Why are we carrying out the National Study of Health and Wellbeing: Children and Young People 2021?
NatCen Social Research and the Office for National Statistics (ONS) have been asked by NHS Digital to carry out this study. NHS Digital is the national provider of information, data and IT systems to the health and care system in England. The study is funded by the Department of Health and Social Care (DHSC) and UK Research and Innovation (UKRI).
This study is following up participants in the 2017 study (digital.nhs.uk/pubs/mhcypsurvey17), and, if they took part, participants in the 2020 study (digital.nhs.uk/pubs/mhcypsurvey2020w1) who said they would be happy to be re-contacted about any future studies. Similar to the 2017 and 2020 studies, this study is about the health and emotional wellbeing of children and young people in England. It is taking place during the coronavirus (COVID-19) pandemic, so some questions about this are included. 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 during the coronavirus (COVID-19) pandemic.
NHS Digital are an executive non-departmental body reporting to the Department of Health and Social Care. NHS Digital has been directed by the Secretary of State for Health and Social Care to collect and process this information. This direction creates a legal obligation for our processing. The lawful basis for collecting this data is the performance of a task carried out in the public interest and a legal obligation on NHS Digital. NHS Digital is the data controller for the study. NatCen Social Research and the ONS are co-data processors. All data is processed in the United Kingdom (UK).
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, we would not be able to change the results by removing individual information. However, you can request that your personal data is deleted at any time by contacting NatCen or NHS Digital using the details below.
Sharing your personal information
We take great care to protect the confidentiality of the information people give us. Your identity will only be known to certain members of the NatCen and ONS research teams and authorised individuals at NHS Digital.
We will handle your 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.
We would like to 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 and made available via the UK Data Service. Researchers and analysts can apply to use the data for research and statistical purposes and applicants will need to meet strict data governance standards approved by NHS Digital Data Access Request Service before access is granted. You can request that your personal data is deleted at any time, by using the contact details provided below.
Linking survey answers to other information?
We will ask for your consent to link your responses to the survey with other data held about your child or you, if you’re aged 17-23, to data held by NHS Digital, the Office for National Statistics and the Department for Education. You can cancel this permission at any time. This would let us add information from health and education records, 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 you agree, your child’s or, if you’re aged 17-23, your name, address and date of birth, but no other information, will be passed to authorised individuals at NHS Digital, ONS and Department for Education. The Department for Education will use this information to identify education records. NHS Digital and ONS will use this information to identify the NHS number so that they can link to health records that they maintain. Both the health and education information will be shared with NatCen, ONS and NHS Digital. If you want to remove your consent you can contact NHS Digital or NatCen via the contact details below and no linkage will be conducted from that point on.
In the future, NatCen, ONS or NHS Digital 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 Digital 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 Digital 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 Digital or NatCen via the contact details below.
Additionally, Kings College London, with University of Cambridge, are planning mental health and wellbeing research involving the use of a mobile phone application. If your child is aged 11-16 or you’re aged 17-23, we will ask for consent to send your name, contact details and your child’s or your month and year of birth to Kings College London. You will be free to refuse to take part in the research when the researchers get in touch. If you change your mind and wish to withdraw your consent, you can do so by contacting NHS Digital via the contact details below.
How long will you keep my data?
We would like to keep anonymous 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 September 2021). You may choose to give us permission to keep your personal details. We’ll ask you about this separately if you choose to take part. You can request that your personal data is deleted at any time by contacting NHS Digital or NatCen via the details below.
For more information about the study you can visit www.natcen.ac.uk/NSHW; and, https://digital.nhs.uk/data-and-information/areas-of-interest/public-health/national-study-of-health-and-wellbeing-children-and-young-people.
If you have any queries about the study please contact NatCen on email@example.com or Freephone 0800 652 4568. You can also contact NHS Digital via firstname.lastname@example.org or Telephone 0300 303 5678.
You can see more about your rights and how we process your data at https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/gdpr/gdpr-register/health-surveys-service-gdpr-information/mental-health-of-children-and-young-people-in-great-britain-gdpr-information
You can contact the NatCen Data Protection Officer by email at email@example.com. 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. You can also contact the NHS Digital Data Protection Officer by email at firstname.lastname@example.org. 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 email@example.com 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.