Meet a remarkable woman. 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.
She’s not alone – another example is Pau Bach, 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.
Or Avi Yaron who was diagnosed with an inoperable brain tumour and who designed a miniature 3D camera to enable surgeons to see the deep tumour accurately enough to enable the precision operation to remove it. His Visionsense system which involves a chip with complex image processing algorithms is now licensed by the FDA and has saved thousands of lives in its ten-year existence.
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.
The power of user innovation
It builds on a key theme we’ve known about for a long time in innovation – users can and do innovate. That shouldn’t surprise us – after all innovators like those described above want to solve their problems. As Eric von Hippel, one of the key researchers in the field explains, they have a high incentive to innovate and they’re not afraid to experiment, prototype, develop good enough solutions which do the job. What they don’t have necessarily is the desire or experience to spread their idea – if it works for someone else that’s an added bonus and they’re happy to share but their prime motivation is solving their own problem.
Frustrated parents have been the originators of multiple innovations in the childcare space –
disposable nappies, foldable buggies and spill-proof cups are all examples of game-changing products which began life as user ideas and then moved to the mass market. Most ‘extreme sports’ begin life amongst communities of thrill seekers trying out something new – they have the incentive to innovate. Later their ideas become mainstream – examples include skate boarding, windsurfing and kitesurfing.
Or take something as mundane as furniture – as IKEA have discovered there are millions of ‘hackers’ sharing their ideas for modifications and adaptations of its furniture – in the same ways as those Model T farmers did. In fact research suggests that close to 20% of products actually start life as user ideas which are then taken up and refined by manufacturers.
This effect is even more widespread in service where it is possible to make changes more swiftly Frustration with the way a service is delivered can quickly lead users to suggest modifications – and occasionally to set up their own business which improves on the one they’ve been annoyed by. Legend has it that Netflix began life in such fashion, Reed Hastings being annoyed enough at late rental return charges that he developed an alternative business model.
And in the field of processes we’ve known about this for a long time – those closest to the problem, often most frustrated by it, are also potentially a rich source of improvement ideas. This lies behind the idea of employee involvement, tapping into the suggestions of all employees, a concept which can be traced right back to the Middle Ages. Companies like Toyota have derived considerable competitive advantage through harnessing this approach and it is formally recognised within the company as a key part of ‘the Toyota Way’. A key precept is Gemba Genbutsu – ‘go to the real place’ – and it builds on the core idea that those closest to the source of a problem often have the most insight into how to solve it.
Users as diffusers…
There’s another reason why user innovation is important; it’s not just about enriching the variety of ideas and the depth of insight available at the front end. It also has a powerful effect downstream as we think about spreading and scaling an innovation. User insights make available the ‘sticky’ knowledge about the user’s world, the context into which such innovations need to fit. As diffusion studies regularly show, compatibility is a key issue – making sure an innovation first well into the potential adopter’s world. User innovation offers a powerful key to unlock this problem.
One important consequence of the growing body of research and practice around user innovation is the emergence of a new model of innovation, dubbed ‘free innovation’. This argues that users have rich insights into solutions which solve their problems and which may diffuse to others with similar experience. But most user innovators lack the skills or motivation to make their products at scale and spread them across a wider market. For companies the reverse is often true l; they have scale-up capabilities but are often put off early stage innovation ideas because of the costs and risks of market research in highly uncertain space. Put the two together and there is the potential for a new approach to innovation building on their complementary strengths.
Hearing user voices in healthcare
Let’s return to the world of health care and look more closely at the pattern of innovation emerging there. We’re familiar with the crisis – the huge rise in demand and the growing inability of systems to meet that (whatever the payment/reimbursement regime) It’s a perfect storm but one which innovation could play a key role in calming. In particular new digital technologies offer enormous promise to improve quality, reduce costs, raise productivity, extend reach, etc. But there’s a risk in all of this that the wave of enthusiasm from the supply side and the demand from the administrators and clinicians on the demand side creates a huge push, a wave which might swamp those at the very end of the user spectrum – the patients.
We know from many studies that technology is not neutral; it is something shaped and modified by a
‘dominant design’ emerges and establishes the trajectory for future development which makes changes and modifications difficult. On the plus side this accelerates the rate and broadens the scope of diffusion but there is an accompanying risk of lock-in to a particular configuration. In a field like healthcare this might mean that we end up with solutions which may not be quite what users want – for example, ‘smart homes’ filled with digital technology in which the inhabitants feel imprisoned or under surveillance.
It makes sense to try and think about these issues at the outset when there is ‘design space’ available – and that’s a long-established theme in innovation studies, currently going under the label of ‘responsible innovation’. Responsible innovation research has generated a useful toolbox of approaches to help bring user perspectives in at an early stage – and much of today’s ‘design thinking’ builds on those approaches.
Which brings us back to user innovation. Given the potential benefits which come form that approach wouldn’t it be worth exploring how users – specifically patients – might participate more fully in the innovation process?
Responsible innovation in digital healthcare
Exploring this theme of responsible innovation in digital healthcare has been the focus of a major
a new book. It looked at a variety of different countries and examples of the development and implementation of new healthcare technologies – including the ‘patient innovation’ research described at the beginning of this article.
The key messages can be summarised as follows:
Digital technologies hold enormous promise and are attract widespread interest and investment – new opportunities for start-ups, new directions for established businesses.
Smart players adopt an ‘agile’ approach, working closely with their potential users to prototype, test and pivot their ideas to get the best fit with needs and means.
The really smart ones recognise that healthcare has many different stakeholders and ‘users can include both clinicians and administrators as well as the final end user – the patient. Finding ways to capture these wider sets of insights helps shape solutions which are better and which have a better chance of widespread
Users can and do innovate in this space as much as on farms or amongst parents. But importantly we need to recognise that the desire and capability for user innovation is not evenly spread across the population. Not every user wants to or is capable of being the kind of ‘hero’ innovator we saw at the beginning of this piece. In fact there’s a spectrum from passive to active user innovators.
In the book we explore three positions along this spectrum, all of whom can make a key contribution to the innovation story both at the front end and in downstream diffusion to scale.
the ‘informed patient’, equipped to use technology based on improved understanding; today’s patients have available opportunities search for information with regard to their situation, to access and manage their own health records and make informed decisions about courses of action and to become 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 at the start of this article, prototyping and trialing their ideas out on themselves or their nearest and dearest.
Perhaps the biggest challenge is to find ways to move patients along this spectrum, to empower and enable them to contribute more the process. And this highlights the next stage of our research – exploring mechanisms for doing so.
There are many, from application of design methods, using tools to articulate and hear the patient voice (storytelling, journeys) through to online collaboration platforms and shared exploration spaces – innovation labs. The application domain is huge, from new services to help the elderly live more independently at home, through reducing the demand on hospitals by wider use of telemedicine, through to engaging users as clinicians.
Why is user innovation important in healthcare? There are clear arguments emerging from our research and from many other studies that show it offers access to better-quality front-end designs – and it also smooths the downstream adoption pathway. And there are growing opportunities for ‘free innovation’, building in user insights to help create sustainable business models for healthcare innovation.
But perhaps the biggest reason is self-interest. Like it or not we are all going to be involved in healthcare at some stage in our lives, so finding new ways to enable more extensive user inclusion might be an investment in our own treatment. As users we have a high incentive to be part of this innovation system – what we need are the tools to help us do so.