Dr Mona Johnson is the Senior Clinical Lead for Domain A at NHS Digital. National Self Care Week runs from 13th-19th November.
I am due to speak at a “summit” about long-term conditions in January. I am nervous. Do I know enough about this to talk for 20 minutes? I am just a really average GP who happens to work in this space. Some of the other speakers are professors(!)
So how are digital enablers supporting the evolution of self care? Which digital enablers? And what is “self care” in this context anyway?
The selfcareforum.org describes that self care comprises:
“The actions that individuals take for themselves, on behalf of and with others in order to develop, protect, maintain and improve their health, wellbeing or wellness.”
At the most basic level, this is about making healthy choices towards a healthier life. For people with long-term conditions, self care is usually involves some push and pull between the patient and the clinician(s)/service(s).
So what are we trying to do here? What’s the point?
The National Information Board Paperless 2020 strategy can be boiled down to three key objectives:
- To improve outcomes for individuals and the population as a whole, by making it possible for people to take control of their own health and care and supporting shared care between patients and their clinicians;
- To increase efficiency/reduce cost by giving people access to the right care at the right time in the right venue, reducing unnecessary bureaucracy and process inefficiency, and reduce variation across the NHS;
- To improve the experience by putting users at the heart of all digital services, making it easy for commissioners to buy/build high quality digital services, making it easy for people to get their needs met in the manner, time and place that best works for them.
Digital technologies seek to solve problems for people. Digital transformation centres on the removal of friction – if you can do it in three clicks, just use three clicks – not 20. So what are the problems for the users of health services, particularly those with long-term conditions?
There is a real power dynamic between users of the NHS and the NHS itself.
Seriously, it’s true. I was pretty blind to this until fairly recently. Even then, the point had to be repeatedly banged into my head until I heard betabetic tell her story and the penny finally dropped.
In order to engage with the NHS, there are all sorts of rules. These rules are poorly communicated to people and are frequently inconsistent. For example, I can self-refer to physiotherapy through an online web service in my locality. I would not be aware of this, without having first visited my GP (friction!). This is not the case for the practice down the road, just across the boundary, where I would have to have a GP consultation for a referral to be made. Confusing!
Booking an appointment: what an ordeal? It’s enough to put you off. Now before you all respond “Good, you can’t have really needed to go!” we all know that this is not always the case, and not really the point. It is a prime example of process that is burdensome for patients and practices alike. Those practices who offer people appointments to book online do see benefits; their staff can get on with other tasks. It is not, however, a complete replacement – simply an adjunct that needs thoughtful implementation rather than the flick of a switch.
It is not just the logistics that are disempowering for people. The interactions with the system and the people who work in it turn capable, independent people into submissive dependents or wayward rebels. In part, this may be because the nature of the consultation between patient and clinician is inherently paternalistic – in my interactions with patients I have certain responsibilities that I cannot share with the patient. But in fact, there is a lot more that I could co-own with people who come to see me.
In fact, co-owning, or co-designing care, might actually mean that people are more invested in their own care plan and more likely to follow it. They might be better able to identify when things are going off track and have an action plan in place to deal with it. We could actually give them the skills to advocate for themselves, rather than, depending on their doctors to advocate on their behalf. If you are familiar with Eric Berne’s model for human relationships, set out in his works on Transactional Analysis, you might recognise that there is something here about moving from a ‘parent-child’ relationship to ‘adult-adult.
Or, simply put, it is about actually acting like a good parent and allowing your child to grow up.
Digital enablers give us the opportunity to move away from a dependent child-parent structure for clinical encounters.
For me, I see my role not only to identify ill health and its causes, but to work with people to give them the tools and permission to help themselves. Digital tools will help me to do this.
It could be as simple as a diary to monitor symptoms, or a product that helps track their condition and prompt them to adjust their treatment themselves. Of course, there would need to be set trigger points for seeking further help, but these could be programmed with the patient and could progressively hand-off control for monitoring to them.
Any parent will know, it can be frightening to let your child grow up. Your responsibilities change, and you never completely stop worrying or feeling a sense of responsibility. But it can be liberating to move to an “adult-adult” relationship. And in the end, it is a much more emotionally and financially sustainable place to be.