The future is now for personal data in health

It’s an incredible exciting and dynamic time to be working in health as the momentum and urgency around privacy and the role of personal information continues to accelerate.

Supporting technologies such as Apple, and others are flourishing with many exciting collaborations and projects happening across the sector. Across the health landscape, there continues to be a strong rise in conversations around the need for greater patient access to health records. There is increased debate, too, about the benefits of augmenting this with wider personal data to better understand individuals and their needs as well as empower them.

Great leaps have also been made, both in the health industry and among the wider public, in terms of understanding the benefits this could bring, and the technical and trust steps needed to make it happen at scale.

The changing landscape

Putting individuals at the heart of their health data has been a persistent global trend in recent years, and was highlighted as part of the global Future of Patient Data report report in 2018.

This move to empowering patients with their data has been driven in part, of course, by the EU’s GDPR legislation, which raised the bar around personal data privacy and ownership generally.

While there have certainly been any number of high-profile data breaches across industry, as well as healthcare, this move is also being driven in large part by an increasingly digital world.

Consumers of products and services expect them to be digital and on demand as standard, along with high expectations around convenience and control.

This, in turn, has seen the conversation shift from one of organisation-centric interoperability to one of enabling data portability between different organisations, with consumers and their consent at the heart of what is shared and with whom.

This vision of a future where data flows freely has strong support from respected industry names such as Sir Tim Berners-Lee and Apple.

More recently,  we’ve seen  organisations looking at their data strategies, driven by the need to focus on transparency and trust as well as provide new value to consumers. This isn’t limited to innovators and start-ups – big industry names including Barclays, the BBC, BT, Centrica and Facebook are taking steps towards a more data-mobile future as part of Ctrl-Shift’s ground-breaking data mobility project, for which is the data facilitator.

What does this mean for healthcare?

Healthcare has historically had a challenging ride when it comes to IT and data, in particular moves to enable sharing of information.

As we move into a new era where the need for greater prevention as well as more personalised medicine is high on the agenda, the current organisation-centric model will struggle to meet the changing tide of consumer demands while addressing the key issues of personal data, privacy and security.

More personalised medicine, or progress in using data to drive research and innovation, cannot happen in a world where data cannot be freely exchanged.

Furthermore, wider longitudinal data has become increasingly important to provide a more  rounded view of an individual than simply their healthcare interactions. To take the medical adage of “80 per cent of the diagnosis is in the history”, even today some of that history may be missing from the medical record – but much of it may well exist in other data sources.

This rapidly changing landscape should not only inspire us to think beyond today’s traditional health IT models, but also allow us to design radical new models of person-centred health and care.

As we  enter this brave new world, we need to evolve quickly to ensure privacy, transparency and trust are at the heart of sharing  data, and ensure that benefits are not marginalised

Putting people at the heart of their health

To do this, it is crucial that, across the health industry generally,  we build better relationships with individuals to ensure that they can engage in their health and understand the benefits of doing so. We need to give them the digital skills and tools to enable this, and ensure the safe and effective use of data within this ecosystem.

In this new world, a lifelong health record will likely be made up of data from across the individual’s life, such as wearables and consumer data, not just traditional health records.

Take mental health as an example. While standard anxiety and depression baselines are evidently helpful, it is wider interactions and data which will help build a deeper and more meaningful picture of what is going on with any individual. Their activity, sleep or social interactions or other signals from their banking and social data may give important insights into their lifestyle and behaviours.

What’s the solution?

Couple this broad spectrum of data with an increasing mobile population where people move around and expect to manage their health at a time and place which is convenient to them, and it is evident that there is no single organisation which can enable all of this.

Each individual is the expert about all the products and services they engage with and where all their data is. Importantly, they are also the only one who indisputably has the rights and means to mobilise all of this.

By placing individuals at the heart of what we, as data facilitators do,  we can empower them with all their information. Better still, in doing so it enables the health ecosystem to innovate and build on this to provide them with technology and services fuelled by this data. This will help them understand their health, wellbeing or other aspects of their life in far greater depth with far greater ease and far greater privacy and security.

Placing individuals at the heart of their data will enable an open and transparent world where individuals can trust the organisations they engage with, explicitly understand how their information is used, and directly gain value from this.

While this landscape is moving rapidly, in more traditional healthcare settings there is a great deal of education and engagement needed to move this conversation along and catch-up with a rapidly evolving landscape.

Here at, we are on a mission to empower individuals with all their data across all their life and provide a safe and secure means to own and share that data. Our Private Sharing ™ SDK provides a way for organisations to integrate with our platform and securely give and get data from individuals in a way that fully complies with legislation such as GDPR.

With access to 1,000s of data sources including social media, banking, health records and devices, there is no easier way for individuals to take ownership of their data and for organisations to innovate around them on the building blocks of explicit and informed consent.

Working examples using the platform include traditional health records with links to GP and hospital records in multiple countries including the UK NHS, Iceland and the US. We support a variety of systems and standards including BlueButton, CDA, HL7 FHIR with established connections to the likes of EMIS, Epic and Cerner and more to follow.

Join the conversation

As we work to help shape this new global patient-centric landscape, and the very future of our health and wellbeing, we need more voices to join the conversation. will be collaborating with like-minded healthcare, industry and technical partners, and would welcome input and contribution from anyone, individual or company, who wants to shape the future of health.

We’ll be holding various Twitter chats, workshops, webinars, pilots and other projects over the coming months, on topics including patient experience, privacy, security, consent, interoperability and more – and we want to hear from anyone with experience or opinions on these.

You can find out more about’s health community, or sign up, here.