People Power Through Data
The time for open data in health is now
Word is out that Matt Hancock, new Secretary of State for Health and Social Care, wants to ‘disrupt healthcare’. Getting people to exercise or socialise rather than take pills is sensible advice and certainly disrupting the mindset of the public addicted to the quick fixes and convenience of our increasingly online world.
Last week saw the launch of the most exciting thing to hit healthcare – a commitment to an open approach to all things digital and data with the publication of The Future of Healthcare – Our Vision for Digital Data and Technology in Health and Care. Good news, since the data infrastructure is not fit for purpose to leverage cutting edge technologies here now to transform health and support preventative, predictive and personalised care. Open standards, secure identity and interoperability need to be in place for the safe and effective use of these technologies, ensuring that systems talk to each other, that data can be shared, and that the right data gets to the right place at the right time.
Let’s not kid ourselves
The technical challenges are huge with data ‘readiness’ (i.e. data that is digitised, labelled and machine readable) being a humongous one. Let’s not forget the vast amounts of data in silos, locked away in databases that do not connect, the (non-digital) data scribbled on bedsides and in doctor’s notes. While these seem almost insurmountable, the real challenges are cultural and organisational.
We need to look at how digital technology and data can solve the really big challenge in healthcare today – which is to focus more on how to keep people well and out of the system – eating well, sleeping well, living better, dealing with poverty, addressing loneliness – the biggest killers and the biggest drain on NHS and social care resources. diabetes alone consumes 10 per cent of the NHS budget – the vast majority of which is entirely preventable. It is unsustainable for the NHS and social care to look after a growing older population becoming more dependent on the system; and why should we continue in this crazy status quo when we have the tools and technologies to keep people healthier, less lonely and in their homes independently for longer.
So let’s get on and do it
This is where the vision for an open data ecosystem becomes really exciting. With the government’s support of open data we can really start to dream big and do something amazing, leading on the global stage. Especially with the significant funding from government with the four Industrial Strategy Grand Challenges (AI & Data, Mobility, Clean Growth and Ageing Society) to help Britain become a leader in the world with ethical use of data, we are ready to go. But we need to make sure we have a sound data infrastructure in place, guided by ethical principles and agreed Open Standards.
Let’s make sure we do this right and in a way that allows the citizen to be in control – with data comes knowledge, and with knowledge comes power. Let’s empower people through data. This could be the most important weapon we have to persuade people to take charge of their health, their lives, to nudge ourselves in the right direction, choosing the right behaviours to increase our wellbeing, and hopefully happiness. Sounds utopian, crazy even?
Maybe not. Earlier this month, Tim Berners-Lee, the inventor of the web, launched Inrupt, a venture backed start-up to decentralise the web. Berners-Lee and other internet pioneers have been scheming for years on how to undo the unintended consequences of the internet, revolving mainly around the monopolistic power of the tech giants like Facebook, Google and Amazon that have profited from centralising it and controlling the data of citizens. Berners-Lee is not the only one with this vision. Organisations such as MyData, DECODE, Hub of all Things (HAT), Meeco.me, and Mydex, and others more related to health like Midata.coop and PatientsKnowBest, are all working towards this goal to redistribute the power and value of data – the world’s largest asset that only grows the more it is connected.
Katryna Dow, Founder & CEO of Meeco.me, says “the ultimate goal of enabling access to personal data is for personalisation; personalised health, education and finance. However, society won’t reap these transformational benefits unless data control is transparent, secure and equitable. It is only from this place that a trusted data ecosystem can flourish.”
There is a lot of talk about how blockchain could be the technology we need to give ‘power back to the people.’ However, while great for dealing with critical, discrete, transactional data, it is not so great for the relational data that is being collected on our daily lives in ever-increasing abundance. What’s more, it is also highly questionable when it comes to dealing with personal data. Nevertheless, the advent of GDPR as a catalyst means we can start to go back to the original vision of the internet, where individuals control their own data.
Learning from Europe
We can learn a lot from what other countries in Europe are doing with open data and blockchain technologies. Estonia is already leading the way here with its e-Citizen programme, with X-Road as its backbone allowing the nation’s various public and private sector e-Service databases on the blockchain to link up and function in harmony. The Estonian healthcare registry is run on the blockchain, allowing patients to own and access their own health data from anywhere in the world. Most banks have closed their offices, as 99 per cent of banking transactions occur online (with 67 per cent of citizens regularly using cryptographically secured e-IDs). By 2020, e-tax will be entirely automated and i-Voting, civil courts, land registries, banking, taxes, and many other e-facilities will allow citizens to access almost any government service with an electronic ID and personal PIN online. The boldest and newest initiative is the e-residency programme in which Estonia issues electronic IDs to global residents anywhere in the world, allowing people to start and manage global businesses in a trusted EU environment.
Finland is driving the concept for ethical open data ecosystems through its work on IHAN (International Human Account Network), a ‘human driven data economy’ involving the creation of a method for data exchange and a set up of European level rules and guidelines for ethical use of data. SITRA is working with Estonia on two data exchange layer pilots to test the suitability of Estonia’s X-Road solution for the organisation and provision of social and healthcare services.
Closer to home, in the UK, we could learn a lot from what has worked in other sectors and industries. Look at what has been happening with Open Banking, a change that ‘puts you in control of your data: an easier way to move, manage, and make more of your money.’ Open Banking was driven through new regulation that mandated that banks ‘open up’ and give consumers back control of their data in line with ‘data portability’ requirements of GDPR. The Open Banking Standard is spurring innovation and disrupting the big banks, while giving citizens rights and creating an open, free market. Open Banking is now moving into the realm of Open Finance, potentially disrupting huge swathes of other businesses in the finance sector, including insurance and pensions.
“Open Banking creates design patterns which can be replicated across other sectors, and represents one of the most significant step-changes in banking in a generation,” according to Gavin Starks, Founder, Dgen & Co-chair of the Open Banking Standard working group.
Why not taken Open Banking into Health, as mooted in the recent AI Select Committee report, AI in the UK: Ready, Willing and Able? With the growing ageing demographic, the lifestyle driven chronic disease burden and health and a social care system under intense strain, harnessing consumer data to drive a prevention agenda in health needs to be prioritised and understood in terms of how this can benefit the NHS and social care and achieve the triple aims of improved outcomes, increased efficiency and improved equity. The opportunities for business and society that could be released through innovative business models, improved data quantity, quality and sharing (leading to improved efficiency and cost) and ultimately vastly improved predictive, preventative and treatment solutions, are significant.
All consumer data organisations, including banks, supermarkets, energy firms, retail firms and leisure services have access to data that could be very useful in the preventative health setting, especially in older populations who would like to live better and independently in their homes for as long as possible. Data-driven solutions could also potentially transform the lives of carers, who are hugely undervalued and often neglected in the wider public debate.
It is up to us how we confront and rise to the challenge and turn it on its head, to see this as a huge, positive opportunity for transformational, even radical, change that can make all of our lives better. It is not just up to government, the NHS or social care to be ultimately responsible. We, the citizens and the consumers must use our spending power, knowledge and sense of agency (and urgency) to take control and help us move away from the ‘sickcare’ to ‘wellness’ model.
But thank you Matt Hancock, for your vision to disrupt healthcare – and for supporting the creation of a data infrastructure and accompanying standards to facilitate this shift.
Tina Woods is CEO and Founder of Collider Health, a health innovation engine that works with corporates, government, start-ups, third sector and investors to accelerate innovation and transform health with sustainable impact at scale. She is an ecosystem architect and builds collaborative networks and strategic partnerships to facilitate smart investment. Tina is chair of Future Health Collective, a multi-disciplinary, cross-sector group geared to foster collaboration and radical innovation in areas of unmet need in health and social care.
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