Jonathan Bingham, Co-founder and CEO of Janeiro Digital joined Dr. James Somauroo on the Health-Tech Podcast. Together they discussed the company’s journey and explored why decentralization is the key to unlocking a future of safe and secure ethical data-sharing in healthcare and beyond. Listen in to the full episode here.
Innovation runs in Jonathan and Justin’s DNA. After 9 years running security and insider-threat company Intrusic, and music-centered social network Surrge, the duo turned their attention to something new. Harnessing their expertise and success in both B2C and B2B technology, in 2009 focused on a new venture.
Dovetailing their respective strengths – Jonathan in sales and operations and Justin in technology – Janeiro Digital was born with a mission to enable other organizations to realise their digital transformation ambitions.
From their core business, the company soon realised that there were huge similarities in the big enterprise applications they were developing for clients. So in 2015, Janeiro Digital launched XFORM as a foundational technology to build solutions faster and in a more stable way, which created a significant differentiator that set them apart from their industry peers and competitors. Two years later, this work saw the team recognised by world renown analyst firm Gartner as a ‘Vendor to Watch’.
A Web Reborn
In 2018, Jonathan and Justin discovered the world of Solid and the decentralized web when they started working with founder of the world wide web, and co-founder of Inrupt, Sir Tim Berners-Lee.
It was already clear that the centralized web that we know today is not the web that Sir Tim envisioned in 1989. In the current internet framework, data is predominantly centered around and controlled by large organisations rather than sharing information among individuals, which was the original principle.
Inspired by this perspective, Janeiro began transitioning XFORM into a platform that could embrace the possibilities and potential of the decentralized web. Through this process the company set about figuring out how to leverage Solid as a means to safeguard the future of data and information sharing. The challenge then, was that Solid sits above the existing centralised web system, but it’s Personal Online Data Stores (PODS) did not have a mechanism to connect to these external systems and services.
XFORM presented a compelling opportunity. The open standards-based software platform formed a digital bridge that made it possible to integrate PODS within organisations that require and utilize data without the adaptation of any centralized structures, systems and services. As a consequence, XFORM became the key that unlocked a new world of consent-based, connected data sharing, enabling individuals to truly control and benefit from the value of their own personal data.
Together, Jonathan and Justin decided the best strategy to accelerate adoption of PODS would require a top-down approach: partnering with large organisations, institutions, and even countries who could get immediate business value at scale by deploying PODS on behalf of their constituents or users.
The brothers also pinpointed the urgency of addressing some of the most challenging and sensitive issues of interoperability and effective data sharing – within healthcare. Access to and security of consistent and universal patient records is a widely-acknowledged problem around the world. Records and data are fragmented across disconnected systems, which can have real and disastrous repercussions for patients.
One of the most poignant illustrations of this global issue occurred in the UK in 2015, when thirteen-year-old Tamara Mills, a chronic asthmatic, died from an asthma attack after being seen 47 times by various medical professionals across different departments of the NHS. Without a universally-accessible single patient record, she was recorded as a new patient on each visit. Following a review of her death, it was concluded that if her health records were linked appropriately, doctors could have recommended a different care path and perhaps could have prevented her death.
In 2019, through a collaboration with Greater Manchester Health and Social Care Partnership, Janeiro Digital was able to test XFORM and the PODS ecosystem within the UK’s National Health System (NHS). XFORM bridged between a patient’s own POD and their NHS digital record. The seamless integration meant that the POD could then be populated with information from their NHS record and vice versa in a bi-directional exchange, all explicitly consented by the patient, whilst utilizing existing NHS systems.
A Democratised PODS Economy
The NHS programme clearly evidenced the potential for new product and service ecosystems to grow around PODS. For example, a health or fitness app could ask for access to health data held in a user’s pod in return for a new service. The NHS will unquestionably benefit too – imagine if, with permission, a doctor could review fitness data held in someone’s POD to monitor exercise habits prior to or post surgery? With consented access to the most up-to-date and accurate data, the possibility for faster diagnosis, as well as quicker and more effective treatment and management is astounding.
As well as storing real-world data, information stored within a POD could provide a ‘cradle-to-grave’ health record at their fingertips. This also means that any data collected, could stay with a person for life, whether they switch their fitness tracker from Fitbit to an Apple Watch or even move location to another country; everything is there and nothing is lost.
The best part is, health is only the beginning. PODS have the potential to proliferate and benefit our lives in almost every aspect. As well as integrating into other industries such as finance or retail, entirely new services can be created using the expanded pool of data available in PODS, if access is consented.
PODS may also be a good tool for competition and innovation too. Currently, the biggest and most valuable pools of personal data are centralised and controlled by big tech companies, giving them enormous leverage in creating their products – as well as hoarding the raw data for innovation. A POD economy could democratise the access to data, which means that smaller businesses would be able to benefit too, giving entrepreneurs much better odds of success.
A Decentralized Future
Janeiro Digital is working with a swathe of influential organisations and institutions, including those who also see immediate impact and benefit to the application of decentralization to their work across both government and commercial sectors.
For many, the opportunity to provide more efficient, secure, and seamless services to their constituents, customers and users – without costly investment in new digital infrastructure – is too compelling to ignore.
The shift is happening – right now the potential of PODS is being realised through XFORM. Hope for a future of interoperable, ethical data-sharing is becoming a reality.
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