In my ‘pre-cancer’ life I had a career working to improve the health and care services people in Scotland receive. Some would call me a researcher or a designer or a project manager but really the title wasn’t important – what was important, for me, was ensuring that I was making recommendations for change that were what people wanted and would benefit them in the long run.
In this work I’ve always had a primary desire to improve health services; to give people ‘in the system’ a voice and ensure that their care is ‘person-centred’ – in short, ensure that they are in control of their care and maintain their voice.
When working in this field I’ve often come across the term ‘service-user’. This is a term used to describe ‘patients’ so they don’t feel labelled and feel they have an active role. But it’s always made me feel uncomfortable…
Who decided ‘service-users’ liked that title better than ‘patient’…my suspicion is it was likely us ‘designer’ folk in our effort of giving them a voice. The irony…we are just labelling them without asking them what they think and in doing so we may just be taking away their voice even more.
Let me explain…
In my experience when I worked with people receiving health care (aka patients) they, generally speaking, didn’t care what they were labelled as so long as they were listened to.
Now I am a ‘patient’ I can honestly say I would HATE to be labelled a service user!
Yes I use some services – I am a ‘service user’ at Amazon.com, at Tesco, at my local post office – but I am not a service user of the NHS! That implies choice. Or more simple, it implies desire.
I am a patient.
And I’m glad to be one. Again let me explain…
When in the hospital the label ‘patient’ offers comfort. It offers reassurance of my role. It makes me feel safe. In those hours when I am receiving active care in a hospital environment the term patient gives me control over my care. It creates the boundaries between me and the nurses; between me and the doctors; between me and the surgeons. It also allows these boundaries to be challenged and moulded as we work together shaping my care and getting to know each other as people.
The term ‘service user’ doesn’t. It doesn’t clearly define my role. It suggests I’ve chosen to have the care, that I’ve chosen to have cancer in the same way I’d choose to shop at Amazon.com over another online store.
Now…this may be hard for people to get their head round. How can the term ‘patient’ be more empowering than ‘service user’?
But it’s not really about the term. It’s about the term being used in the right place at the right time.
Is it right to be labelled as ‘patient’ all the time? No? Do I want to be a ‘patient’ when I am out for dinner for example? No? Then my label may be ‘wife’ or ‘friend’. When I am doing my food shop? No? Then my label may be ‘consumer’.
Only when in a hospital environment receiving care is my label ‘patient’. So what term should be used the rest of the time?
I am a person.
A person who has cancer.
A person who is married.
A person who has siblings.
A person who loves nature.
A person who loves cooking.
A person who is female.
A person who sometimes needs to receive specialist care but who also sometimes doesn’t.
But, ultimately, just a person…
If we are really in the business of designing for ‘peole’ then this is the only label that is acceptable.
I want to see a design community that embraces the notion that you don’t design service improvement with, for example, designers, doctors, nurses and patients (or service users…if you are still inclined to use that term…) in the room.
You design service improvement with a range of different experts of their own lives and life experiences in the room. You give each person the opportunity to share their experience. You value each experience equally. You don’t label people by their experience because their multi-coloured life experiences make their expertise entirely unique to them.
At the start of this post I said that what mattered most to me was “ensuring that I was making recommendations for change that were what people wanted and would benefit them in the long run”. Those ‘people’ are all the people involved. We can’t provide good health care, for example, that only benefits the patients, it has to benefit the healthcare staff too or, quite simply, it just won’t work.
Ultimately it has to benefit the ‘people’.
So, if you are working in this field and you want to make change…start spending less time on what you call the ‘people’ and more time ensuring you are involving and listening to(!) the right ones.