The guts of the machine

Last week, the Health Services Journal (HSJ) podcast featured an episode about how patients were receiving cancer diagnoses via the NHS App before a doctor had a chance to have a conversation with them:

Cancer Research UK told me their helpline nurses are increasingly getting calls from people who are seeing something in their App, don’t understand what it means, and calling them up to interpret it. In some cases those nurses are the first people telling that caller they have cancer.

This would seem to be a major failing of digital design, but it turns out that this isn’t a new scenario at all. This kind of service breakdown has been happening for decades because delivering news based on lab tests involves a complicated chain of communication, with handovers between multiple groups of people attempting to work in concert but sometimes lacking the appropriate tools to do so. It is a workflow problem that surfaces in the NHS App but isn’t really of the NHS App.

We are hooked up to a data pipeline that pre-dates the App itself. Much of the data that gets fed into the App is captured and managed with tools designed well before the App was a glimmer in Jeremy Hunt’s eye. The quality of material we have to work with reflects that. GPs have been writing consultation notes since GPs have existed, but until the Prospective Access programme went into effect in late 2023, very few of these notes were written with the idea that a patient would ever read them. Since then, GPs are contractually obliged to make consultation notes available to patients; in turn, this has meant that GPs need to reconsider how they document appointments. The process for releasing test results also needs be altered to account for the new ways that patients can receive information without a doctor’s supervision. An initiative like the NHS App, which is intended to make patients “empowered to control their care”, might help democratise healthcare – or, it might expose patients to the innards of a complicated system that no single person fully understands.

This past week I was out doing pop-in research at a GP practice in Northwest London. We coordinate this kind of visit with the surgery’s practice manager and inevitably when we arrive on-site we get to chatting about the state of digital services in the NHS. They tell us about their problems and ask for advice to give their patients. Often these conversations highlight how coordination between central teams and providers has broken down, resulting in excess burden for patients and staff. A simple example: The practice we were visiting uses Patchs for handling appointment requests. They complain to us that their patients don’t want to use two apps, and so they ask if we can integrate Patchs into the NHS App. It is a sensible question, but Patchs has been embedded into the NHS App since late 2022! Apparently no one told this GP surgery and it isn’t clear how they were meant to have found out.

The situation is similar in hospital settings. Considering the example of relaying a cancer diagnosis, the federated nature of the system makes it difficult to deliver this serious news in an appropriate way because each team in each hospital has a significant amount of freedom to do things they way they see fit. This situation is meant to allow each team to adapt to local circumstances, which sounds reasonable, but it also means that any change to how a national digital channel works will need to be communicated and implemented as a custom endeavour in each individual place. Designing end-to-end services only makes a difference if said service is fully implemented in all care settings.

The wider system is so highly fragmented that work to provide coordination and education is both massive and never-ending. I’m not at all convinced we take this seriously enough. To be clear, there are teams working on this and they are excellent at their job, but in my ever so humble opinion they are seriously under-resourced. This work should be an equal partner to the work of setting policy and delivering digital services. It is the necessary glue that could hold it all together.

What stories like the one on the HSJ podcast illustrate is that design for the NHS App is never just about the App itself. Everything the App does has a relationship with the wider health system. Many of those relationships are brittle workarounds. Changing the App without changing how services work in many other parts of the system can (and often does) produce bad results for patients. It isn’t as if the App team don’t know this. Rather, it is that our reach is severely curtailed. If we are going to be able to ship features, products, and services that have a positive impact on people’s health and the system at large, we need other teams to do the hard work of outreach and education, always and forever.

So much of the 10 Year Plan emphasises how digital technology will change the way that healthcare is delivered. I don’t doubt that there are ways to make the system more efficient or simpler to engage with, but focussing on a shift to digital tools without also addressing the very human systems that these tools rest upon would be an expensive waste of time. As the HSJ podcast makes clear, all of these digital bits are simply an interface onto a very human system of communication. I fear that if we don’t put a lot more energy into improving this connective tissue, the work on policy and digital services won’t amount to much.