Research programme
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?
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 such as cancer, Alzheimer’s, heart disease, arthritis, diabetes and stroke. Our Future Health is designed to help researchers tackle the growing burden of disease in the UK, so future generations can live healthier lives for longer.
By helping researchers to develop new ways to detect disease at an earlier stage and identify people who are at higher risk of disease, Our Future Health is designed to improve prevention and treatment and ultimately deliver better health outcomes.
You can find a more detailed description of the Our Future Health research programme in our Research Protocol. The protocol covers:
- Background to the programme
- Scientific rationale
- Plan for the main phase
- Development of public-facing materials
- Plan for pre-pilot testing phase
- Plan for pilot studies
Version 3.3 | April 2022 | PDF: 1MB
How will Our Future Health work?
Our aim is to recruit up to five million adult volunteers from across the UK to create an incredibly detailed picture that truly reflects the whole of the population.
People taking part will be asked to provide information about their health and lifestyles and a small sample of their blood.
We ask our volunteers 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 truly reflects the whole of the population. Researchers will apply to study 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 people taking part 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 help researchers explore important questions about the potential uses of new genetic risk scores in health care.
People joining the programme are also being asked to give their permission for Our Future Health to contact them in the future, to give them the opportunity to take part in follow-on research and to offer them personal feedback about their health, if they wish to receive it.
How will Our Future Health support health research?
Our Future Health will give 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 scale, depth and detail of Our Future Health will make it a world-leading resource for health research. The programme is designed to truly reflect the UK population, including groups of people that have previously been under-represented in health research.
Our Future Health 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
- 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.
You can find out more detail about our research programme in our Research Protocol.
Making data available for research
Our Future Health will make data available for research within trusted research environments (TREs), a type of secure data environment. This is in line with best practice, for example the NHS Data Saves Lives strategy.
TREs offer a highly secure computing environment, where researchers can access and work with data subject to clear rules and monitoring, and very strict controls. The controls limit what data can be removed, to minimise the risk that an individual person can be identified. This approach is designed to help to build public confidence that health data is being accessed securely, used appropriately and that people’s privacy is being protected.
The Our Future Health trusted research environment will be the default way for most researchers to study the data we collect. We are working closely with researchers to ensure it is useful for the widest possible range of users, and meets the diverse needs of the community. Our TRE aims to both speed up research, and to maximise the value and potential impact of discoveries on prevention, early detection and treatment of major diseases. There could also be times when the Our Future Health TRE may not be able to meet certain specific research requirements. For example, where organisations have developed complex software or analytical tools that would be hard, or even impossible, to recreate in our research environment. So, in limited scenarios, and where other TREs can meet the same strict standards as the Our Future Health TRE, we will allow other TREs to host the consented, de-identified Our Future Health data to run approved research projects.
We are developing a robust accreditation process to ensure that a trusted research environment hosting Our Future Health data meets the necessary standards of data governance and cyber security, as well as operational, privacy and technical requirements to receive Our Future Health data. This is based on existing, well-established standards and frameworks such as the Office for National Statistics Five Safes framework, the UK GDPR, and international cyber security standard ISO 27001. A TRE must successfully complete this process and achieve accreditation before it can receive Our Future Health data. All research projects must also be approved by our Access Board.
Read more about our approach to providing secure access to data for health research here.
We recently held a consultation on our accreditation process. More information and the draft accreditation documentation can be found here: Our Future Health opens consultation on trusted research environment accreditation process – Our Future Health
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, Asian and minority ethnic communities. It also includes people with lower incomes.
By ensuring that a diverse range of people participate in Our Future Health, we can make discoveries that benefit everyone.
Public engagement
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 advisory panel.
Our outreach and engagement programme is designed to ensure inclusion across people from a wide range of backgrounds, including:
- 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 with the public to develop our protocol
- A co-design group and 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
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:
Source:
https://ourfuturehealth.org.uk/research-programme/
