The power of me: the citizen at the centre of a data-powered collaborative health economy
Many people do not feel in charge of their health and expect others to manage it for them when things go wrong. But more and more of us are starting to use our biologic, physiologic and behavioural data to understand what could help us lead healthier and happier lives. Wearables are becoming more sophisticated, like Apple Watch and soonFitbit’s smartwatch armed with biometric sensors that help people track their health using data, and such portals like Patients Know Best (PKB) allow patients to access their medical records online and share with their doctors.
These tools are accumulating an impressive user and evidence base showing that putting people in charge of their health works, and costs the NHS less too. Yet while we are generating vast amounts of data through our phones and wearables, it has helped to create fortunes for some of the most valuable and profitable companies in the world: Google, Apple, Facebookand Amazon. This has led to concerns about their excessive power, which surface occasionally in controversies like the ‘legally inappropriate use’ of NHS data in the Royal Free Hospital by Google DeepMind and how psychometric big data mined from Facebook pushed Britain into Brexit and Trump into America.
Very soon, however, this ‘data power’ is about to shift to the individual with a new EU directive, the General Data Protection Regulation (GDPR) coming into force in May 2018, that will legally oblige companies to ensure all personal data they hold is secure and private, and has been consented to BEORE any data is collected. Organisations found in non-compliance will face heavy fines: €20 million or 4 percent of global revenue per infraction. This could mean millions, or even billions of dollars in fines for large companies, and huge reputational damage too- yet only 30% of UK businesses are currently preparing for it (according to a report conducted by YouGov and commissioned by law firm Irwin Mitchell in May 2017).
Shouldn’t businesses be more attuned to what may happen when normal citizens begin to realise the value and power of their data? While incumbent businesses slumber, there is a growing number of start-ups emerging that realiseonce people get financially rewarded for their data they will take a greater interest in controlling it- start-ups like People.io, a European start-up that is giving people ownership of their data through a ‘firewall for people’; Meeco, a life management platform or ‘API of Me’; and Consentua a new consent management API and service, giving people choice and control over how their personal data is used.
Last week saw the launch of the report, Unleashing the Potential of Health and Care Data, byFuture Care Capital, which sets out how the UK can become a global leader in harnessing the power of data and emergent technology to transform health and care outcomes. However, this utopian vision of a data-driven health economy depends on citizens taking control of their data and Government committing to safeguard their privacy through a commitment to world class data ethics.
Technological developments underway will help citizens control and exchange their data, especially blockchain technology. Blockchain is based on the concept of a distributed ledger database, which ensures trust, transparency and security of data in a way that many predict will completely disrupt the internet, change how we work and create a more equal society in years to come.
Whatever the grand predictions, blockchain has huge potential to ensure that it is not just companies but individuals who can get real value from their personal data. Blockchain allows people to decide who sees their medical records and puts them in control with what data they share with whom and what action they want to take- for example, sharing their genomic data with a doctor who can help them assess their risk of a particular condition. Because blockchain is so secure, people will become more comfortable with sharing their data across the healthcare ecosystem and this could also yield hugely important insight to improve health at a population level- and this in turn could drive more effective, preventative care. Citizens, as the gatekeepers of their own data, could be incentivised to share it with pharmaceutical companies and insurance firms who could then use the insight from this data to develop better drugs, more quickly, at lower cost and reward people for healthier lifestyles.
Estonia is leading the way in the blockchain revolution already. Its Patient Portal gives citizens access to medical documents, referral responses, prescriptions, and insurance information. Individuals can also use the Portal to declare their intentions regarding blood transfusions and organ donation. In 2015, over 80,000 medical certificates were forwarded electronically to its Road Administration Agency to facilitate driving licence renewals.
The effect on individual empowerment and on medical transparency is transformative and is shedding light on how a new collaborative health economy could unfold- where people are in control- enabling individuals and organisations to transact directly amongst each other, while reducing the power of gatekeepers and using data for wider societal good.
Tina Woods is a health contributor to D/SRUPTION Magazine where this article first appeared.