You can’t empower anyone to health
Health is always changing. Our job in health is not just to prevent death but to make it worth being alive
I’ve been asked to talk to you today about health, about community, about power and about technology. I’m not a clinician or a researcher. I’m sometimes a writer and sometimes a do-er. Sometimes I work on digital projects. Other times I give strategic advice. The common factor in most of my work is that I spend time with people trying to understand what their life means to them and what gets in the way of it being a good life for them.
I’m from the UK, a country going through an extended process of trying to work out just what the good life might actually look like and trying to settle on a future that feels best.
I went from unemployment and illness into social enterprise and then into running a magazine, One in Four, that was written entirely by people with mental health difficulties for people with mental health difficulties. What we did with One in Four was we showed that living with an ongoing condition is something that touches all aspects of your life, presenting you with challenges that those without that condition don’t face, and that life you lead is only touched in a tiny way by any services or support you receive.
Getting the right treatment and support is vital to everything else you want to do, but when you have it in place, you actually want it to be the smallest part of who you are. Often the public who receive health care are spoken of as if they are extensions of healthcare systems, as if they are malfunctioning cogs in an otherwise smoothly running machine. Healthcare professionals say ‘if only our patients would do what makes our system work best, then we’d have no problems at all. If only they’d know what they’re supposed to do then we wouldn’t need to boss them about.’
We should be high-fiving ourselves at people not dying
In the UK, we increasingly talk of a crisis of social care. More than ever before, more of us will live longer with a range of chronic conditions. We talk about this as if it were some kind of terrible calamity rather than an amazing achievement. We should be high-fiving ourselves everyday that life is no longer a short and dangerous affair cut short in what we increasingly now see as early middle age.
The challenge this poses us, though, is to move from just preventing death to improving what it means to be alive.
In the UK, 15 million people live with at least one chronic health condition. According the UK health think tank The Kings Fund, 58 per cent of people over 60 live with one or more chronic conditions, compared to 14 per cent under 40.
People who experience deprivation are far more likely to live with a chronic condition. As the Kings Fund say “people in the poorest social class have a 60 per cent higher prevalence of chronic conditions than those in the richest social class and 30 per cent more severity of disease.” The poorer someone is, the more likely it is they will live with a number of chronic conditions: “Some people living in a deprived area will have multiple health problems 10–15 years earlier than people in affluent areas.”
This fundamentally changes the job of health care and health promotion. Public health has always looked at prevention as the best form of action, but now our advances mean that even with concerted action to prevent ill-health, as much of our activity in healthcare is now in the space of people’s lives, not in a consulting room or bed. Making life the best it can possibly be is something that happens outside of the doors of the hospital or clinic and beyond the carparks and boardrooms and academic journals. It happens in the messy, glorious, confusing and amazing world of people and their lives together. For it to happen requires people to find themselves in each others spaces in unexpected ways.
Corproduction and working together
A lot of my work over the last five or so years has focused on two things: coproduction and digital health. Both of these things have the potential to make new things that can help people to have better lives. Both of those things are possible to do really, really badly. Both have in common the need to really spend time with people as soon as possible.
I’ve been working on a project for the last two years focused on understanding how coproduction actually works. Coproduction is, very simple, people from different walks of life finding ways to work together to make something that will benefit them and their community. It’s about how you bring lived experience, professional experience and technical experience together to both discover and to solve a problem.
If I have a heart condition that requires surgery, in most cases I wouldn’t really want other people with the same condition to work out how to do the surgery and to join in with scalpels and saws. What I would love is for people who have the same condition as me to help develop the aftercare for my condition; to develop advice, to inform future surgeons and clinicians of elements of the condition they haven’t experienced from the end of a knife in an operating theatre. I’d want their support in developing things that we could give to people just diagnosed or who have a vulnerability. I’d want help with living the best possible life from them. I’d want us to feel like a community who could go and change things for other communities. To get to that point requires trust and it requires the time to grow and develop relationships. And it requires and always includes vulnerability.
To work together well means understanding each others sense of vulnerability and exposure. I saw a talk recently from a spanish researcher who was training patient representatives to spot medical mistakes. They found that it was the patients who had the worst previous experiences that were best at reporting medical mistakes. Often your best partners in actually working out what needs to be changed, and how, are the people worst served by things as they already are. I saw an amazing worker in Finland speaking about a project providing healthcare services to sex workers. She said that many of their clients has worries about arrest, extradition and other organs of the Finnish state acting against them. She said that they had begun by describing these people as ‘hard to reach’ but she said that one of her clients told her ‘we aren’t hard to reach, we’re hard to convince.’
To be able to make better health together means convincing individuals and communities that you aren’t going to screw them over, waste their time or even use what they share with you to make decisions counter to their interests.
Through lots of discussion and interviews, our coproduction project arrived at some very simple principles for working together when you all have different skills, different experiences and different levels of power.
- Take positive and realistic action (do what you say you’re going to do)
- Make space to reflect, learn and adapt (we’re people, not machines)
- Give each other respect
- Stay true to yourself and honest with others (when we work with each other, we make a commitment to each other)
- Build a team to do the job (get the right people involved)
- Get the relationships right (spend time getting to know each other and don’t let each other down)
This is hard and it takes time and it often takes skills that are different from the actual skills of making things.
A community can’t pull itself up by its bootstraps
One of the consistent mistakes that is made in trying to create community responses to health challenges is simply going and asking groups of people what they want then telling them that what they want isn’t possible. When we are feeling ill, feeling ignored or feeling powerless, what we all want is for things to be better right now. Often when we have experienced disadvantage and exclusion, we feel like defining the future is not for us. We are told that we aren’t the people who make the future, it’s shiny tech billionaires and smiling politicians. The health changes we are talking about are street level, messy. Part of this work, this challenge, is helping people to believe that they can define the future, that the future isn’t something done to them. You can’t empower anyone. You can either give away some of your power to them, or you can help them to find where their power to define the future lies.
Health literacy, ‘activating patients’, community-based approaches, self-care: all rest on developing a hope and a vision that next year does not have to be like this year and seeing yourself as an actor in the present making a different future happen. Pragmatic positive change, however small, shows us that things can be different. Too often we focus on how much a system has changed, not how much the lives of those who rely upon it have changed. In trying to make the future it is often those with least resources who make the biggest investment but we act as if it’s the people with money and power and who are the healthiest who have the most to lose if it doesn’t work.
In the UK we often talk about focusing on ‘what’s strong, not what’s wrong’ based on the logic that people in need have too often been defined by their needs not their assets. Used in the right way, that can be an excellent foundation for exploring how more resources and support can be added to structures, beliefs, practices and relationships that already exist. Used in the wrong way it just ends up as a way of telling communities and individuals they just have to search for the hero inside themselves and pull themselves up by their bootstraps.
Digital and community: being together purposefully
When I approach digital work, I’m often guided by a design thinking approach. This means hanging out with people as much as possible to work out whether the problem really is the same problem you thought it was when you began. Then coming back to people when you have an idea. Then them telling you it’s rubbish. Then you trying again and again until you get something that seems to solve the problem. Having people shape the final form of something by seeing various attempts to solve it makes things better. This involves empathy, and listening and asking good questions but it also requires more than that.
Having empathy for people’s situation without that empathy fundamentally changing how you approach the problem is just being nice. And being nice doesn’t change things on its own. What’s needed is converting time hanging out and learning into practical actions that can be taken and practical insights that can be used. And that can feel like a lot of arguments until you get something that feels right and true. Working on things together means making safe spaces where opinions can differ without the whole thing crashing down. The largest temptation is to try to avoid disagreement and that way lies patronising the people you are supposed to be on the side of.
I did a discovery project in the London Borough of Hackney looking at the provision of advice services. We spoke to people who used advice services and they told us that in a crisis, they didn’t know what service to use, they wanted advice that was specific to the needs of their community and they told us that pride and shame played a big role in not seeking advice before a problem turned into a crisis.
We found out more about the problem by actually talking to the advice providers themselves. Providers of services have a culture and community, too, and their own myths and discomforts. We asked them what was most difficult about their job and they said it was people turning up without the right documents, not listening to the advice given, not putting advice into action, turning up with children or in highly emotional states. One organisation estimated that their advice was only put into action by about 30% of their clients.
They said the perfect client would turn up with all of their legal letters, a diary of events, would take notes and be calm enough to listen. When we asked them to reflect on that they were like ‘oh my god, our perfect client would basically be a secretary to the CEO of a small multinational corporation!’. And the things that made their job hard were the fact that people turned up to see them when they were in actually in a crisis and needed advice.
In the end we couldn’t get anyone to fund us to take forward these insights, so we published them so that someone else might.
The first digital project I worked on grew out of young people’s belief that family doctors didn’t understand them when they spoke about mental health. They wanted a translation device that turned young people’s speak into doctor speak. A terrible idea but a really excellent problem. What we realised by spending longer with the problem is that trying to change the practice of doctors towards young people was harder than giving young people a tool to help them to prepare what they wanted to tell the doctor.
So we made a tool called DocReady and developed it through lots of prototyping so that it did one very simple thing: it helped them to build a checklist of what you wanted to say by prompting you with all of the areas they might want to talk about. This checklist was something they could take with them to make it easier to actually say the things that meant a doctor would know to explore more with them. Simple, useful, no sign up or membership, no profit. It’s still online now for anyone who wants to use it.
Discovery work seems easy to skip, but it’s vital in understanding just what it is you’re trying to do. I gave a speech in Liege earlier this year about the importance of understanding where people are at in their lives and with their health as the key to making digital things that might help them. I think the same is true for any attempt to build things that people will use, love and take part in to benefit their health or the health of their community.
“Healthcare systems have healthcare system problems. People have people problems. Health care systems exist to deliver health care. That’s a difficult job, but it isn’t a new one. Who has access to these treatments, how and when is a political decision.
“People, on the other hand, have people problems. They’re experienced in their body, in their lives, in the things they can and cannot do. No one wakes up and feels ‘Today I am experiencing a healthcare system problem.’ Instead, people feel pain, discomfort, shame, embarrassment, horror, terror, boredom, frustration, relief, joy.
“Everyone has healthcare needs. Those needs don’t happen in healthcare systems, they happen in people’s lives. Having better health means having a better life. Increasingly, healthcare is becoming something more than the delivery of episodic treatment. More people live with more conditions for far longer. Who you are and where you are and what is happening around you is where your health happens.
Solving problems healthcare systems have in delivering healthcare is great but it isn’t the same as solving problems people have in their lives.
“Digital is often seen as a cost-effective way of delivering at scale healthcare interventions or shaping health behaviour. Digital solves problems like geography, time and communication. But even then, if the ways it tries to do that don’t fit with people’s expectations and people’s sense of their lives and what their health conditions mean, the most likely outcome is they won’t be used.
“Improving healthcare through digital technology is one important job. Improving people’s lives through digital healthcare is a different job. Often, the development of digital health products views the health of the person through the eyes of the healthcare system. If the patient would only use the technology in the way that it was intended, we think, the results would arrive.
“Patients are just trying not to feel awful. Creating digital things that actually find a home in people’s lives by making things better is a different job.
“The key to making the gains we need to is to understand what people want to happen in their lives and what causes them greatest joy and greatest discomfort. Our bodies terrify us. The reality of ill health is emotional as much as it is physical. Our bodies are a story that we live each day. This is the realm of emotion: of pride, of fear, of shame, of hope and of knowing the best thing and doing something else instead.
“Focus on joy and discomfort by taking what you know about healthcare and digital and exploring it with people in the context of their real lives.
“Spending time with people first is vital. Don’t just ask them if they like your product. People are polite and will help you get the best version of the wrong thing. Ask them why healthcare doesn’t work for them. Ask how they would like to feel. Ask them what they would like their world to be like. Find out what joy would look like in the solution of their problems.
“This is not easy if you are not ready to be surprised or discomforted. People often do not know what they want because they’ve never seen it. Digital offers possibility, but only if it’s a possibility that you want to explore.
Hack the things that keep people from health, don’t hack the people themselves
“Understanding what the gap is between what healthcare knows should make someone feel better and the way people actually think, feel and behave. People need different things because they feel different things.
“‘Does this thing get me closer to what I want from life?’ is the question people ask. ‘Does this thing deliver appreciable impacts to our health system?’ is the question healthcare systems ask.
“Working with people early, working with people often and working with people over time is the way to marry these two questions together. Work with humility, curiosity and solidarity.
“Begin with what matters to people. Health problems are lived by people. Digital tech shouldn’t be hacking the person with health needs, it should be hacking the things that stop the person being as well as they can be. To really make people’s lives better beyond the hospital or consulting room, digital technologists need to be the champion of the patient, not the system. Put digital possibility to work to answer the problems that people have. Be close to them.
“People are amazing: how can you make technology people want to hold close to their hearts if you’ve never seen what makes them smile?”
As with digital, so with community. What community approaches to health require is solidarity between those with skills and professional power and those who face the problem. If you have power to make something happen, it’s your duty not to hide that. The same for what you don’t have the power to make happen.
There is nothing that hurts more when you are really in trouble or suffering than someone with a comfortable life telling you you’ve been doing it wrong.
Writing for the Blagrave Trust, a UK charity, about empowerment, I said “A public service or charity isn’t empowering an individual or community by deciding to include them in a coproduced project, they’re asking for help. Asking for help should be recognised as such, meaning the work of providing that help is recognised as work, rather disguised by weasel words such as empowerment. A coproduced project will not undo someone’s lifetime of marginalisation. Including a community in decision making will not change the circumstances of that community, unless the thing that they are deciding and designing has the power and resources to do so.
“Instead of asking the community into their projects, truly coproductive charity or public sector workers would be prepared to offer themselves to the coproduction of projects defined, conceived and shaped by communities themselves. Where these relationships do not exist already is often a map of the ways in which inequality, marginalisation and prejudice have shaped who is furthest from getting to define how and whether their needs are met. Often those “from the bottom” calling for coproduction or user involvement are doing so because they feel their disempowerment as a sharp and present wound. Equality is not achieved by those with power and resources declaring “we are all equal”.
In his 2015 book ‘The Health Gap: The Challenge of an Unequal World” Michael Marmot writes: “We now know that the things that really matter to us in our lives, minute to minute, day to day and year to year, have a profound impact on our health. The conditions in which people lead their lives… are the main influences on their health. The central issue is that good conditions of daily life, the things that really count, are unequally distributed, much more so than is good for anything, whether for our children’s future, for a just society, for the economy and, crucially, for health. The result of unequal distribution of life chances is that health is unequally distributed. If you are born in the most fortunate circumstances you can expect to have your healthy life extended by nineteen years or more, compared with being born into disadvantage. Being at the wrong end of inequality is disempowering, it deprives people of control over their lives. Their health is damaged as a result. And the effect is graded — the greater the disadvantage the worse the health.”
If we are talking about empowering communities, we must understand what troubles them from their perspective. We need to get to know them before we decide on their behalf what problems they need solved. There is nothing that hurts more when you are really in trouble or suffering than someone with a comfortable life telling you you’ve been doing it wrong. Becoming unwell is a source of shame and embarrassment, an emotional experience as well as a practical one.
Advice about what someone in a nice house, with a nice job, and a loving family, and all of the civic connections and benefits education and privilege brings would do is not going to help. Health literacy that amounts to little more than lecturing people to take greater control of things that move further from their grasp every time they reach for them is little more than shaming people for becoming ill.
We need to be pragmatic, we need to be practical but even more than that we have to be human. Often the communities and people that need help are often the communities that are furthest from the resources needed to make the change they want to see and to create the conditions that make life good. Being ill can be a full time job. Chronic conditions can be full time jobs. Being poor is a full time job, too.
Being with people is a special skill. Really listening is even harder. Finding ways to work together to change things harder even than that.
I don’t think you can empower people. I think you can help to show that a different future is possible and then put your power to help make it happen at people’s service. We need to believe in people and in getting to know each other and in being honest.
Our own state of health, how we understand it and how our community works are where the real determinants of health lie, so that’s where we must innovate and do things that haven’t been done before with people who have never done them before.
We need to believe that together we can take real practical actions in the present and have difficult conversations and make mistakes together. We need to honourable, we need to turn up and do what we can and we need to make our solidarity with people and communities not with our professions and with our institutions.
Health is changing and will always be changing and we need to work together because we believe a better future for those in pain and those in sickness and those with least power needs to happen sooner, rather than later.
Or even worse, not at all.