I have aways liked novelty, that is:
- trying new things
- sampling new foods
- innovating at work
- playing with online tools
so it’s no surprise that I’m an early adopter of some technologies (with an email address that is my name without numbers or special characters) and a user of digital tools to manage my bipolar, general health and caring responsibilities effectively.
Digital health tools for patients
With that comes some tolerance of imperfection, work in progress and perpetual beta. Sometimes screens leave you guessing as to what the developer(s) meant when designing a system. The screen grab below is taken from the NHS App for an upcoming hospital appointment I have. It is preceded on the page by the location, date and time of the appointment – “Type code” had me guessing for a while.
Doubtless it is obvious to those working in the NHS but to me, as recipient of the notification, it was a cause of some anxiety. I was expecting an appointment for tests – “Neurology F/Up” didn’t quite match that – had they got it wrong? You may well guess what I was thinking it meant too.
Might that line be expressed as, “Purpose of appointment: Neurology follow up – tests” as this was a better match for what the referring doctor had told me.
Good practice when writing for the web tells you there should be no surprises for your audience – link text should indicate the meaning of the destination page, so that people can navigate with confidence. I appreciate that healthcare in particular is a minefield because systems are shared between patients and clinicians and translating the jargon/specialist language of the latter group is quite a challenge, medical terminology being very precise for a reason.
A second seed of doubt was that the appointment was to be at the Limb Fitting Centre – for someone unfamiliar with the physical layout of hospital, this also didn’t seem right – I thought I was attending a test, not limb fitting. I didn’t want to wait till the day of the appointment to find out it was wrong, so I rang the appointments team. I waited on the phone for quite a while before hanging up and finding another route for my question – via email.
“Users are not designers” – Jakob Nielsen
The reason we invest in technology is so it can make things efficient for organisations and convenient for people using services. The NHS app allows 24/7 access to information for example. So rather than me clogging up NHS phone systems and email inboxes – all of which require resource to service, in a perfect world these systems would be aligned and I could check my medical notes from the phone in my pocket. Had that notification page above had a slight tweak I would not have needed that further contact about this appointment allowing the NHS more efficiency with urgent/important things dealt with by real people on the phone and reduce the backlog in the enquiry inbox.
Jakob Nielsen, a usability pioneer, says observing five people can provide enough of a consensus to improve your digital service.
One thing that also puzzles me is why my physical health is 100% accessible on the NHS app while mental health information 0% – appointment letters, reports and updates all come via snail mail even though the two may be interrelated.
We’ve been here before
In the analogue world, there was such a thing as the reference interview used by librarians, a process to establish what a person’s information need was, it might begin something like this
Patron: “I am interested in China”
Librarian: “Porcelain or the country?”
This is akin to a medical consultation where the doctor may ask a series of questions to establish or confirm symptoms and identify treatments. In digital systems such things need to be anticipated and built in whilst also taking account of a wide range of capabilities in its audience – it’s a tall order.
Mood monitoring tools for bipolar
I didn’t use a mood tracker for my own self-management for at least a decade after diagnosis and I see a psychiatrist very infrequently these days. When I do, I have been more confident in my self-knowledge and in talking to them about what I think may be going on. The graphs of the tool I use, True Colours are really useful as supporting evidence when laying out my stall of how I have been feeling in the last months, the correlation with activities/life events and lithium levels and what I would like to do next.
Coordinating care
I guess we are still in the shallows of these developments and there is certainly scope for expert patients as well as novices to offer insights alongside big data and AI. A recent addition to my phone has been the Jointly app designed by Carers UK. It addresses the needs of a multidisciplinary team of people who look after someone in a straightforward way. A simple interface with task allocation, a calendar and the ability to customise and protect confidential information makes for a helpful tool, not running before we can walk.
Digital health tools I use
- Mood tracker app – Bipolar UK
- Jointly app – Carers UK
- NHS app – NHS
- True Colours – Bipolar Disorder Research Network