UK patient data project reaches one million volunteers

Just a year after it was launched, the UK’s Our Future Health research programme has signed up its millionth volunteer, a fifth of the way to its target of five million.

The NHS-led project is collecting and linking genetic and other health data, including medical records, for those who sign up for the project and is being funded by the government, patient organisations, and the life sciences industry.

The ultimate aim is to “enable researchers to find breakthroughs that help revolutionise the way we detect, treat, and prevent disease,” according to the study organisers, who say it is the largest-ever medical research project undertaken in the UK, with a funding target of almost £240 million (around $300 million).

Professor Sir John Bell, chair of the programme, told the BBC this morning that even at this stage it is throwing out some important findings, including for example higher-than-expected levels of uncontrolled high blood pressure and cholesterol in the population, including in younger people, in tests on the first 100,000 volunteers.

That’s right in line with the project’s goal of tackling the ‘growing burden of disease’ in the UK, given data suggesting that 59% of people aged 65 or older have two or more chronic conditions or impairments.

“We’re quite concerned there is actually quite a lot of ill-health in the population that could be very easily managed,” he said. “With thousands more people joining every day, we can now be very confident Our Future Health will become the most powerful research tool we’ve ever had to tackle chronic diseases.”

The hope is that it will “enable discoveries that help us change our health system from one where we mostly treat people who are already sick, to one where we can do much more to stop people becoming sick in the first place,” added Prof Bell.

Our Future Health is currently attracting around 3,000 sign-ups a day, with those enrolled filling out an online questionnaire and attending pop-up clinics or pharmacies where they give a blood sample and have some physical measurements taken.

They are also offered information about their own health, including their blood pressure and cholesterol levels, and in future can receive feedback about their risk of some diseases and have the chance to take part in further research if desired.

There is a concerted effort to encourage enrolment from a wide range of socioeconomic backgrounds and ethnicities, including groups that are known to be under-represented in healthcare research.

“While the breakthroughs of the past were often due to the brilliance of individuals, the breakthroughs of the future will rely on a large group of people who are united by their collective determination to play their part in making positive change,” said Dr Raghib Ali, the programme’s chief medical officer.

“Each one of those million volunteers is contributing to creating a world-leading resource that will lead to discoveries that will save lives.”

Photo by Anna Dziubinska on Unsplash.