This week the UK, Nordic and Baltic Prime Ministers met in Oslo at the Northern Future Forum to discuss health technology. Here are reflections from the contribution I gave to the summit on why health technology needs to be designed around citizen needs.
Citizens interact with health technology in a number of ways, including as patient, consumer and participant. Understanding what citizens care about and what they want from technology isn’t just an optional add-on, it’s necessary to harness the huge potential of technology to transform health.
Firstly, as patients.
People want excellent clinical care underpinned by technology that is safe, accurate and effective. Developments across physical, biological and digital domains are leading to robotics in surgery, personalised medicine using whole genome sequencing and Artificial Intelligence (AI).
Technology like these can be life-enhancing as well as life-saving. But patients are not just passive recipients of these technologies, they have an active stake in how they are designed and delivered.
As we set out in Nesta’s report Confronting Dr Robot, for example, AI could be a powerful and positive disruptor in healthcare. But it could also become an unwelcome ‘bureaucratic’ step before seeing a doctor - with over-standardised conversations or excessive monitoring. This could mean people feel disempowered, rather than empowered. And patients are also interested in wider questions: who is liable for an AI-based error? And who has control of their data?
Involving citizens in the design and delivery of health technology is needed to both design out problems and address fundamental concerns. By doing this, taking a citizen perspective not only improves the technology but creates an ‘authorising environment’ for its introduction.
Secondly, citizens as consumers.
People want technologies which are convenient and easy to use in their everyday lives. There’s been good progress in focusing on user experience and need. The NHS App launching this December will provide a simple and secure way for citizens to access a range of healthcare services on their smartphone or tablet, and should transform ‘consumer’ experience when interacting with the NHS.
But there’s also an opportunity to take the citizen perspective further.
It has been estimated by the Robert Wood Johnson Foundation that only 10-20% of our health is accounted by healthcare services, while at least 50% is driven by social and behavioural factors. So, there’s a real opportunity for health technology to not just improve existing health services, but address the underlying drivers of health - particularly social and behavioural factors.
We’re beginning to see this through things like ‘digital medicine’ for mental health. Companies like IESO Digital Health and Big Health with Sleepio are providing clinically-proven online therapy for sleep problems and anxiety. These can change behaviours, improve outcomes and lower costs – and in ways that are convenient and empowering for citizens.
And finally, citizens as participants.
Here we have citizens actively engaging in their own health on an ongoing basis. People are coming together, using tech platforms like HealthUnlocked and PatientsLikeMe, to share their own health experiences – and data – to connect to each other and to healthcare professionals.
We’re particularly seeing this with groups of people who share a long-term condition such as diabetes or heart disease. This builds a valuable community where people share their experiences and give mutual support. This can de-stigmatise health conditions and be a safe place for people to explore and understand their health. We’re seeing the development of high trust communities – and that’s a holy grail in terms of emerging technologies.
Secondly, this creates a step-change in data. Participants can generate and use their own health data from smartphones and wearables. For example uMotif’s 100 for Parkinson’s project used an app for people with Parkinson’s Disease to enter how they’re feeling, when they took their medication and track their tremors using the accelerometer in their smartphone. By capturing their own health data, patients saw a 10% improvement in their adherence to prescribed medications, and reported a better consultations with their clinicians.
Going further, this patient data can be combined with clinical data – to create pools of real-time, longitudinal data about that person - where citizens are much more informed and clinicians can respond in a timely way, that’s also personalised to that individual. An example of this is the work of Patients Know Best, who have a secure platform that allows people to see all of their health data in once place – both their own wearable data and clinical records together – and to interact directly with their clinicians about their treatment. In one example, a group of 4,000 patients with Inflammatory Bowel Disease became more confident and engaged about their condition, allowing them to report flare ups earlier, saving the healthcare system £4m by using a lower cost treatment.
That’s great in terms of empowered and engaged citizens – and informed clinicians able to improve individual care.
And further still, that same pool of data can be used for research and development to improve services and drive new research. Because in high trust communities like these, citizens are willing to not only support each other but to share their data with R&D in the public and private domain, as long as the right controls are in place.
So, engaging with citizens as participants in their health is a “triple win” of data that’s useful to citizens, clinicians and researchers. That’s even more fundamental than just digitising individual services or introducing standalone apps. And the key starting point is understanding and engaging with people as active participants.