Millions of invitations go out this autumn for UK’s largest health research programme
Over three million letters are being sent out this autumn inviting members of the public to join Our Future Health, a major new health research programme designed to help develop new ways to prevent, detect and treat diseases.
Eventually up to five million people will have the opportunity to join Our Future Health over the next few years, which will make it the UK’s largest ever health research programme open to all UK adults.
By analysing health data and blood samples from millions of volunteers who join the programme, researchers could unlock new ways to detect diseases earlier when they can be treated more easily, and more accurately predict who is at higher risk of diseases such as cancer, diabetes, heart disease, dementia and stroke.
A recent survey* of over 2,700 UK adults commissioned by the programme found that 75% of people agreed that taking part in Our Future Health could lead to better medical treatments and 78% agreed that taking part could lead to better ways to detect diseases early.
Volunteers joining the research programme will be given the option in the future to receive feedback about their health, including their risk of common diseases, based on their health data and analysis of their DNA. They will also be offered the results from blood pressure and cholesterol measurements. The survey* found that almost 80% of people would be interested in receiving feedback about their risk of preventable health conditions based on their genetics.
The research programme provides an opportunity to explore the potential uses of genetic risk scores in health care, and how they may improve screening programmes, diagnostic tests for earlier detection and targeted treatments. Volunteers will also have the option to take part in cutting-edge research studies in the future.
Some people have previously been under-represented in health research, including people from Black, Asian and other ethnic backgrounds and people with lower incomes. The Our Future Health programme is aiming for 5 million volunteers who truly reflect the UK population. By ensuring that a diverse range of people take part, it aims to enable discoveries that can be made that benefit everyone.
Head of Research at Pancreatic Cancer UK, Dr Chris MacDonald, said:
“Information collected through this exciting initiative will provide valuable insight into the health of the nation over time, enabling us to learn more about a wide range of diseases, including pancreatic cancer, and study the signals present in blood samples even many years before diagnosis. This is particularly exciting for us as pancreatic cancer is frequently detected too late for treatment, with over 80% of people diagnosed in the late stages. The insights gained through Our Future Health will be invaluable and will doubtless help to improve early diagnosis and save lives.”
Dr Raghib Ali OBE, Chief Medical Officer of Our Future Health, said:
“Today, millions of people spend many years of their life in poor health and too often we are only able treat diseases when our patients start showing symptoms. Volunteering to join Our Future Health is an opportunity to change that. With the help of up to five million people, we’ll be able to dramatically improve our understanding of how to detect and prevent diseases so in the future everyone can live in good health for longer.”
Working in collaboration with NHS DigiTrials, the programme is sending invitation letters this autumn to people over 18 who live in four regions: West Yorkshire, West Midlands, Greater Manchester and Greater London. Volunteers will give their consent to join the research programme and provide secure access to their health records, complete a questionnaire and book an appointment to provide a small blood sample and have some physical measurements taken.
People outside of these regions can also join the programme now and book an appointment when more locations are added in the coming months.
Notes to editors:
About Our Future Health
Our Future Health is a collaboration between the public, private and charity sectors. It aims to be the UK’s largest health research programme, bringing people together to develop new ways to prevent, detect and treat disease.
Our Future Health is committed to the highest standards, policies and processes that protect participants’ confidentiality, whilst maximising the opportunity to help researchers to tackle serious diseases. Participants’ data will be de-identified and held securely in trusted research environments that meet strict security criteria. There will be a robust and transparent access process to ensure appropriate research access to Our Future Health data and samples for registered researchers. All researchers will be held to the same standards.
Our Future Health is a member of the UK Health Data Research Alliance, the independent alliance of leading healthcare and research organisations establishing best practice for the ethical use of UK health data for research at scale.
Our Future Health is a company limited by guarantee registered in England and Wales (number 12212468) and a charity registered with the Charity Commission for England and Wales (charity number 1189681) and OSCR, Scottish Charity Regulator (charity number SC050917).
About NHS DigiTrials
NHS DigiTrials, hosted by NHS Digital, offers data services to support clinical trials. We help reduce the time, effort and cost of developing new drugs, treatments and services, bringing benefits to patients, the public and the NHS.
Opt-out from receiving an invitation – People who have previously opted out of sharing health data for planning and research purposes, by submitting a National Data Opt-out, will not receive an invitation letter to join the programme via NHS Digital (who host the NHS DigiTrials service). People who do not want to receive an invitation letter from NHS Digital can opt out by completing the form on the NHS DigiTrials webpage.
*Figures from a UK-wide national survey of public attitudes towards Our Future Health and other relevant topics conducted by Kantar Public in May-June 2022. The survey was completed online or by telephone by 2,763 members of the public from across the four nations of the UK.
The survey found that over two thirds (69%) of people understood the benefits of taking part in a health research programme such as Our Future Health. Overall, 79% agreed that taking part in Our Future Health could lead to better ways to detect diseases early; 78% that it could lead to better medical treatments; 76% that it could advance medical research; and 73% that it could help other people in the UK.
The results also showed that 78% would want to receive personal genetic information about their risk of preventable, serious diseases if they took part in Our Future Health; and 65% would want personal genetic information about their risk of serious diseases that are not preventable.
A detailed summary of the research and findings will be published at www.ourfuturehealth.org.uk/news