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How we invite people to join the Our Future Health research programme

Find out how we invite people to take part in the Our Future Health research programme and how to opt out if you do not wish to receive an invitation letter from NHS Digital.

What is the Our Future Health research programme?

Our Future Health will be the UK’s largest ever health research programme. It is designed to help people live healthier lives for longer through the discovery and testing of more effective approaches to prevention, earlier detection and treatment of diseases.

Our Future Health will invite millions of people, from all backgrounds and from right across the UK to take part. Volunteers will provide information about their health and lifestyles to create an incredibly detailed picture that represents the whole of the UK.

By developing a more detailed understanding of what makes certain people more likely to develop a disease - plus what to look out for before any symptoms appear - Our Future Health has the potential to help to develop far more effective approaches to both prevention and treatment.

You can learn more about the programme and who is eligible to take part on the Our Future Health website.

The programme will invite people from across the UK to take part.  You do not have to accept the invitation.

If you do not wish to receive an invitation letter from NHS Digital you can opt out of being invited below.

How NHS Digital uses your information

NHS Digital has been asked to identify people who are eligible and to invite them to join the Our Future Health research programme. We will use the data we hold to identify suitable people and send them an invitation to take part. The data used will include name, date of birth, address, and NHS number. Your personal data will not be shared directly with the research programme.

The research programme has requested that all eligible people be contacted once only. To manage the invitation process, we will need to keep the list of people who have been invited until six months after the research programme recruitment is complete. This is to ensure that you are not invited if you have told us you do not want to be contacted, and that no one is invited more than once.

After this time, all the information stored for the purpose of this research programme will be deleted. You can find out more about your choices on how the NHS uses your data for research and planning.

We will use your data to produce summary reports to monitor recruitment into the research programme (for example how many people were invited). These reports will not identify you personally.

As an executive non-departmental body reporting to the Department of Health and Social Care most of our processing activity is directed by the Secretary of State for Health and Social Care.  NHS Digital is Directed under the Pilot NHS DigiTrials Recruitment Support Services Directions 2021 to process data to identify potentially eligible participants to take part in the programme.

Additionally, the Health Research Authority has provided legal support to the Our Future Health research programme under Section 251 of the NHS Act 2006 and Regulation 5 of The Health Service (Control of Patient Information) Regulations 2002 which enable the common law duty of confidentiality to be temporarily lifted so that confidential patient information can be processed by NHS Digital on behalf of the programme. This support provides the legal basis for suitable participants to be invited to join the research programme. This is following advice from the Confidentiality Advisory Group, an advisory body which provides independent expert advice on the use of confidential patient information without consent in England and Wales.

If you have requested that your NHS data is not shared for research and planning purposes (by registering a National Data Opt-out) then you will not receive an invitation for this research programme.

If you decide to take part, you will be asked to provide consent to the research programme via a website.

Your rights over your personal data

To read more about the health and care information NHS Digital 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, and our general transparency notice and the related GDPR register entry.

You can opt out of receiving an invitation

If you do not want to be invited by NHS Digital to take part in the Our Future Health research programme, please complete our online opt-out form or call our contact centre on 0300 303 5678.

In the future you may be approached by other organisations to join the Our Future Health research programme, but NHS Digital will not invite you. You will always be able to choose if you wish to volunteer.

NHS Digital processes and holds the Opt-Out List on behalf of Our Future Health.

If you've previously opted out of sharing your health data for planning and research purposes by submitting a National Data Opt-out, you do not need to take any action. You will not be invited to take part in this research programme by NHS Digital.

Further information

Last edited: 30 June 2022 4:41 pm