This week I hosted a panel discussion on how we, as individuals approach health and wellbeing in the workplace and in our private lives. While our contribution to the panel was based on our recent report ‘At a tipping point: Workplace mental health and wellbeing’; we were privileged to have one of our colleagues, Caroline Hope, a Partner in our Public Sector practice, as one of our panellists. In this week’s blog Caroline has kindly agreed to share her views on human-centred healthcare design.
In Caroline’s own words:
I was diagnosed with multiple sclerosis (MS) in 2012 and my experience of this condition has caused me to reflect on what support I, as a person, need to help me live as productive and independent a life as I possibly can. In the last five years I have recognised that I am only a patient for a small percentage of my time, notably when my symptoms change and I need access to health advice or interventions, but for the majority of the time I am a person focussing on being active and well, while living each day with a chronic health condition. This recognition and my natural tendency to tackle my own challenges with evidence based learning led me to explore the concept of human-centred design approaches and apply this to my own situation.i Essentially it has taught me that new and better opportunities to improve care can be uncovered by moving beyond the patient focus to gain insights about the whole person.
Let me recap the reasons why insight from the person can be more powerful than patient insight.
One: I spend more time being a person than I do being a patient
In 2016, I spent about 0.01 per cent of my time in direct contact with a health professional. I met with my GP to have a prescription renewed, I saw a neurologist and MS nurses to review my MS, and I went to A&E (followed by fracture clinic, scans and physio) for a fractured fibula. For the other 99.99 per cent of my time I attended to my health needs using my own resources and networks. But few, if any, of the healthcare professionals I occasionally interact with ever ask me about that time. That is a lot of untapped insight.
Seeing me only as a patient limits your view of what might be possible to support wellbeing. You are focussed on what you do - my treatment and what happens when I feel unwell, rather than the things I do in my life to stay healthy and well.
Two: As a person I have lots of different ways of accessing resources and support that meet my needs
When I was diagnosed with MS I wanted to see the MS service quickly. The wait for an appointment was seven weeks. My GP tried to help shorten this time but wasn’t able to do anything. So I had to turn to my own resources; an old school friend who was now a neurologist, a friend who had a friend with MS and two people who I trusted. This support network helped me carefully navigate information from the internet – at a pace I could cope with.
When my mindset is ‘patient’ I am dependent on what the healthcare professionals tell me I need to do and what health resources are available to me. When my mindset is ‘person’ I access a massive network of health and other resources.
Seeing me only as a patient limits your view of the kinds of resources that are available to support me. You are likely to only see resources and solutions from within the existing health system and not those around me that are largely untapped but equally valuable.
Three: My emotions and values drive my behaviour, not clinicians
In the MS service, it was a neurological physio who first connected with me as a person rather than a patient. She asked me a lot about my life, what motivated me, what was important to me, what worried me, what support I had, and where I spent my time. The challenge I presented with was poor balance and weakness in my lower limbs and core muscles. Six months later, with a group of friends and colleagues, we completed a 1km circuit in Hyde Park riding unicycles! This was one of my greatest achievements – we worked together as a group, relying on each other for balance, supporting, encouraging, accepting set-backs and pushing forward together.
Seeing me only as a patient limits your view as what influences my behaviours in my everyday life, where I spend the most of my time, and where you have the greatest chance of achieving the best outcomes and impacting my health.
Four: As a person my outlook is about opportunities, as a patient the focus is on the problem(s)
I was recently asked to share my experience as a user of MS services and areas for improvement with a group of my management consultant colleagues. When I was preparing for my presentation I had a sinking feeling that if I responded to the brief I had been given then I would have nothing new to tell them. It would be a woeful, but all too familiar, story leaving people feeling frustrated on my behalf but without anything new to think about. So instead I decided to talk about my experience as a person living with MS. I started by asking myself the question; ‘Since you were diagnosed with MS what are the things you are now really good at?’ I quickly listed seventeen things ranging from ‘knowledge of inflammatory foods and nutritional data’ to ‘importance of understanding and managing my body temperature and which cooling products work best’.
Seeing me only as a patient means we only focus on the problems. We might think of creative ideas but they will be centred on what is already known. If you discuss with me as a person then we have a completely new space to rethink possibilities and solutions.
So, as a person I can help everyone see different things and see things differently.
When a healthcare provider asks me about my patient experience I might be able to help them see the same things from a different angle. We could talk about how I feel about waiting for appointments at a clinic and this might reveal something new. But the likelihood is that it would still only be about improving the clinic.
If a healthcare provider asked about my experience as a person we would most likely never discuss the clinic but instead we would both understand better about living with MS and the tactics I have in place to live well with MS. This could still open new ideas and opportunities for improving access to services and clinics.
Bringing together insights about people’s lives beyond health services, taking a broader look at the resources around them, understanding their behaviours and looking for opportunities, means you can design new solutions for people who are living with complex and long-term health conditions like mine.
With a growing number of people living with multiple long-term health conditions we need to find new solutions. Solutions that maximise all resources including peoples own resources and capabilities.
i Human-centred design starts by uncovering fresh insight about a person and the problems or opportunities in their lives, in contrast to starting with the existing system and how they behave within it. This means new solutions, not yet known, can be created rather than improve existing solutions, what is already known.