Patients Should Control Their Data

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And other ways the decentralized web will innovate the healthcare business

By Jonathan Bingham

There’s a movement afoot that promises opportunity and innovation — and yet many in the US healthcare industry are unaware or unprepared. The decentralized web – a vision and technology conceived by the inventor of the world wide web Sir Tim Berners-Lee – has the potential to reshape our industry leading to improved patient care, accelerated medical discoveries, revenue-driving innovations and operational efficiencies. It almost sounds too good to be true — but a quick look across the pond shows us that the UK’s National Health Service is already one-step ahead of us. With calls for universal health care getting louder in the US, the decentralized web may even offer a pathway. It is already being explored by some of the most visionary companies in healthcare and pharma. 

I’ve been fortunate to play a role in the evolution of Berners-Lee’s technology Solid from its academic origins to commercial reality. Of all the transformational technology shifts I’ve witnessed and worked on, this could be the most potent opportunity for healthcare and technology reinvention. In fact, I believe it could radically redefine the entire industry and especially, the relationship between citizens and public and private healthcare on a nation by nation level.

What is the decentralized web?

When the web was invented in 1989 by Sir Tim Berners-Lee, it was intended as a place of collaboration, opportunity and empowerment—for everyone. Today’s web however is dominated by centralized big tech players who monopolize markets and drive profit from user data. Just look at Amazon’s aspirations for healthcare. By contrast, the decentralized movement restores balance on the web by giving patients unprecedented control over their data. 

How it works

Decentralized web technologies allow people to store data in a personal online data store (POD), permitting access only to the people, apps, devices or businesses they value and trust. The technology uses linked data, a set of best practices for publishing and connecting structured data on the web. This means you no longer “give” your data to apps and businesses; you permit them to view it.

This completely changes how applications are developed. Today, your data is walled inside an app and provides limited value. For example, your patients might use FitBit to track steps or One Drop to manage diabetes. Your healthcare practice probably has its own patient portal application and EHR systems, which have discrete functions.

By contrast, decentralized apps can access all and any data stored on any POD, anywhere in the globe – as long as permission is granted by the data owners. Imagine a world where you can create one holistic app that links to and combines multiple sources of health data and seamlessly integrates with EHR systems.

The benefits: 

  • If patients control their data, then providers don’t need to store and protect it. No doctor went to school to study HIPAA. Hospitals prefer to focus their time, resources and expertise on patient outcomes rather than privacy and compliance. The decentralized web means healthcare providers shed the burden and liability of data security and privacy and can instead focus on care. 
  • Patient empowerment. With full control of their health data, patients have more choice, empowering them to select only the providers that deliver the quality experiences they desire. This will create a new competitive landscape: if a patient chooses to change provider, they can revoke access to their POD. 
  • Accelerated clinical research: Today, discoveries are limited because data is either fragmented or inaccessible. But if hundreds of thousands of global patient pods were linked, access to disease data becomes on-demand and pooled. This decentralized intelligence will not only create new insights, but also generate new revenue streams. 
  • Business opportunities: what if you could access the data of complementary businesses in your ecosystem? Think retail pharmacy, insurance and so on. The decentralized web creates entirely new ways of doing business together and creating value.

The race is on

While the primary beneficiaries of the decentralized web will be patients, healthcare executives are already prototyping new business models and apps that will give them an inevitable competitive edge. For an industry drowning in data, integration and compliance challenges, this promises a tidal wave of relief and innovation. The time to dive in is now. 

Jonathan Bingham is CEO of Janeiro Digital, a business transformation and technology firm that helps enterprises dream bigger and transform faster. Janeiro is working to help commercialize the Solid decentralized web platform and bring its opportunity to the global healthcare market. Jonathan has spent over fifteen years as part of the technology ecosystem. He has won multiple awards for product innovation, spoken as an industry expert around the world, and been quoted in Health IT Outcomes, Forbes, New York Times, Wall Street Journal, Financial Times, and numerous other publications.  

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