Every new Health Secretary has to walk a tightrope. They want to leave the NHS in better shape than they found it, but know that grand reforms can backfire badly. Matt Hancock’s time at the Department for Digital, Culture, Media and Sport might give him the angle he needs to succeed — giving NHS patients the power to share their medical records with third parties to make the most of private sector innovation.
Open Banking is doing something similar in consumer financial services, but it’s a model that can work wherever individuals’ data says something unique about them, and third party services that can use that data innovatively can add value to their lives.
For example, it might be useful for diet software to be able to spot that you’ve been treated for symptoms associated with lactose intolerance after a particularly dairy-heavy week, or to combine location data with the knowledge that you’ve been treated for a chronic cough, to spot that it’s being driven by air pollution in areas you’ve been travelling to work through.
Many people are beginning to have their genomes mapped by companies like 23andMe to find markers for health risks like Alzheimer’s. Being able to combine that information with your medical records might allow for much more precise flagging of dangers. Other companies might be able to provide ancillary health monitoring to primary care providers, if those providers considered them reliable. Thriva allows subscribers to do regular fingerprick blood tests on themselves, monitoring things like cholesterol, liver function and blood iron levels. Medichecks offers one-off tests of things like oestrogen and testosterone.
At the most fundamental level, independent providers of care and support that already work with the NHS would find it much easier to access information about their patients’ medical needs and history.
In the longer run, we could begin to learn from people’s activity too. We might be able to spot patterns that we hadn’t noticed before — suppose a diet app began to notice that people who ate a lot of a certain food also had a higher incidence of gastrointestinal problems afterwards. A lot of this information exists already, but it cannot be combined to identify the underlying patterns and causes. Allowing the NHS to access things like patient diet history and genetic profiles could over time be transformational for the healthcare it delivers.
Some of this is stuff the NHS could only do itself if it had near-unlimited resources. The advantage of an ‘Open Healthcare’ approach is that it removes most of the burden of investment and experimentation from the NHS, but still opens the data up to innovators.
The data that is needed is already being collected as patient medical records. The big problem is the collection and storage of those records, which is extremely decentralised, low-tech and non-interoperable. Records are often held in paper form and can be very difficult to access quickly by secondary and community care providers, let alone by smaller healthtech firms that are not part of the traditional NHS ecosystem.
It’s widely acknowledged that digitising medical records should be a priority for the NHS — a recent CPS paper proposing a solution had a supportive foreword from the then-Health Secretary Jeremy Hunt, for example. Integrating health and social care, and primary care with secondary and community care, will require this kind of interoperability. The NHS Data team, led by the Chief Data Operator, is making inroads into the challenge; but their work is often ad-hoc and reactive, and the sharing of data with the patient does not appear to be part of the program.
The politics of a large-scale roll-out of ‘Open Healthcare’ might be tricky, though integrating health and social care is a key aim of both the Conservatives and Labour, and making patient data machine-readable and easily accessible is clearly a basic prerequisite.
But progress can be made right now in a more ad hoc way that doesn’t necessitate a grand NHS-wide solution. Many primary care providers already keep patient records digitally. If an Open Healthcare framework were introduced, then providers could choose to align themselves with it, giving their own patients easy access to their data and the ability to share it securely with third parties.
Data and privacy protections would be critical. The GDPR could be a valuable tool here for encouraging high standards of data security, and punishing companies that misused people’s data. An accreditation scheme could ensure that only appropriately insured and GDPR-compliant firms could access people’s data. More broadly, we might need to limit which sectors can access your data — access by insurers or employers could lead to harmful outcomes for people with chronic medical conditions (or people who were not willing to provide that data, if other healthy people were).
A successful outcome would give patients more control over their care and more insights into their health. And it would reduce the burden on the NHS without undermining any of its key services or imposing significant extra costs. Successes at the local level could then drive wider adoption.
The new Health Secretary understands the power of technology to encourage competition and innovation, and he will want to work with the grain of the NHS rather than against it. That means supporting its core roles while reducing the ancillary care burdens it faces. The prize is enormous — a less burdened NHS, a framework for better integration of ancillary care with primary care, and world-leading framework for combining private innovation with universal healthcare. Now might be the time to do it.