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Getting a 5 million-strong citizen health data program out of the starting gate

Gary Flood Profile picture for user gflood April 18, 2024
Summary:
Tech partnerships and digital skills hailed as critical to getting the UK’s health data program, the equivalent of ‘All Of Us’ in the US, back on track post-pandemic

Silhouettes of people mental health teamwork and communication concept and connected lines with dots © GrAl - Shutterstock
(© GrAl - Shutterstock)

The UK’s largest-ever public health project says external help from Belfast-based Workday partner Kainos has proven critical in it starting to meet its ambitious research targets.

The mission ”Our Future Health” originally aimed to get the voluntary help of five million UK adults by 2025.

A delayed start to the program thanks to the COVID-19 global health crisis has meant this has now been revised to three million volunteers’ data ready for researchers by mid-2027.

They are being asked to share personal information and a blood sample to help develop new ways to prevent, detect and treat diseases like cancer, Alzheimer’s, heart disease, arthritis, diabetes, and stroke.

All donator data is de-identified and then ingested into a TRE (Trusted Research Environment) for use by researchers across the globe - in the Our Future Health case, the DNAnexus data health cloud.

Unless they ask for it to be deleted, volunteer information will be on the system for life.

Key to getting the volunteer program up and running is its technology. This includes the main participant portal and the applications that clinical staff and support services rely on.

A scalable solution allowing blood donors to participate as part of their regular appointments with NHS Blood and Transplant (NHSBT), making it easier for people to take part, also went live in 2023. 

These all run on a combination of Microsoft Azure Cloud services and the Microsoft Dynamics CRM and so successful has the relationship been that earlier this year the vendor was confirmed as digital delivery partner for another year. 

Tight Agile and DevOps collaboration between the partners was critical for rolling out these building blocks, says Our Future Health’s Executive Director of Researcher Data and Product, Kate Evans:

She adds:

From day one our partner has contributed to many aspects of the program - from service design, helping with product management, and providing engineering expertise and resource. 

We haven’t bought an off-the-shelf product here; this is true technology delivery partnership, and it’s that partnership that has really added value for us.

Using NHS legacy to achieve a world-first

Combined with other sources of health and health-relevant information, including genetic data, the aim is to compile a picture truly representative of the UK’s current diverse population, she says, especially people from a range of incomes and ethnic backgrounds.

That’s important, as diversity will identify how diseases begin and progress in people from different communities of health service users.

In many ways, the project is the UK equivalent of the U.S.’s All Of Us but if it meets all its targets, would be 10 times bigger.

Though working in partnership with the National Health Service and several UK health charities like the British Heart Foundation, Our Future Health is being funded directly by central government.

Most recently that was a £51m stake on top of an original £79m fueled by a belief that, thanks to the NHS, the UK is in a unique position to “harness the power of health data to improve patient outcomes.”

Evans agrees:

One of the unique things about the UK National Health Service is that it's got really detailed, longitudinal - so back over a long period of time - picture of people's health in the UK.

And that is quite a unique resource globally; the U.S. doesn't have something similar, so the UK is the ideal place to do a ground-breaking, transformative health research program like this.

The £51m will be used to genotype - build a picture of the genetic constitution - of the first million-plus volunteers.

However, the Life Sciences industry is also a big stakeholder in the organization, which is officially a charity.

So far, £160m has been invested in the idea by organizations like Amgen, AstraZeneca, Pfizer, and Roche.

The importance of a great participant experience

Evans’s focus is on the data coming in from volunteers.

Making sure that data is kept safe and secure is paramount, she stresses, because the trust of the volunteers is what the project stands or falls on.

She says:

They are essentially investing their data in us, with the hope that we will do something magical and change the world with that data, and so help everyone’s future health.

That trust must be accompanied by a great volunteer user experience.

She says:

Because we're really focused on recruiting a very diverse cohort of participants, we needed the technology that underpinned the volunteer experience to be really seamless and intuitive—putting our participants at ease and get us the information in a seamless way.

We also need it to be secure and scalable, because ultimately, we're going to be recruiting 5 million participants and so we need to be building a technology platform that will endure for generations; this isn't a short-term, one-off program - this is creating data and infrastructure that will change people's lives.

So, we needed a technology partner who'd done some of this before. And Kainos had a good track record of building secure and data-centric health projects which had the user and the volunteer and or the patient at the heart.

Our Future Health IT deliverables come from blended customer-partner technology teams, she adds.

She says:

It's very much about flexible and agile and sprint ways of working, where we’re all focused on the outcome that we're trying to achieve, and how we can work together to build the technology to manage the data flows and build the security to enable us to do it effectively and quickly.

The real value of the relationship is helping us with the security, reliability, scalability and trustworthiness of our technology and data architecture.

1.3 million down, 2 million to go?

Pace of accomplishment is also a factor in this.

Though announced in 2020, the fact that as of early 2024 Our Future Health is still a way off that 5 million recruits target can’t be avoided.

Evans says:

It was quite challenging to recruit the number of participants we wanted in the middle of the COVID pandemic.

So, in terms of our participant recruitment, we've only been really motoring fast for probably only the last 18 months.

Seen in that light, the fact that the organization is now up to 1.3 million volunteers is impressive.

Of that number, however, only 600,000 of those are what we call full volunteers or full participant - as in, members of the public who have registered and provided consent, filled in their questionnaire, and made their way into an Our Future Health site to provide their blood samples and have their height and weight taken.

Evans says these numbers could not have been reached after the slow start, without the Kainos-authored volunteer recruitment infrastructure.

An accurate map of the real UK population

Next steps for Our Future Health, she concludes, will be to continue to ask as diverse a set of UK residents as can be reached to meet the program’s goals.

She says:

What is important here is recruiting a participant cohort that really represents the UK. 

When I say that, I mean we are genuinely focusing on the diversity of our cohort; we're making sure that we recruit from black and minority ethnic communities, we're making sure that we recruit from deprived areas, and individuals who to date have been underrepresented in health data research.

That’s because if we can do that, we can enable research into diseases that impact the populations that, so far, the NHS has missed out on.

And that’s because this is research that can change lives.

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