NSHW Children and young people: Privacy notice

Why are we carrying out the National Study of Health and Wellbeing: Children and Young People 2023?

The National Centre for Social Research (NatCen), the Office for National Statistics (ONS), the University of Cambridge and the University of Exeter have been commissioned by NHS England to carry out this study. NHS England is a Public Body and leads the NHS in England to deliver high quality services for all. Part of NHS England’s role is to collect data about health and health care services and support NHS organisations to work in partnership to deliver better outcomes for our patients and communities. The study is funded by the Department of Health and Social Care (DHSC) and the Department for Education (DfE).

This study is following up participants in the 2017 study and, if they took part, participants in the previous follow-up studies in 2020, 2021 and 2022 who said they would be happy to be re-contacted about any future studies. Similar to the 2017 study and previous follow-up studies, this study is about the health and emotional wellbeing of children and young people in England. The study will look at the experiences of children and young people during the past year. The results will be used by the NHS, policy makers and charities to understand more about the health and wellbeing of children and young people in England.

The controller of your personal data

NHS England is the controller of your personal data under the UK General Data Protection Regulation 2016 (GDPR). NHS England has been directed by the Secretary of State for Health and Social Care to collect and process this information under the Mental Health and Wellbeing Surveys Directions 2021.

NHS England is a Joint Controller with the Secretary of State in relation to determining the purposes for processing personal data collected and analysed relating to the Mental Health and Wellbeing Survey Directions 2021. NHS England is the sole controller that processes personal data through collecting and analysing personal data and disseminating personal data it holds under the Directions. It is also the sole controller in relation to determining who data may be shared with and for what purposes when exercising its discretionary dissemination powers under section 261.

The National Centre for Social Research (NatCen), the ONS, the University of Cambridge and the UK Data Service are co-data processors. All personal data is processed in the United Kingdom (UK). 

Where we process personal data as part of our statutory functions, this is part of our public task. We are allowed to do this under Article 6(1)(e) of GDPR. 

We may process personal data under Article 9(2)(j) if processing is necessary for Research and statistics supplemented by the Data Protection Act 2018 paragraph 4: Schedule 1.

Do I have to take part?

Taking part is voluntary. The success of the study depends on the goodwill of those asked to take part. The more people who do take part, the more useful the results will be.

You are free to withdraw from the study at any time. Once the study results have been published and the anonymised dataset created, we would not be able to change the results by removing individual information. However, you can request that your personal data that we hold is deleted at any time by contacting NatCen or NHS England using the details below.

Sharing your personal information

We take great care to protect the privacy of the information people give us. Your identity will only be known to certain members of the National Study of Health and Wellbeing research teams at NatCen and ONS and authorised individuals at NHS England and the UK Data Service.

We will process your personal data in accordance with data protection legislation. The study report will be anonymised - results will not be presented in a form which reveals your identity.

You are free to withdraw from the survey at any time. You can request that your personal data such as names and addresses and your answers to the interview questions, are deleted at any time, by using the contact details provided below. However, once the survey results (which do not identify you) have been published we would not be able to change the results by removing individual information.

We will keep anonymised information from the study permanently, so researchers can make use of it for many years to come. A copy of the survey dataset which does not include information that could directly identify you is created. The dataset is available to researchers in the UK, EEA or those from a country with a suitable adequacy agreement. Data access requests from researchers from other countries who do not meet either of those criteria will be reviewed by NHS England on a case-by-case basis. Researchers are required to demonstrate their research will be of material benefit to health and social care.

Linking survey answers to other information?

We will ask for your consent if your child is aged 8-15, ask for both your and your child’s consent if your child is aged 16, or ask you if you are aged 17-25, to link your responses to the survey with other data about your child, or about you if you’re aged 17-25, that is held by NHS England, the Office for National Statistics (ONS) and the Department for Education. You can cancel this permission at any time. This would let us add information about health and education, where lawful to do so, to look at how a person’s lifestyle and experiences can have an impact on their future health and education. This includes in-patient/out-patient care, primary care, diagnostic care, mental health, cancer, records for when and the reason why people pass away, educational achievement, absence, exclusions and special educational needs.   

If your child is 16 years old at 31st August 2023, we will also ask your child for their consent to link some of their NHS health information and education information with both their and your survey responses. We will only link some of your child’s NHS health information and education information with your survey responses if you both agree.

If you do not agree but your child does, we will only link your child’s NHS health information and education information with your child’s survey responses.

If your child is aged 8-15 and you agree, or your child is aged 16 and they agree, then your child’s, or if you’re aged 17-25 then your, name, address and date of birth, but no other information, will be passed to authorised individuals at NHS England, ONS and Department for Education. Department for Education will use this information to identify education records. NHS England and ONS will use this information to identify the NHS number so that they can link to health information that they maintain. Both the health and education information will be shared with NatCen, ONS, the UK Data Service and NHS England for research and statistical purposes only. If you want to remove your consent you can contact NHS England or NatCen via the contact details below and no linkage will be conducted from that point on.

Access to the data for other qualified researchers can only be granted by the NHS England’s, Data Access Request Service (DARS). The information will be completely confidential and will be used for research purposes only by academic or policy researchers under restricted access arrangements which make sure that the information is used responsibly and safely. All researchers will need to comply with data protection legislation and assure us they have organisational and technical controls in place.

Follow-up studies?

In the future, NatCen, ONS or NHS England may want to contact you about follow-up research on mental health and wellbeing. We will only invite you to take part in follow-up research if you give consent for this. NHS England will carefully review all proposals from researchers/organisations to conduct follow-up research before giving approval. We will not pass on any of your details without your permission. NHS England will not approve any requests that are for commercial use. If you are invited to take part in any future studies, you will be free to refuse if you do not want to take part. If you want to remove your consent at any time you can contact NHS England or NatCen via the contact details below.

How long will you keep my data?

We will keep anonymised information from the study and linkage (if consented) permanently, so researchers can make use of it for many years to come. We will delete all names and addresses 3 years after the end of the study (the study ends in October 2023). You may choose to give us permission to keep your personal details for follow up research or consent to link information. We’ll ask you about this separately if you choose to take part. You can request that your personal data is deleted or your consents removed at any time by contacting NHS England or NatCen via the details below. If you do ask for your data to be deleted we will not be able to remove your survey responses from the anonymised dataset or any publications, but we will not process your data from that point forward.

Any questions?

For more information about the study you can visit www.natcen.ac.uk/NSHW; and the NHS England website.

If you have any queries about the study please contact NatCen on nshw@natcen.ac.uk or Freephone 0800 652 4568.

You can also contact NHS England via enquiries@nhsdigital.nhs.uk or Telephone 0300 303 5678.

To read more about the health and care information NHS England collects, our legal basis for collecting this information and what choices and rights you have, see how we look after your health and care information, our general transparency notice and the mental health of children and young people in Great Britain UK GDPR information.

You can contact the NatCen Data Protection Officer by email at dpo@natcen.ac.uk. To read our data protection policy, visit www.natcen.ac.uk.

The ONS data protection policy can be found by visiting www.ons.gov.uk/dataprotection and the UK Data Service privacy policy by visiting www.ukdataservice.ac.uk/privacy-policy.

You can also contact the NHS England Data Protection Officer by email at england.dpo@nhs.net. Data Protection Officers are responsible for upholding your rights and making sure we process your information correctly.

If you have a complaint, please get in touch by contacting NatCen on nshw@natcen.ac.uk or Freephone 0800 652 4568. You also have the right to lodge a complaint with the Information Commissioner’s Office at: Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF, telephone 0303 123 1113, https://ico.org.uk/concerns.