I love old Disney films. Over Christmas we sat down to watch Snow White. As we discussed who our favourite dwarf was, we also had a guessing game of when the film was made. We were all way out with our estimations, with the answer being 1937 (pre-WW2). How did Walt Disney and his team create something so visionary that it would change the pathway of animation and the experience of childhood forever? The answer is vision and a relentless drive to achieve it.

Walt believed that “our work must have a foundation of fact. We must know everything about it. We cannot do fantastic things unless we know what is real and what is not”.

Because of the way in which Walt and his team approached problem-solving, he ‘imagined’ a new future. So instead of asking ‘how could we improve your experience of the healthcare system?’, what if we began with ‘how can we work with you to improve your health?’.

Surely this approach to problem-solving would empower individuals to have a better choice aligned to their aspirations rather than a top-down, system-led solution?
We have all been through a maelstrom over the last two years, battered by nature and its terrible consequences, with healthcare systems struggling to the point of breaking. Do we continue to do what we have done in the past and try to make what we have more efficient, optimising patient flow in an industrialised way? Or do we need to be a first mover, embracing uncertainty and chaos, knowing the solution will be game-changing?

How can we take that leap forward in mapping patient pathways? One potential option is accessing self-care through mHealth apps, but these need to complement a new dialogue with patients. Sitting down with patients who need chronic care is the first step in assessing how they can fit it into the system of care. It’s only by agreeing a way forward together and focusing on mutually agreed outcomes that demonstrate improvement that we can begin a truly patient-centric approach.

So what is the current status of mHealth apps within the healthcare system? The Organisation for the Review of Care and Health Applications (ORCHA) is now a global organisation working with 70% of NHS organisations in the UK to recommend safe and effective mHealth apps.

Of the 262,000 health apps available to download today, ORCHA has reviewed 10,000 to date with mixed results. 15 of those apps focused specifically on systemic lupus erythematosus (lupus) and when assessed against ORCHA’s 350-point checklist, just one app was able to provide evidence of efficacy and clinical assurance. Just one!

These statistics show how incredibly hard it is to start the process of self-care and assessment, especially if the tools aren’t fit for purpose. What’s interesting is that these health apps have not engaged with the patients during the process.

You may ask why we looked at lupus? Because there is a massive unmet need with this autoimmune disease. In 2021, an academic review of 20 lupus apps demonstrated that current mHealth tools available to this patient population are of poor quality and limited functionality (Dantas et al, 2020). In fact, one patient who we interviewed directly, said: “I have been using a notebook because the apps [available for lupus] were just impossible to use. I’ve tried several and have not found them to be very useful.”

So what did those with lupus say they needed to help them on their patient pathway?

• Access to personalised, actionable information – to help them manage their condition on their own
• A more informed and active role in treatment decisions – to be better ‘seen and heard’ through their interactions with healthcare professionals (HCPs)
• To find support for, and be able to support others through, the heavy mental and emotional burden of this chronic debilitating disease.
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The challenge of improving pathways is to encourage partnerships outside healthcare, defining outcomes in partnership and providing the resources patients want and the data the system would most value.

So, “Hi ho, hi ho, it’s off to work we go”. There is some way to go before we can make real improvements to the patient journey, but as Walt said, we must know the facts before we can do fantastic things and that begins by talking to the patients to discover how we can make their lives better.