Yesterday, I talked about design as being “empathy in action”. I ended the post by questioning how Learning Health Systems can make sure empathy with their users – patients and professionals – is part of the drive for action and improvement.
There’s been a fair bit of chat lately about the potential of Virtual Reality tools to act as ’empathy machines’, which enable wearers to experience first-hand the perspective of others. Making sure Learning Health Systems come wrapped up with fancy tech like VR might appeal to some people (probably people who think adding the word “wearable” to something immediately makes it usable.) But we have a more old-fashioned way of doing this: we use stories.
The power of stories to evoke empathy, and consequently to encourage change, isn’t new. And the power is already being embraced in health care. Experience Based Co-Design makes patient stories central to the process for identifying where improvement is needed and encouraging action to make those improvements happen. Sites like Care Opinion recognise that stories about care can be hugely effective in communicating what the experience of care is really like, and how it should be made better – see, for example, this excellent post “Stories: the original data for improvement”. The post includes the quote “The plural of story isn’t data. The plural of story is culture.” I think this is especially worth reflecting on, given that Learning Health Systems talk about achieving a culture of data-driven improvement as well as a structure to enable it to happen.
If you’re still thinking that VR might be better, it’s worth reflecting on this: critics have disputed whether virtual reality can make you more empathic, but more crucially for us, it may not encourage you take action. Putting yourself in someone else’s shoes takes you out of your own, and distances you from your own responsibility or culpability. Recognising that something is not your experience, but is an experience that you can impact and you can try to change, is a key part of using stories for improvement.
Asssuming a role to try to provoke empathy can also be misleading – people who put on a blindfold (or a VR headset) to ‘become’ blind end up focusing on the difficulty of the experience for themselves, and assuming that all blind people struggle the same way, as opposed to learning from blind people how they have adapted and managed, and what they think the real problems are.
I think it’s essential that neither researchers nor health professionals think they can ‘take’ the perspective of a patient. We should listen to that perspective as told to us by patients themselves. We should recognise ourselves as outsiders to those stories, but as people with responsibility to act on them. Empathy in action, once again.
Data, patients, action! 