What Blockchain Could Mean for Your Health Data

Big data is the most important asset we have to solve problems today. This is especially useful in the health care industry for controlling epidemics, manage healthcare, medical supplies, etc.,

This has to be balanced with privacy and data security. Legislations like GDPR have focussed on the demand side namely the sale of private data in corporate applications without individuals' awareness. However, enough attention has not been paid to the supply side where the data originates, who creates it, who owns it, and who gets to capture it first?

The simple answer is every individual is the owner of data. It is part of the dataset of your digital identity - the virtual you that you have created by your data trail across the internet. The data may be about you but it is owned by someone else.

Its time we take our data as seriously as the companies do. We need to understand the real value in all aspects of life. Blockchain can help protect our data, use data proactively. Health care is one area that's being discussed here.

Why health data:

Imagine companies not paying for their raw materials, that's what it is like for internet companies. It's a sweet deal. It's also a dilemma for business leaders who want as much data as possible, yet truly value privacy and value individual freedom. Consider the tradeoffs

• We can't use our data to plan our life and long term health care These reside in different silos, in separate databases of healthcare providers, pharmacies, insurance companies, local, state, national agencies. We can't access our data but third parties can and that too without our knowledge.
• We don't get any share of the benefits of this usage but bear the risks and responsibility for the data if it is lost or abused. If the data is hacked then we have to deal with fraud alerts, emails, phishing scams. 
• We can't monetize or manage these data assets for ourselves or family. Those who do not access the internet do not have this problem but they will get cut-off from the mainstream and they cannot participate in the global economy.
• Our privacy is at risk all the time. Privacy is the foundation of freedom and sometimes during national emergencies, epidemics we may part with privacy for social good but once normalcy is restored there is no way to get back the data shared.
• We cannot contribute to proposed health policies and we can't negotiate for lower medical costs but every other party in the system can negotiate with the government, industry bodies for favorable regulations 

With wearable devices and IoT becoming more common, we are increasingly capturing data on our status of health and this is being used by the service provider.

By owning the personal and medical data we can solve five problems - access, privacy, security, monetization, and accuracy. The key is to make use of the existing technologies to manage our data on our terms.

How patient control over the data can expedite data for treatments:

Pioneers like Canada University Health Network(UHN) has come up with a win-win solution using blockchain technology, that operates as a shred ledger across devices. The advantage of blockchain is that it is decentralized and it is immutable. 

In 2018, UHN launched this program to secure and consolidate patient data across the network and get patient consent before any data is shared with researchers. When the patient agrees, the program automatically encrypts and records details of the consent on the shared ledger. It also records which parties accessed the data, when and for what purpose.

This kind of functionality can be expanded to uses such as contact sharing. 

In the case of epidemics, for example, it can identify new cases rapidly and verify those who have immunity. If this can be applied on a global scale we could capture a single comprehensive account of global incidence rates and outcomes, all without sharing personal information.

Transitioning to this self-sovereign future

To realize this, each of us needs a self-sovereign and inalienable digital identity that is neither bestowed nor revocable by any central administrator and is enforceable in any context anywhere in the world. Now the technological groundwork is ready and organizations are looking at how to deploy it in public infrastructure.

Imagine having a digital identity that you stored in a digital wallet on a bock chain. It collects and protects all your biological, financial, and geospatial data and you decide how it is to be used. 

What it requires is a wholesale shift in how we define and assign ownership of data and how we establish, manage, and protect our identities in the digital world.

What Blockchain Could Mean for Your Health Data

by Don Tapscott and Alex Tapscott HBR June 12, 2020