NHS Wales shapes up ambitious plans for digital patient-facing app

Sharing medical records

Exactly what the app will look like is still being decided, but Lewis says that from speaking to patients, it is clear they want to be able to see and share key parts of their medical records.

“It might at the beginning look like a summary care record and key documents, like an advanced care plan,” she says. “So we might start with that.

“We also want to enable remote care. Patient reported outcome measures (PROMs) are a structured assessment of symptom burden and therefore are very useful for supporting remote care, and they link beautifully to appointment management.”

Lewis explains that if a GP has referred a patient to hospital, the patient should be able to check whether this has been done, see the referral letter and where they are on the waiting list.

Appointment management and prescription management will also be key parts of the app, alongside test results.

Despite the drive to create this digital access to NHS services, Lewis and the rest of the programme board are mindful not to leave anyone behind.

“We’re very mindful, of course, that not everybody wants to use or can use technology, so looking at digital exclusion is something that we’re doing,” she says.

“But we also genuinely believe that if we are supporting patients who can use technology to have fewer face-to-face appointments and a lighter touch to their chronic disease management, we will support their self-management to an extent that they will need to utilise healthcare less, which gives more time for those who are not digitally enabled to have perhaps a more traditional model of care.

“We are by no means suggesting that everybody will want to use this, but we think, increasingly, most people will want to use it.”

Another key point is that the programme will not mandate NHS providers to use it. “This is not imposing a single solution on healthcare organisations across Wales,” says Lewis.

The final goal

The programme board aims to go out to tender for two contracts to create the app very soon – an application development partner and a technical development partner.

Both are key to the success of the programme, particularly because the DSPP doesn’t plan for this first iteration of the app to be the final destination. In fact, it is simply a stepping-stone to a magical world of innovation and integrated, seamless patient care.

DSPP programme director Stephen Frith says it is important to clarify that “the programme isn’t just about building a product”.

“It’s about setting up a collaborative centre of excellence environment where all interested parties can come together,” he says.

“The concept of a product from a citizen perspective is really very large if you think about every interface that you would need to access every aspect of every care.We are not building a great big central behemoth of an NHS product to access all of that. We are setting up an infrastructure where we can plug and play, to an extent, best of breed to support particular types of care and areas of care.”

So while the app might start off with fairly standard components, such as a summary care record, prescriptions, test results and referrals, the end goal goes far beyond that. The potential is endless, and the DSPP board has no plans to stop any time soon.

Frith envisages that it could give patients access not just to their full records across primary, community and secondary care, including radiology and pathology results, but remote monitoring of conditions and fed-in data such as blood-pressure monitoring, blood sugar level testing, or data from smartwatches or other self-monitoring devices. The aim is also to include social care records, and even potentially third-sector records.

The data issue

The DSPP programme board is keen to get the issues around data, information governance and public trust right. “It is all about retaining that trust of the citizens that the NHS can be trusted with their data,” says Frith.

He has come up with the concept of a data vault, creating a single record around the patient. “It allows you to start to see how the information governance model can actually work,” he says. “We want to empower patients to have control over viewing the data, adding to the data and seeing where the data goes. You want to give the citizen visibility of where that data is going.

“The NHS struggles to stand up to the current requirement to explain where data goes and how it gets there. But if you put it into a conceptual data vault for patients, you can start to see how you can surface visibility of who has had access to it, where it’s gone, why it’s being held, and then start to tackle the really challenging area of what happens if the patient starts to say ‘no – I don’t want that data to go any further.”

Another advantage of giving the data back to the patient, and putting the patient in charge, is that it helps to build a single record that transcends boundaries, says Frith.

He explains that in the NHS, there are huge IT systems, such as electronic patient record systems, GP IT systems, pathology and radiology systems, just to mention a few, that all collect large amounts of data, and all come from different suppliers.

That is why it is difficult to create a joined-up NHS, as was evidenced by the failed National Programme for IT in the NHS (NPfIT).

Frith adds: “If you just say, forget about that, let’s just give it to the patient conceptually and let the patient put it in their data vault, and then put a consent model over the top. The patient says, ‘yes of course, I’m happy for the GP to see that radiology image’ – then you’ve joined it up straight away, by building it around the patient. It starts to unlock organizational boundaries,” Frith says.

So how is this data vault going to work? Frith envisions using distributed ledger technology and fast healthcare interoperability resources (FHIR) application programming interfaces (APIs).

He says that if the GP gives the patient an electronic copy of a referral letter that is put into the patient’s personal health repository, that’s great, but it would be even better to put in a filing card, using a pointer that says there is a referral letter held at the GP practice and if you want to see it, this is how you see it.

“Managed correctly, FHIR APIs give you the ability to not only say where the information is, but also control the security, and also the metadata to interpret it,” he says.

“You go to your safe, your data vault, and you open the door. And there isn’t a copy of the letter there, there’s a little note saying a letter was sent on this date. And if you want to see what it says, this is how you reconstruct it. So you just put the fact that the document exists in the data vault, but you leave the data where it was. The advantage of that is that you don’t have synchronisation issues with the data, either.

“That is a neat way of visualising how you can construct technically the concept of the patient data vault without creating great behemoth databases and data stores.”

Supplier-friendly environment

However, NHS Wales’ ambitious vision won’t happen without getting current suppliers on board and creating an environment where suppliers can help the NHS to innovate.

This means a key part of the programme is an innovation ecosystem, where suppliers are supported in developing and deploying digital services across the NHS, which can be used to create new models of care.

“The key thing is that we allow the commercial sector to innovate, because there are a lot of good ideas out there,” says Frith.

“But if every single good idea has to sort out patient data-sharing, authentication and ID management, then they’re carrying a huge weight of unnecessary overhead to just get a simple idea off the ground. If the core platform gives them all of that, then they can focus on what the actual good idea is about and how to make it look really good and work really well from a citizen perspective.”

Clinical engagement is also a big part of the process. Lewis says there is a “huge amount of enthusiasm and clinical engagement from across the spectrum” in Wales, with clinicians keen to see this get off the ground sooner, rather than later.

The programme will progress by going out to tender shortly and running a rather rapid procurement. By summer, it aims to be in the discovery phase, followed by proof of concept in the autumn, and finally a minimum viable product in a year’s time.

The analogy the team uses for the project is looking at it as a tree. “The gateway application is the trunk of the tree and the branches are the functionality that people want to use and are developed by those best placed to do so,” says Frith.

The programme has also had a lot of engagement with existing suppliers in Wales, collaborating with them on how it will work, and what data standards will look like.

Another programme in Wales, the National Data Resource, aims to support the country’s health and care services to be innovative, modern and using data to drive decisions, including plans to open up clinical information systems to innovation, allowing the commercial sector to access data in a secure and efficient way, where it is in the best interests of both the NHS and the patient to do so.