Could Being (a) Patient Actually Reward You? Blockchain Says Yes

Health records are personal and valuable data. Yet, in India, they are scattered all over the place — home cabinets, inboxes, diagnostic labs or hospitals. They don’t connect with one another at all.

For example, a blood test you took last week may not have any reference point to the same test you had taken two months ago at the same lab or hospital.

This haphazard system to store medical data is no doubt inconvenient for patients, but the problem does not end there. It also makes the work of researchers, health experts, and pharma companies a tad tedious.

Scattered health data means it’s that much harder to study diseases, discover better treatments, or spot early signs of outbreaks.

Meanwhile, valuable medical data either lies unused or gets sold surreptitiously to third parties, invariably without the consent of the patient.

Sharing Data, Willingly

Now let’s flip that model so patients have full control of their data and how it’s used. The only problem is that in the current medical ecosystem, it’s not possible because every hospital, lab, and clinic keeps its own records, and none of them talk to each other.

As a result, patients have no real control over who uses their data. But that can change if all medical entities decide to store data on blockchain.

RS Sharma, the first Director General of UIDAI and former CEO of the National Health Authority tasked with managing public health insurance, recently told The Core that blockchain will help store health records securely, track who’s accessing them, and most importantly, make sure patients are the ones deciding who gets to see them.

“If the patient has to be in control of that data, then it is important that the records are put on a blockchain so that the patient is able to share his or her own data with any service provider — the doctor, the pharmacy, or the diagnostic lab,” Sharma said.

Optionally, this data could also be anonymised and stripped of personal info before joining a big pool of health records, accessible to universities, pharma companies or government bodies for research purposes.

But this unlimited access need not be free. “Once you have it on the blockchain, patients could be incentivised to share their data with anyone who pays them or offers some benefit,” Sharma said.

The payback could be in any form — cash, cheaper health checks or even OPD discounts.

It’s Happening Already

This organised data-sharing method isn’t a pipe dream. Other countries have already been testing and implementing models like this.

In 2016, a software company Guardtime partnered with the Estonian government’s e-Health Foundation to accelerate blockchain-based management of patient healthcare records.

The country, which claims to be the first in the world to have embraced the system, says all updates and access granted to the healthcare records are registered in the blockchain, making it impossible for the government, doctors or anyone to cover up any changes to healthcare records.

In August 2017, Russia’s Ministry of Health partnered with state-owned bank Vnesheconombank for the development of a Blockchain technology-based system to be used to exchange patient history in the healthcare industry.

Similarly, in South Korea, companies like Macrogen have been using blockchain systems for genomic and clinical data sharing, while the Centiva Life app (in Ukraine and Vietnam) also uses blockchain to let patients earn tokens for sharing disease data.

Possibilities In India

The first few baby steps have been taken in that direction. In 2021, IIT Madras came up with BlockTrack, a blockchain platform, to store and share medical data.

The system allowed patients, hospitals and doctors to access medical files without any delay or gaps, resulting in better coordination and improved diagnosis.

But that’s just a pilot at best with no provision for a payoff to the patient. For a country like India, there is scope to do much more.

Blockchain could be the tech that keeps track of permissions, lets patients know when their medical records are being used, and ensures they get paid for it on time.

That’s a huge shift from today, where third parties might be using your data without your permission and depriving you of an opportunity to make some money.

Final Words

So this is how it would eventually work. Pharma companies, often seen as secretive, could gain trust by paying patients fairly for the data that powers their research.

At the same time, it could turn ordinary patients into partners in research without giving up control or privacy. And for businesses and scientists, it means cleaner, permission-based access to critical data.

Of course, it won’t be easy. Laws around who owns health data are still catching up. Not every doctor or hospital is ready to go digital. And people will need to know their rights.

But with the government backing digital health, and more health-tech startups popping up, the groundwork is already there. We just need to build on it.

This series is brought to you in partnership with Algorand.