People, health, technology and messy smallness: In defence of people driven digital health

Text of a speech delivered by Mark Brown at NHS Innovation Expo 2015 as part of the pop up university session ‘Creating Conditions Digital Innovation’ in Manchester on September 2nd 2015.

I’m betting that a number of you are here because you’re all excited about the digital health bit of the subject.  I’m going to talk to you about the people part of people driven digital health.  That’s the messy part of health: people.  If only patients were as predictable as chemistry, then we’d have a health system that ran neatly and to budget…

So, what is people powered digital health?

Put very simply: people driven digital health is what happens in the space between what our health services currently provide and the needs that people have that are currently not being met to their satisfaction.

It’s people saying ‘this!  This is the problem I want solved!’ and either solving it themselves or contributing to the process of solving it.  People powered digital health doesn’t start big, it starts small. With the things that really irk people.

People driven digital health, when it works, is about making digital products people choose because they solve a healthcare problem that they actually have.

Sometimes it’s about people who experience particular health conditions hacking together their own solutions to their own problems.  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 then can then be tested and refined.  For it to count as people driven digital health; though, it has to begin with people.

It’s about building project structures that involve, or emanate from, people who have first hand experience of the problem the project is trying to solve, or even better, are the people who set the problem the project is trying trying to solve.  People help define the problem, people help refine the solution.  People don’t just wait to be shown what the big clever medical people have made for their benefit, presented it as if it were a handmade dollshouse presented by a proud parent on a birthday.  All the way through, people driven digital health goes back to the people who have the problem and says ‘are we getting this right? Have we understood the problem correctly?’

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.

In some respects people driven digital health is a bit of a paradigm challenger, so I can see why some people reject it.  One: it’s about digital and, wow, do some people have some fears about digital. Two: it’s a about personal preference and choice which, again, some people have a problem with in a health context and Three: it’s about little messy things about people’s lives not big massive shiny things made out of numbers and it involves, GASP, spending time with people who might not even work for the NHS.

Digital gives us opportunities to do things in cost effective ways that we could never have done before.   The future is unfolding quickly and in the case of technology the rate of progress is still accelerating.  If the NHS isn’t really certain of people’s preferences about treatment and services; it is on even more shaky ground trying to guess people’s preferences around digital technology.

Science isn’t the same as healthcare

There are many things that we know to be true about what people should and shouldn’t do about their health. Science is awesome. But science and health aren’t quite the same thing.

Healthcare is what happens where technology, culture, practice, knowledge and resources meet people’s real lives.  Healthcare is not just treatments existing in a vacuum.  Healthcare a series of interconnected realms nestled within one another like russian dolls.  Healthcare for the patient, first and foremost, is what takes place in their lives – not only the illness or challenge they face but how that illness or challenge fits into their life as it is and their life how they would want it to be.  Hidden within that there are the person’s preferences, desires, wishes, dreams, aspirations and fears.   Wrapped around that are both the treatments, interventions and aids that person accesses in an effort to maintain or improve wellbeing or health and the systems by which those interventions are delivered.  Beyond that are the wider determinants of both that system and the of the life of the person who accesses it.

There’s a lot of russian dolls there.  And in a perfect world they’d all stack neatly one inside of each other.  In the messy real world they usually don’t.  Health is 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.  We’ve been great at knowing what works in the trial but awful at knowing works in the context of real life.

Solving problems that aren’t yours to solve

Historically the people who came up with medical solutions were not the same people who were their direct beneficiaries.  This has often meant that we have not only had to train our medics to be better medics; we’ve also fallen into the trap of trying to train our patients into being better patients.  The problem solvers have understood the world from the perspective of the problem solver only, not the perspective of the people who have the problem.  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.  Your healthcare intervention is part of MY life.

In health we often recognise that the ‘patient voice’ is important, but we actually have no idea what we’re meant to do with it.  We ask people what they want and then we scoff at them for coming up with daft ideas.  We ask people what they think of things and then use that as evidence of how right we we were all along.   We want people to tell us stuff about what we should do unless they start telling us stuff we don’t want to hear.

Often, the NHS has been blind to people as people.  While this has a terrible effect on patient care it also has a terrible effect on the development of services and treatments.  Often in the design of new services or interventions the actual patient, the person with the problem is the quietest voice around the table. Or in cases where the voice is loud, it’s the voice least likely to be put to a practical use.  We often don’t really know anything about the lives of the people we’re trying to help.  We can’t picture them, they’re just a hazy mass of statistics.

Involve people

You can’t design anything from statistics.  Design is about engineering solutions to problems that people have.  There’s a weird thing that often happens when the idea of doing something different in health: the wrong people do the wrong bits of the job.

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 and find a way of making sure each can use their expertise to make something 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.

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.   Sometimes the answer is a new thing.  Sometimes the answer is an old thing in a new way or at a new time or in a new place. Sometimes the answer turns out not to be digital at all.There are lots of techniques and structures for creating people driven design that can help you work that out, whether as a health professional or as a person without a medical title.  All of them go from working out with people a possible problem, to testing whether it really is a problem by checking with people, to working with people to find a solution to that problem that works for them.  All of them involve hanging out a lot with the people who have the problem.  Which is awesome and more people should do it.

So what’s this got to do with me?

You might be thinking: yeah, so what? Why should we think people driven digital health is important?

I think the area where our advances will be made, at least in the short term, are in the sweating of what we do have; finding out how to make what we have work better and taking what we know into areas of people’s lives in new ways and using a different set of resources.

In my view, we’ve reached, at least for the time being, the end of the era of big breakthroughs in health. At the very best we’re at the end of the era where a massive breakthrough will appear in enough time to sort out the gap between the funds we have available and the needs that we currently aren’t meeting.  A lot of people need things they currently aren’t getting.  We’re stuck with the treatments we have, many of the structures we have.

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.

In a world where digital will play a bigger role in our lives and where health care will become both increasingly complex and increasingly financially challenging  People driven digital health is about people making sure that technology in health care works for them, not against them.

It’s about people making digital powered health services that  don’t waste their, and everyone else’s, time.

If you want it to happen, stop trying to commission big as if you know everything and start to go small, asking people about what really gets on their nerves about how your service works.

If you want it to happen, you’re probably going to be commissioning as many processes as you are final products.

People powered digital health is about people making sure we get digital health care right because patients have to live with where we get it wrong.

Mark Brown is development director of Social Spider CIC.

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