In a world where most of us carry tiny computers everywhere we go, it seems incredible that one of the biggest organisations on the planet hasn’t yet moved into the digital age.
Big data is the latest trend: the key to understanding how the world spins and how society is organised within it. Everyone from the AA to The Guardian, Facebook to Children in Need are investing in and learning from big data.
And the NHS, by virtue of its very nature, should have it in spades.
But while Sainsbury’s can accurately predict your choices based on what bread you like, if you have a health condition the likelihood is you’ll have to recap your medical history to every new healthcare professional you see, and details of what medications you’re on are tucked away on a dusty, dog-eared spread-sheet.
Just imagine how many new treatments could be developed, side effects avoided and conditions identified if the NHS captured data just a fraction as efficiently as your Nectar card.
With NHS budgets under pressure, an aging population, and more people than ever being diagnosed with long-term conditions, all that has to change and the health service has no choice but to embrace technology.
One project I have been following for the last three years is the IBD Registry. It’s a very simple premise – if we knew how many people had inflammatory bowel disease, (IBD) where they are treated and with what, we could provide a better service.
Seems sensible. In fact, many people are shocked this is not how things work already, but, believe it or not, the team behind the IBD Registry are seen as revolutionaries.
Many centres treating this complex condition didn’t even know how many patients they had living in their area, let alone which, if any, of the expensive treatments they were on and if they were receiving all the recommended checks and tests.
Collecting the evidence
The registry, which like many such projects is led by hard-working doctors and nurses in their spare time, is an online database that clinicians fill in during a consultation – it acts as an electronic record of the meeting and replaces the need for paper notes.
It generates a letter at the end of the meeting that summarises everything that’s been decided and it sends a message to the doctor or nurse when vaccines (necessary for those who rely on immunosuppressants to control their condition) are needed.
Last week I went to the third annual update on the initiative held during the British Society of Gastroenterologist (BSG) 2016 conference, and was told it’s on track to become a shining example to all therapy areas – if it can overcome its funding issues.
Funding quality improvement
For the last few years, IBD has been the focus of a Healthcare Quality Improvement Partnership (HQIP), as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). But that money has dried up and, rather than simply stop, the IBD community is going to carry on by themselves.
Hospitals will use the registry as their own quality improvement project, and use the resulting data to continually monitor the care they are providing, benchmark themselves against each other and check they are delivering to the level recommended in the IBD Standards.
HQIP has promised a chunk of “transition funding”, to help merge the QIP audit project into the registry, but after that they are on their own. This is despite the NHS standing to gain the most.
Better patient care, of course, improves the lives of people living with long-term conditions like IBD, but it also saves the NHS, and society at large, huge sums of money.
Up until now, the registry has been partly-funded by the BSG, as well as industry and private donors, but the update meeting was given a stark warning last week.
Dr Ian Forgacs, BSG president, said that was a huge amount of money for any single project and warned it was being “very closely scrutinised” by the society’s trustees.
He went on: “It is vital to the future of the registry that the entire IBD community engages and… enters data and does so during the next few months. Unless we start seeing patients entered in large numbers of NHS trusts it is possible the trustees will say this has no future.”
The challenge now, then, is one of communication and the steering group, and sharing its successes may be the route to doing just that.
At least two research projects are underway via the registry: one seeks to find out the proportion of people with IBD who have iron deficiency anaemia, a common but treatable symptom, and the other is collecting real-world information on a recently-launched new treatment.
Dr Keith Bodger explained the potential: “Any hospital with a web connection can now get involved in research. The registry is a tool for collecting data for all sorts of purposes.
“We will be able to use that to support interventions and quality services. This is a once in a lifetime opportunity.”
Proving your worth
As well as being a useful tool in clinic, the registry is a rich source of big data. It seems so obvious to use the masses of information the NHS has access to improve services, but it isn’t being done anything like on the scale it, arguably, should be.
As anyone who works in or with the health service knows, nothing is a given and every team has to prove every service they provide is efficacious and cost-effective, but they can’t do that without data.
Speaking during the BSG session, an IBD specialist nurse told us she had used information pulled from the registry to show commissioners her Dorset team’s telephone helpline was both needed and cost-effective. The line is now funded for the first time in more than 20 years.
The project has its challenges, which have also included the NHS’ aging IT infrastructure, but the steering group are not about to give up. They are busy working on a model whereby treating centres subscribe to be part of the registry, and once again proving that it is the people at the coalface, not politicians or bureaucrats, who drive the NHS.
Of course, it’s far from the only project of its type getting off the ground at the moment, and many were showcased at the recent, Digital Healthcare Revolution: Harnessing NHS Technology, conference.
Professor Anoop Chauhan, a Consultant in Respiratory Medicine in Portsmouth, for example, used data from GP databases to identify people with asthma and COPD not attending all their recommended monitoring test and checks.
He then invited them to “carousel” clinics, where they were able to see a number of specialists and have all the tests they needed in less than three hours on a Saturday morning. It meant potential problems were identified early, saving NHS resources later down the line and, ultimately, improving patient care.
One of the main barriers to this kind of project is concern over privacy.
The launch of care.data, which aims to create a national database of GP records, was surrounded by controversy. Headlines threatened of insurance companies being given access to our most intimate records for the purposes of profit, and, as of April this year, 1 million people had opted out.
If we are going to entrust our health information to the health service, we need to know it will be safe.
This has been a priority of the IBD Registry team, which has had to offer three methods of data input in order to meet the challenge of different IT systems in different NHS trusts.
“It is perfectly fine and important for all the hospital staff involved in your care to know your personal details. However, once your data leaves the hospital, we have to make sure we safeguard your identity and ensure your details are properly protected,” the registry explains on its website.
They do that by working with NHS Digital (formerly the Health and Social Care Information Centre), which is an NHS-approved data safe haven. They take the data direct from the hospital and extract some of the information to make it “pseudonymised” (almost anonymous) before sending it to the IBD Registry.
As part of the process, NHS Digital removes the NHS number and replaces it with a unique IBD Registry number, but retains a safety file that keeps track of which NHS number matches which registry number.
“In this way, if there is a safety reason or if there is a research project for which you may be eligible, we can ask NHS Digital to get in touch with your doctors,” the team said.
Voyage of genome discovery
Despite all the challenges, we all stand to win from the NHS getting behind big data, as has been shown by the 100,000 Genomes Project, which has already started to produce life-changing results.
Over four years, the project will sequence 100,000 genomes from about 70,000 NHS patients with a rare disease or with cancer, and their families, and it is the largest national project of its kind in the world.
“Researchers will study how best to use genomics in healthcare and how best to interpret the data to help patients. The causes, diagnosis and treatment of disease will also be investigated,” said the project’s website.
This approach gives researchers access to masses of information and that allows them to see links and come to conclusions that may otherwise have been missed. And the results speak for themselves.
Great Ormond Street patients Georgia Walburn-Green and Jessica Wright had rare, undiagnosed, genetic conditions when they joined the project. In January, though they were told that whole genome sequencing had pinpointed the underlying genetic changes responsible for their conditions.
“As well as removing a large amount of uncertainty for the families, the results stand to have a major impact on many areas of their lives including future treatment options, social support and family planning,” said a spokesman for the project.
“They also have the potential to help many more children with undiagnosed conditions who may be tested for these genetic mutations early on and be offered a diagnosis to help manage their condition most effectively.”
It’s projects and initiatives like these that will lead to major leaps forward in health science and innovation. And it’s the people at the coalface, the doctors and nurses who are putting in the hours and the legwork, who are dragging the service into the 21st century.
Our National Health Service offers a unique opportunity to collect data on a unprecedented scale, so let’s make sure the safeguards are in place and get on with it.
Published on: June 30, 2016