Personal reflections on design and digital exclusion in digital health apps.
As a student at the NHS Digital Academy (NHSDA), I had the opportunity to learn a little about the concepts of human-centred design and digital exclusion. Little did I know when I started studying this subject area that I would be living a parallel, real-time experience of why these concepts matter. This lived experience has undoubtedly helped me relate to the course content personally.
As a more mature student member of NHSDA, my parents were proportionately older too. In this piece, I reflect on a time when my father, who has recently died, had just been diagnosed with inoperable, metastatic cancer. This was undoubtedly COVID collateral. My mother, who was younger than my father, had mobility issues related to osteoarthritis and some visual impairment due to macular degeneration. My parents were and would continue to be heavy users of health services. Some of these services had become digital over 2020/21 due to the pandemic.
I have personally benefitted from the digitisation of my GP practice. The roll-out of web-based digital platforms allowed me to use their digital forms to ask for things like a physiotherapy referral or routine blood tests without making an appointment to see the GP. This is perfect for me because I can navigate the system quickly. An unintended consequence of the pandemic’s ‘digital first’ strategy had been to open the flood gates to primary care for people like me. In 2021 in my digital health role, I became aware that many GPs now wanted to ‘switch off’ web-based digital platforms. It had become too easy for people like me to make service requests to the GP practice. The workload for GPs had become unmanageable. The new digital health services rapidly deployed in response to the pandemic were key contributors to this outcome.
In contrast, the converse was true for my mother, who desperately needed a face-to-face GP appointment. She was unaware of her GP practice’s online tools. After failing to get an appointment traditionally, over the phone, for two weeks, she eventually used the practice website messaging system to get an appointment (despite the website explicitly stating not to use this method). The practice website did not mention the availability of any web-based digital platform available to patients but did mention the NHS Digital approved smartphone applicationpatient access. For at least two weeks, my mother was in pain, unable to access healthcare, and was digitally excluded. My mother’s experience made me recalibrate my approach to digital health. My conclusion was that in future, I must now consider the digital exclusion. How empathic, human-centred design and better communication must make access to clinical systems targeted at the general public as easy for people like my mother as they are for me.
Making patients aware of these platforms is one thing, but another factor is usability. Looking at the UK government and, in particular, NHS websites, I have always been struck by how simple they look: black text against a white background and a green ‘button’ to press when completing a transaction (blue for the NHS). My thought was that they were relatively unsophisticated. Despite this simple design, I noted how difficult my mother found it when we attempted to set her up with the NHS app. The plan was to use this on her iPhone and iPad to keep track of her & my father’s appointments, repeat prescriptions and medical records. The registration process was baffling. She needed to write, on paper, to their GP practice manager to get access to the record, and a further, separate paper transaction was required to link her profile to my father’s. This was incredibly challenging for them. In truth, despite me setting it up for them, they disengaged from the process. In doing so, they missed out on some of the intended benefits.
I understand the rationale for the simple, uncomplicated, straightforward design concept used in government websites and that the team who developed it did so with an empathic approach. The idea is award-winning. The design was employed with users who may have visual, cognitive or other impairments in mind. The bold, simple nature of the presentation and functionality of the website and iOS app that Ian Roddis and his design team developed brings value that I hadn’t appreciated before. My experience of my parents’ struggle is that there is still room for improvement to make these apps and websites genuinely accessible. I hope that my parents’ story may encourage further steps towards improving NHS and government digital design and, indeed, any solution design. My experience will undoubtedly impact any design that I find myself involved with in the future.
Unwittingly, I had acted as my parents’ digital health champion during this time. I was trying to support them through an incredibly challenging time. This is only one of the many challenges we faced as a family trying to do our best for a relative at the end of life in the UK. The learning from this experience will help shape my digital health approach further.
