Health data is fragmented; generated by and kept in separate inefficient systems. A blockchain startup is trying to solve this problem and — while at it — addresses the current issues of the DNA testing industry.
Concerns over privacy and giving others competitive advantage have prevented sharing healthcare data from one institution to another effectively. A consequence of this situation is that patient data doesn’t serve the patients as well as it could and healthcare isn’t as effective as it could.
The current electronic medical records (EMRs) use incompatible data standards, which further complicates real-time patient information exchange. A startup is trying to address this issue by developing a blockchain-based Health Information Exchange (HIE) system.
A blockchain-based health information exchange
The purpose of the system proposed by TimiHealth — according to the white paper — is to develop a solution that “will secure healthcare information.” The system will “effectively deliver patient records in a consistent and real-time manner, only to be accessed via a smart contract after patient authorization.”
This last feature of the platform may be one of the most important features of the system since it lets patients keep control and ownership over their data. Will Lowe, the founder of TimiHealth, has explicitly stated that the exciting thing about placing data on the blockchain “is that it changes the paradigm of data ownership and that’s the core of what drives us. We see the future as empowering consumers with the ownership of their data.”
He wasn’t talking about unspecified data in this particular instance. He was referring to genetic code. The DNA testing industry may be the best example of a faulty system that a blockchain-based HIE can solve.
The selling of genetic code in the DNA testing industry
The most popular DNA testing companies have been on the news lately because they have been selling user data for profit, arguably without the users even knowing about it. Joyce Lignell — the chairman of TimiHealth — said that “many believe they are sharing data to support nonprofit research because of overly complicated terms of service and unethical default opt-in policies.”
User data of such companies are being sold for millions for exposing intimate features of the clients, without even giving them a cut. DNA data can determine many things that most people may want to keep private, if not even secret.
There are genetic tests for mental diseases, intelligence, personality traits or even heart attack risk. All of this information is just a small part of what companies like 23andMe or Ancestry are revealing by selling DNA data.
The significance of this data is probably part of the reason why Lignell declared that “there should be regulations against the sale of any health information without the clear understanding and consent from the consumer.”
Blockchain is a solution to DNA data privacy and ownership
The TimiHealth platform, TimiDNA, will shortly start testing user DNA. By choosing TimiDNA testing, their DNA users will find themselves in a completely different situation when compared to the aforementioned competitors.
The TimiDNA platform secures the DNA data on a blockchain and tokenizes it to grant their users full ownership — and control — over their genetic code. TimiDNA is also a market where users can decide to opt-in and sell their data and profit from doing so.
The founder of TimiHealth said that they are willing to “bring the buyers of DNA data to each consumer who then decides on whether or not to sell the data.” The plan is to let users keep 70 percent of the profits made from selling their genetic data and only do it only when the user explicitly consents it.
According to Lignell, this is just the first step toward a major change in the industry: “I see a time where the consumer drives the price of data and the business model changes as a result.”