The below is the text of a talk by Mark Brown given at the mhealth Habitat event ‘People-driven health and wellbeing’ on Thursday 14th May 2015 at Open Data Institute, Leeds.
I’ve been asked to be a little provocative about the idea of people driven digital health. So I’m going to start with a definition. People driven digital health begins with the needs of the user and then finds the data. It starts with people and complexity and richness; it starts with the problems people have and then it finds out what it needs to know to make a solution happen. People driven digital health is about using digital means to solve problems people actually have. It’s not about amazing singular genius, it’s about problem solving process.
People driven digital health recognises we now have the power to stop trying to bend people to fit into solutions and can actually create solutions that fit in with people. People driven digital health starts with what actually happens to people and how it feels and goes on from there.
Health happens where technology, culture, practice, knowledge and resources meet people’s real lives.
We’ve made the mistake of assuming that the places where these things touched people’s lives in the past are the only places where it is possible for them to touch people’s lives in the present.
In the past it was difficult to start with the user because it was difficult to find them; difficult to bring them together, difficult to ask them what they thought.
The ways in which we have done health in the past have been limited by our technologies. The only ways in which we could collect data from people was if they were right in front of us, so we would observe. Or if we could get their address so we could write to them. Or their phone number so that we could speak to them. We could only help people if they were in front of us. But digital is changing things. Do you remember when the only books you could read were the ones that were available in the bookshop or library in your town? Or when you had to order records from the record shop before you could hear what they sounded like? Digital has changed more things than we realise.
So we could only think of heath as being what we could make available with the technologies we had. But technology has been changing. We carry more processing power in our pockets than existed in the entire world in 1940. Technology has gone through a process of consumer democratisation. Many of us carry with us a tiny computer at all times that is capable of carrying out tasks that would only have been possible using specialised equipment just a generation ago. Some of us even use these tiny, amazing digital devices to make phone calls. All of the time, people are using digital technology and digital devices to do amazing and wonderful things while in health we often have existing structures that are dismissive and even hostile to the encroachment of these little computer wonders. You can pilot an airplane from your iphone, but in my area, mental health, we’re still bickering about electronic patient records. In a world of techno magic we’re still talking about bureaucracy. People driven digital health might begin to break that deadlock, if we let it.
In health we’ve sometimes been guilty of ignoring external consumer pressure; certain that the ways in which we deliver health outcomes are detached from the ways in which people live their lives. In a world where we would find it ridiculous that someone else chose our car or our phone or shoes for us we will happily ‘choose’ on behalf of thousands what insulin pump they use or what telecare will monitor them. We ignore user preference and design when we think of digital as being a medical device. If we think preference is mere frippery; why do trainee medics spend so much time umming and ahhing when buying their first stethoscope?
In the words of a tweet from Alan Cooper (@mralancooper on twitter), one of the pioneers of the use of persona in design, in a tweet published on 13th November 2014:
“When your users are ill-defined the imperatives of the stakeholders dominate, and that is how shitty software is created.”
In health we can easily define exactly what all of the stakeholders are trying to achieve in the development of a solution (reduction in multi-morbidity! Increase in positive outcomes! Shorter waiting times! Bigger majority in parliament! More column inches!) We find it more difficult to put a face and history and favourite colour and religious belief and sexuality and preference for which device to the people who will actually use the bloody thing we’re making happen.
The end of the era of big breakthroughs
There are many things that we know to be true about what people should and shouldn’t do about their health. We’ve been amazingly good at working out the best treatments for people’s ailments. We’ve just been terribly bad as patients at following the rules of what we need to do to make these treatments work. Lives are complex because people are complex. When we leave out all of the things that make people people, we’re missing a huge element of what makes things succeed or fail. Historically the people who came up with medical solutions were not the same people who were the direct beneficiaries. We’ve been great at knowing what works in the trial but awful at knowing works in the context of real life.
Sometimes this is about people who experience particular health conditions hacking together their own solutions to their own problems, as some who’ll be speaking today have, and finding that they’ve hit upon a problem that others were facing, too. Other times it’s about engaging in a process of discovery by spending time with people and helping them to crystalise their problems and then honing those problems to such a finely defined state that they can be used by engineers to develop solutions which can then be tested.
I think we may be past the era of big breakthroughs. Big medical thinking has been awesome at getting us to this stage. But I increasingly see that complexity and small breakthroughs is where our gains will be made.
You can’t design from abstracts
We still have dream that it’s possible for some clever men from the ministry, with their slide rules and tweed jackets and pipes, to digest all of the statistical data and find some kind of golden solution to social problems. It was a dream when we actually thought about managing resources that way and it’s even more of a dream now there’s no chance us ever resourcing it. We think about solving the health problems people have as being some kind of statistical exercise. If we know X and Y to be true from data, then we think that it’ll be possible to develop solution Z and then it’ll work for everyone.
If we aren’t careful in health and care we make ‘patient need’ a statistical abstraction.
You can’t design anything from statistics. Design is about engineering solutions to problems that people have.But it’s more than that. We might know that statistically most chairs have four legs but this does not mean that all chairs with four legs are equally comfortable to sit upon. Statistics will tell you that I am a 37 year old person with a diagnosis of bipolar II disorder but they won’t tell you that I have a deep hatred for Linkedin or that I’m a vegetarian that doesn’t like eggs or cheese. These might not seem like big details, but they would be if you were trying to develop a digital health service within Linkedin. That tailored diet advice to people in their thirties with a bipolar spectrum diagnosis.
Based on eggs. And cheese.
Access to digital technology is growing year on year. As processing power and functions continue to grow in power and diversity, so does the rate at which people integrate potentially paradigm busting devices into their lives.
We could, if we wanted, tomorrow instigate the biggest ever study into the effects of psychiatric medications if we wanted. People are already using wearables to track their heart rate, their activity, their sleep. People are already tracking moods and calories. We could just say ‘hey! people! contribute all of that data to us along with what medication you’re taking. Then we’ll try and see what it tells us’. We could find ways of personalising dosage of that medication from that data. It would tell us lots of things that we hadn’t thought to ask about. People could generate the data for themselves and then hand it over willingly, in all of its complexity for others to make sense of, like happens in the citizen science movement where people put up home-made weather stations in their gardens to collect local level climate data. But we can’t be arsed. Or more correctly, the data of people’s lives doesn’t fit the categories which we want to collect data in.
People driven digital health gives us a chance to start small, to find little things that might help people by spending our time with people, by digging either into our own lives or into the lives of others. It gives us a chance to build things that might initially change the lives and health of a few people, then a few more. And then more. Each iteration refining the bit that works further until we start to see new mechanisms emerging in different areas of health. In people driven digital health you have to do it to prove it. In other forms of health you often have to prove it before you can do it. But even then, the needs of people should drive the implementation of what research has ‘proven’. We’ve got a lot of gold standard treatments that take away their glitter by being delivered in bargain basement ways.
Health doesn’t listen if you don’t say ‘health’
For some of us, finding the problems to design from will be about examining our own lives then finding others who share similar. For others of us it will be about starting processes of discovery, of using ways of working with people to surface problems. For others of us it will be about unlocking resources so that others can begin these processes. Leeds has already begun this, and I’ve been playing a tiny part in it, which is awesome. It’s happening in other places, too. There are ways of making this happen, which are new to health but not new to other areas of building digital things. Health just stops listening when someone doesn’t say ‘health’ at the start of the paragraph. It’s there to be witnessed, adapted and tried out. And, in my experience, user experience driven design makes for far more exciting ways of working with people and involving people than ‘engagement’ or ‘involvement’. It makes better things, too.
Engineers like solving problems. Health professionals know about health. People know about their lives and how they feel about them. If you add those three together you begin to get possible solutions that people can try, break, hate, love, ditch, run with or take to their hearts. It makes things people can test.
In a country where we’re lucky to live longer, but where we are more likely to spend more of our lives living with multiple health conditions and disabilities, digital presents us with a chance to solve some problems, mitigate others, or alter the condition of life around more.
This is a way of working many of us are unfamiliar with, one that adds complexity rather than removing it. When we take this path our big solutions begin to look less clean, less pure: complexity seeps into them.
But that’s only because people are complex. Accepting that and working with it will mean that we start to find little, shiny, polished solutions to little problems that really exist in people’s lives. And within those little solutions we might find the next big ones.
That some of us are here talking about it today shows that this is possible.
We just have to make it happen more.
Now, don’t go back to the office tomorrow, go and hang out with some people and see what problems they really have.
Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter