Our Future Health aims to 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.
Why is Our Future Health important?
Today, millions of people in the UK and around the world spend many years of their later life in poor health. Our Future Health is designed to find out as much as possible about how health changes as people age, so we can track back to find the earliest signs of common diseases such as dementia, cancer, diabetes, heart disease and stroke.
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 disease detection, prevention and treatment.
How will Our Future Health work?
Our aim is to recruit up to five million adults from across the UK to take part in Our Future Health. Participants will be asked to provide information about their health and lifestyles and small samples of their blood and/or saliva.
We will ask for permission to combine the information and samples that they give us with existing information about them, including their health records. Adding these additional types of information will help to build a more comprehensive picture of health and wellbeing that could be relevant to understanding what changes people’s risk of disease.
Combining these multiple sources of health and health-relevant information, including genetic data, will create an incredibly detailed picture that represents the whole of the UK. Researchers will use this information to make new discoveries about human health and diseases.
We will use the health information, including genetic data, to calculate disease risk scores for participants in Our Future Health where possible. Based on these risk profiles, it might be possible to better target individuals who are at higher risk of developing certain diseases. This will provide an opportunity to test the potential of new diagnostic tests or treatments as they are discovered and to see how effective they could be for people at higher risk of certain diseases. This will also mean Our Future Health can facilitate research addressing important questions about the potential uses of new ‘genetic risk scores’ in health care.
How will Our Future Health support health research?
Our Future Health will be a resource that gives researchers from universities, charities, the NHS and companies involved in health research an opportunity to discover and test more effective ways to predict, detect and treat common diseases such as dementia, cancer, diabetes, heart disease and stroke.
The depth and detail of Our Future Health will hopefully make it a world-leading resource for health research. It may hold the key to huge numbers of discoveries, such as:
- New signals that could be used to detect diseases much earlier than is currently possible, leading to new or improved screening and prevention programmes and earlier treatment;
- New ways to predict with better accuracy who is at higher risk of diseases and would benefit from faster access to screening and prevention interventions; and
- More targeted or personalised treatments, tools and technologies to delay the onset of disease, or change the course of disease progression; to reduce disease risks; and more targeted ways to investigate diseases for people at higher risk.
The intention is that the Our Future Health programme will provide two key types of resource for health research:
- A prospective observational dataset for basic science/epidemiological, discovery and aetiological research e.g. on the causes and early signs of disease; and
- A translational research platform comprising a cohort of people who can be re-contacted for translational/implementation research to develop and test new diagnostic technologies, prevention strategies and treatments.
The research protocol is a full description of the Our Future Health study. It acts as a detailed set of instructions for our research team to ensure everyone adheres to an approved process. As the programme gets underway, we will use the Protocol to monitor progress and evaluate our outcomes.
The full Protocol for the Our Future Health research study will be available for download here shortly.
Diversity & inclusion
Our Future Health is committed to building a resource that truly reflects the UK population, so that we can identify differences in how diseases begin and progress in men and women from different backgrounds.
It is vital that a diverse range of people join Our Future Health, so we can make discoveries that benefit everyone. In the past, some groups have not had enough representation in health research. This includes people from black communities, Asian communities and people from other minority ethnic groups. It also includes people living in less wealthy parts of the country. This means that the medical advances made from past research may not benefit everyone equally.
Members of the public have been and will continue to be centrally involved throughout the life of Our Future Health. This involvement includes focus groups, interviews, and a public involvement advisory panel.
Our outreach and engagement programme is designed to ensure inclusion across people from a wide range of backgrounds, including:
- Black and minority ethnic groups
- UK regions & devolved nations
- People with low incomes/resources
We have involved members of the public in the design and development of the public-facing materials as well as in other aspects of the project design. To date, this has included:
- A co-design group, 4 focus groups and 21 interviews with the public to develop our study protocol
- A co-design group and 16 focus groups with the public to develop our participant information sheet and consent form
- Interviews with stakeholders from charities and existing cohort studies and focus groups with NHS primary care staff
Privacy and data protection
Privacy and the data security are of critical importance to Our Future Health. The Our Future Health charity will be responsible for participant data and samples and will control who has access to them.
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.
Protecting participants’ identity
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 contact participants again 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 invite people to take part in individual 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
Researchers will access the data collected by Our Future Health via a secure research environment. It will not be possible for researchers to download – ‘walk away with’ –identifiable data, unless participants have given us permission for them to be contacted.
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.
If participants give their permission, their names and contact details may be shared with researchers who want to collect more information or samples, as part of approved research studies.
Ethics and Governance Framework
Our Future Health established an Ethics and Feedback Advisory Group to develop an Ethics and Governance Framework to guide its operations. This framework document covers:
- The balance between research and care
- Public and participant involvement
- Recruitment and consent
- Recontact and the provision of individual health-related information
- Data stewardship, governance, advisory and control structures
- External partnerships
Version 2.0 | April 2021 | PDF: 514kb