Releasing the power of users…
Why healthcare innovation is increasingly going to rely on the insights of patients
These days there are very few certainties but this is one of them. We’re all going to depend increasingly on healthcare innovation for the quality of our future lives. Keeping ourselves healthy, coping with chronic ailments, living into old age with dignity and independence. We all want this — and we’re going to need all the help we can find to help us get there.
Which helps explain the huge and growing healthcare industry and the explosion of start-ups in this space. Healthcare innovation matters.
But look again at that first paragraph. This is not a sector we can be entirely objective about, looking in through the window at it. It’s about us, it concerns each of us as individuals, with all the diversity that implies. We all have a stake in healthcare innovation but we’re also aware that one size isn’t necessarily going to fit us all. So there is real scope for our voices to be heard and our ideas to be used. A classic opportunity for user innovation.
The rhetoric has been there for a long time. For example, back in 2002 the UK’s National Health service underwent a major review which concluded that “putting patients in control and helping them to be fully engaged in their healthcare is likely to be more cost effective and offer better value for money than if people are simply passive recipients of services”
But this isn’t just a nice-to-have aspiration. There’s good evidence that bringing users into the innovation equation is of value. We’ve known for some time that users have important knowledge and insights which can help shape the creation and adoption of innovation. Of course they do — they have a stake in the outcome. They have an incentive to innovate and they are willing to experiment and test prototypes which help move towards solving their problems and meeting their needs.
User innovation has always been with us, it’s just that we’re only now beginning to realise its scope. For example, a recent UK study suggested that over 10% of product innovations and nearly 20% of process innovations owe their start in life to user ideas.
Some researchers — notably Eric von Hippel who has pioneered studies in this field — see a new model of the innovation process emerging. Typically innovation is seen as some kind of funnel, in which many ideas are kicked around, promising contenders developed and eventually one finished version emerges to be adopted by others. But in the alternative user-led model we have more of an hour glass shape, with many ideas at the front end, some focused development of the core principle and then another explosion of variety as the idea is launched and users adapt and modify it.
We’ve seen the power of user innovation in sectors as diverse as agriculture and automobiles and we know that a lot of this kind of innovation has been happening for some time in the field of healthcare. Some examples highlight the potential of this approach:
- Lisa Crites, an American broadcast journalist was 42 when she was diagnosed with breast cancer. Following a mastectomy she was advised not to shower because of the risk of bacterial infection to her surgical drains from tap water. Her frustration at not being able to shower led her to experiment with various home-made solutions, originally based on plastic rubbish bags. After five different prototypes she finally came up with the design for the Shower Shirt, a water-resistant garment which allows patients suffering from a variety of conditions to take a shower safely. Now FDA approved it has improved the quality of life for thousands of patients around the world.
- Pau Bach was an industrial design student who became tetraplegic after an accident. Confined to a wheelchair he realised the market did not offer mobility solutions which matched his lifestyle; his frustration led him to develop a range of add-on hand bikes which gave him back some measure of independence. As he explained , ‘….I set out to make my own inventions. I wanted something that would solve my basic problem: autonomy and dependence…’. Once again the solution he found for his problem has ended up benefitting many others.
- Sometimes such user innovation takes an extreme trajectory; in the case of Tal Golesworthy his diagnosis with Marfan’s syndrome (a heart problem which led to his having an aortic aneurism) held out little hope beyond high-risk open-heart surgery. Instead he designed Exovasc, an external support for the aortic roof and persuaded a surgeon to implant the device. As a result he is still alive nearly twenty years later and so are hundreds of other patients who benefitted from his idea.
These and hundreds of stories like them can be found on a platform called ‘Patient innovation’ which has a simple purpose — to discover and diffuse user innovations of this kind in the field of healthcare.
Not all users want to be innovators…
But there are two problems with user innovation. First users aren’t equal. Some are classic user innovators, tolerant of failure and with a high incentive for innovation. The above examples are clear illustrations of this. But not everyone is a ‘hero innovator’ of this kind.
In fact we can identify a spectrum of user innovation ranging from those who are passive to those who are highly active. And we can identify at least three different positions for user involvement along this spectrum:
- the ‘informed patient’, equipped to use technology based on improved understanding — for example accessing and managing their own health records and making informed decisions about courses of action, becoming partners with healthcare professionals
- the ‘involved patient’, playing an active role within a wider healthcare delivery system and enabled to do so by technology. Here the approaches widely used in the commercial sector are finding increasing application with users actively engaged at the ‘front-end of innovation’, evaluating prototypes, providing valuable feedback to help pivot designs and acting as a ‘crowd-sourced’ laboratory for development.
- the ‘innovating patient’, providing ideas of their own based on their deep understanding of their healthcare issue. At the limit we find here the kind of patient innovators described above, prototyping and trialing their ideas out on themselves or their nearest and dearest.
How to engage users as innovators?
So users differ in how far they are willing or feel able to participate in innovation. Which raises our second question — how to involve them? Are there ways to help them articulate their ideas and concerns, maybe even ways to move them along the spectrum, to enable their voices to be heard? How can we release the power of users?
That’s a very big question but one which we are looking at in a major international project headquartered in Norway. The focus is on the tools and methods which might help user engagement in healthcare such as design methods, using tools to articulate and hear the patient voice (storytelling, journeys) through to online collaboration platforms.
One of the big areas we’re exploring is the idea of opening up boundary spaces. Innovation is interaction around ideas — that’s why prototyping is so important. Boundary objects enable different stakeholders to have their say. But what about environments which help? It’s the same principle, interaction for innovation, and essentially leads to a kind of space for co-creation. Boundary spaces are not simply rooms to meet but environments which are designed to be supportive in a enabling, catalytic and challenging way.
Interest in this idea of boundary spaces explains the explosive growth of innovation labs. These days every self-respecting company and indeed not for profit and public sector organisations will have its own version of an innovation lab. Whether you call them innovation hubs, maker-spaces, fab-labs, accelerators or hotspots you can hardly turn a street corner or a magazine page before you bump into another example. The names may vary but the underlying idea is the same — a place where people can meet to get inspired and supported by each other, to articulate and co-create. And one role they might play is to provide a context within which user innovation might be enabled.
Expectations run high but the very ease with which they can be established means that it is also simple to close them down again. Innovation labs and spaces need to be more than a chillout space with some beanbags on the floor and whiteboards on the walls.
Building a ‘living lab’ for healthcare innovation
So how might we use the idea of innovation labs as boundary spaces to engage with users? One role model is that offered by ‘living labs’, an idea which was born around the beginning of the century and which has gathered momentum as a way of enabling social innovation. Defined as ‘a user-centred, iterative, open-innovation ecosystem, living labs provide a coherent structure for inclusive innovation. The core principles can be summarised as:
- Co-creation: bring together a diversity of views, constraints and knowledge sharing to enable exploration of novel approaches
- Exploration: engage all stakeholders, especially user communities, at the earlier stage of the co-creation process
- Experimentation: prototype innovations with users while collecting data which will be analysed in their context during the evaluation activity.
- Evaluation: assess new ideas and innovative concepts as well as related technological artefacts in real life situations
The model is being used in the Norwegian context within the Smart Care cluster, a network of organizations (companies, local authorities, healthcare agencies, etc.) trying to develop and scale relevant innovations. It began life in 2019 as a firm-oriented testing centre but recognition of the wider role which users could play (especially at the front-end of innovation) has seen continuous adaptation towards playing a role as a boundary space. In its current form it deploys a range of methods including the idea of a ‘user café’- a café-like co-creation workshop with users, firms/organizations, and relevant parties.
Does it work? It’s still early in its life but the feedback from participating firms, local health authorities and, crucially, users suggests that it is providing something new in the innovation landscape. Its long-term success will depend on how well it measures up against an emerging ’good practice’ model for successful innovation labs.
And on how well it deploys one of the core principles in agile innovation — the pivot. Successfully developing innovations involves continual prototyping and testing, using the results of that learning experience to refine the next iteration of the innovation. It’s the same with ‘living labs’ — they need to adapt and grow on a continuing basis, informed by careful reflection and driven by a commitment to action.
It’s important that they do; our healthy future might just depend on them!
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