s cancer or tumour care

Workshops to hear your views on how results should be presented for a new Under 16 Cancer Patient Experience Survey.

Project title: Under 16 Cancer Patient Experience Survey
Lead researchers: Megan Bilas and Juan Abad Madronero at Picker, on behalf of NHS England

Background
Picker, an independent health and social care research charity, has been instructed by NHS England to develop and carry out a new cancer patient experience survey for children aged under 16 and their parents/carers. The goal of the survey is to understand and improve the experiences of children’s cancer and tumour care in England.

We have recently completed survey development and are now examining ways that the survey results can be presented and used. As part of this process, we would like to speak with children who have received cancer or tumour care, and their parents/carers.

What are we doing?
We will be hosting online workshops in late October and early November with:

  • A small group of 8-11 year old children who have received cancer or tumour care
  • A small group of 12-15 year old children who have received cancer or tumour care
  • A group of parents/carers of children between the ages of 0-15 who have received cancer or tumour care

During these workshops, we will be asking participants about the type of survey information they would like to see reported. For instance, whether there are some sections of the survey that they are more interested in or if they would like to see results broken down by certain groups such as age or gender. We will also be asking participants about their preferences on some different designs that might be used for presenting results. The workshops will be made up of interactive exercises and group activities.

For the children’s workshops, while parents/carers are welcome to join, it is primarily the child’s view that will be sought. Parents/carers are welcome to indicate their interest in taking part in the separate workshop focused on collecting feedback from parents/carers.

The workshop for 8-11 year olds will be 60 minutes long. The workshop for 12-15 year olds and for parents will each be 90 minutes long, with a short break. We will be asking interested participants for their availability and will decide on a date/time that suits most.

All participants will receive their choice of a £40 Amazon or Love2Shop voucher as a thank you for their time.

Who can take part?
You can volunteer if:

  • You are a parent/carer of a child aged 0-15 years old who has received care for cancer or a tumour in England in the last 12 months, within the NHS.
  • You are an 8-15 year old child who has received cancer or tumour care in the last 12 months.

Do I have to take part?

  • No – participation is voluntary, it is up to you whether you or your child take part.
  • You or your child can decide not to take part at any time – even after the workshop has started, without giving a reason.
  • Whether or not you or your child decide to take part will not affect the care or support your child receives now or in the future, in any way.

Would my participation in this study be kept confidential?

  • Yes – what you or your child say will be kept entirely confidential. The workshops will not be recorded. Care providers will not know who takes part.
  • No identifying information (such as names) will be shared with anyone who provides care to your child.
  • 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 you or your child have agreed 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 share during the workshop will be used to guide decisions on how to structure the results of the Under 16 Cancer Patient Experience Survey for members of the general public.

Your personal details (name and contact information) will be kept until the publication of the results is complete in case we need to follow up with you on the feedback you provided during the workshop, after which they will be securely destroyed. You can request that your personal details are securely destroyed earlier than this by emailing Juan or Megan at take_part@pickereurope.ac.uk or calling our Freephone number at +44 (0) 800 197 5273.

NHS England and Picker comply with the General Data Protection Regulation (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.

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 about NHS England, please visit www.england.nhs.uk/.

Ready to take part or do you have more questions?
Please fill in the following form to indicate your interest in taking part: https://picker.fra1.qualtrics.com/jfe/form/SV_6Js5g7SgcxBPAMt

Please contact Juan or Megan at Picker on +44 (0) 800 197 5273 or at take_part@PickerEurope.ac.uk if you have any questions.

Privacy Notice
NHS England’s Privacy Notice (https://www.england.nhs.uk/contact-us/privacy-notice/) describes how NHS England 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.

If you have any questions or concerns, please contact the NHS England Insight & Feedback team: england.insight-queries@nhs.net.

If you have any questions relating to data protection, please contact the NHS England’s Data Protection Office: england.dpo@nhs.net.

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/.

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