National Study of Health and Wellbeing: Privacy notice
We take great care to protect the confidentiality of the information people give us.
Why we carry out the survey
This survey collects information on the prevalence and context of mental health conditions among the adult population in England. It is led by NHS Digital, funded by the Department for Health and Social Care, and conducted by NatCen Social Research (NatCen) and the University of Leicester.
NHS Digital is sponsored by the Department of Health and Social Care and is the national digital, data and technology delivery partner for the NHS and social care system in England. NHS Digital is also responsible for commissioning datasets and works closely with NHS England, The National Information Board, and other key agencies in the NHS and social care environment in England. In early 2023, NHS Digital will be merging with NHS England.
Why we process your information
These surveys of the general population have been carried out in 1993, 2000, 2007 and 2014. Following each survey an official statistics report is published along with data tables and a survey dataset is created and archived with the UK Data Service.
We need information about the health and wellbeing of adults in England to help the NHS, policy makers and charities make the right decisions about important issues like health, social care and employment.
NHS Digital is the controller of your personal data under the UK General Data Protection Regulation 2016 (GDPR). NHS Digital 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 Digital 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 Directions Mental Health Survey Directions. NHS Digital 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.
NatCen Social Research, the University of Leicester and the UK Data Service are co-data processors. All personal data is processed in the United Kingdom (UK).
Do I have to take part?
Taking part is voluntary, as with all our surveys, therefore, the success of the survey depends on the goodwill and commitment of those taking part. Naturally the more people who do take part the more useful and valuable the results will be. You are free to withdraw from the survey at any time.
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 NatCen and University of Leicester research teams and NHS Digital.
We will process your personal data in accordance with data protection legislation., and only where necessary for the purposes of the survey. The survey report is anonymised - results will not be presented in a form which reveals your identity. We would only have to tell someone else what you say if, during the interview, you tell us about possible harm to yourself or others.
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 Digital on a case-by-case basis. Researchers are required to demonstrate their research will be of material benefit to health and social care.
You are free to withdraw from the survey at any time by contacting NatCen or NHS Digital via the contact details below. You can request that your personal data such as names and addresses and your answers to the interview questions, are deleted at any time. 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.
Linking survey answers to other information
We will ask for your consent to link your survey answers with your NHS information held by NHS Digital. This lets us add information to survey answers about in-patient/out-patient care, primary care, diagnostic care, mental health, , specific health conditions such as cancer, and details about dates and causes of death. Full details regarding the information used to link data and what it is linked to is provided to all participants as part of the consent process.
Your personal data will only be accessed by certain members of the NatCen and University of Leicester research teams and NHS Digital. Access to the data for other qualified researchers can only be granted by the NHS Digital’s, Data Access Review 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.
Follow-up studies?
In the future, NatCen or NHS Digital may want to contact you about follow-up research on health, mental health or health services. We will only invite you to take part in follow-up research if you give written consent for this. If you are invited to take part in any future studies you are free to refuse.
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.
How long will you keep my data?
The National Study of Health and Wellbeing has been running since 1993 and gives us very important information about how people’s mental health has changed over time the data in this study is kept indefinitely, so we can look at trends over time. You can request that your personal data is deleted at any time. For information on how the National Study of Health and Wellbeing uses your data and how this complies with data protection legislation, please click on the following:
Adult Psychiatric Morbidity Survey: GDPR information
The UK Data Service privacy policy can be found by visiting www.ukdataservice.ac.uk/privacy-policy and the University of Leicester privacy policy by visiting https://le.ac.uk/policies/privacy
Contact us
If you have any queries, or want to request that we change or delete your information contact us:
Sarah Butt, Research Director
Kings House, 101-135 Kings Road,
Brentwood, Essex, CM14 4LX
Tel: 0800 652 4572
Email: wellbeingsurvey@natcen.ac.uk
NHS Digital Data Protection Officer
Email: nhsdigital.dpo@nhs.net
Data Protection Officers are responsible for upholding your rights and making sure we process your information correctly.
If you would like to complain to the Data Protection Regulator, you can contact:
Information Commissioner’s Office
Wycliffe House, Water Lane,
Wilmslow
SK9 5AF
Email: www.ico.org.uk/global/contact-us/email
Website: www.ico.org.uk/