We’re building a community of up to five million volunteers to create the largest ever health research programme involving members of the public in the UK.
Helping future generations live in good health for longer
Despite advances in healthcare and medicine, large numbers of people in the UK still spend many years of their later life in poor health because of common diseases and health conditions.
Our Future Health is designed to transform the prevention, detection and treatment of conditions such as dementia, cancer, diabetes, heart disease, arthritis and stroke, so future generations can live in good health for longer.
Who can join Our Future Health?
To help all kinds of people, we need every kind of person
Everyone over the age of 18 will be able to take part, from all backgrounds and communities across the UK. It is vital that a diverse range of people join, so we can make discoveries that benefit everyone. We all have something unique to contribute.
At the moment, only a small number of people have joined Our Future Health so we can make sure everything works well, before we invite everyone to take part later this year. We will share details here when we’re ready to ask everyone to join. If you would like us to send you updates you can register here.
What does taking part involve?
If you join Our Future Health, we will build a picture of your health and lifestyle, by asking you to:
- Donate a small sample of your blood – researchers will study DNA information and other natural substances in blood samples, called biomarkers, to discover links to early signs of diseases
- Fill in questionnaires about yourself – these will help researchers identify the earliest signs of common diseases by understanding differences in peoples’ health and lifestyles
- Allow us to securely access your health records – this helps us to identify previous health events and continue to receive updates about your health after you join, including detail that we cannot collect from blood samples or questionnaires, such as X-ray or scan results
Volunteers will also be given the option to receive feedback about their health and the opportunity to take part in additional cutting-edge research studies.
Privacy and data protection
Privacy and data security are of critical importance to Our Future Health. Information that is shared by people who join the programme will be stored securely and used to understand health and disease. Nothing else.
Secure storage of data and samples
We will store and manage data securely in compliance with all applicable data protection laws. All the information we collect will be encrypted and stored according to strict security standards.
The samples will be stored in accordance with the Human Tissue Act. The storage and analysis of all blood and saliva samples will be done at accredited research facilities.
Identifiable data, such as names, addresses and GP details will be removed from samples and health data and stored securely and separately from them.
Only a very limited number of administrative staff at Our Future Health will have access to identifiable data. This is to make it possible for us to re-contact people taking part in the years to come, for example to ask for additional information, to send updates and newsletters about Our Future Health and its progress, and to ask if they want to take part in follow-on research studies.
Researchers conducting approved research studies that only use the data and samples contained in Our Future Health will not have access to participant names or contact details. Names and identifiable information will never be used when the findings from Our Future Health are published and promoted.
Controlling access to information
The Our Future Health charity will be responsible for our volunteers’ data and samples and will control who has access to them.
Researchers from across the life sciences community, including academia, industry and the NHS will be able to apply to study Our Future Health resources. An Access Board including experts and members of the public will oversee access to
- is in line with the consent volunteers have given
- is for public good and aligned to Our Future Health objectives
- that comes from researchers that have successfully completed our registration process
We will never allow access to the data for purposes other than health research that is for the public good. We will never sell or provide personal identifiable data for the purposes of advertising or to insurance companies.
Researchers will access the de-identified data collected by Our Future Health via secure research environments. It will not be possible for researchers to download – ‘walk away with’ – identifiable data.
Some research will involve re-contacting our volunteers to build on the data we have collected. Researchers may want to contact volunteers to take part in follow-on studies, but we will never give people’s contact details to researchers without their permission.
If you have been invited to join Our Future Health and have already registered you can access your account on our participant website.