Imagine a world where you could sell your medical information to a drug company on your terms for a specific purpose like a drug trial. Then imagine you could restrict the company from using that data for anything else, including selling it to other medical data brokers, and enforcing those ownership rules on the blockchain.
That’s what Hu-manity.co, a data ownership startup wants to do and they are putting the pieces in place to create a data marketplace. This is not an easy problem to solve, but co-founder and CEO Richie Etwaru, sees it as a crucial cultural shift in how we treat data.
Etwaru, who wrote a book on using the blockchain and smart contracts in a business context called Blockchain Trust Companies, sees the blockchain as just a small piece of a much broader solution. It can provide a rules engine and enforcement mechanism, but he doesn’t see this as the gist of the company at all.
For Etwaru and Hu-manity it’s about viewing your data as your property, and giving you legal control of it. “We’re starting with the idea that your data is your digital property, and we are allowing you to have the equivalent of a title, like you have for your car,” he explained.
You may be wondering how they can bring this notion to business, which after all has been allowed to use your data for some time without your explicit permission, never mind pay you for it under a set of specific contractual terms. To achieve that, Hu-manity wants to create large pools of users that would make it attractive to the data buyers.
“We are pooling large communities together to be able to notify corporations that don’t respect digital data streams of property, because they take a very business centric view of regulations to opt out, then invite them back into a property centric view of data within the new terms and conditions defined by the marketplace,” he said.
They are starting with health data because Etwaru says that this data is often sold for medical studies, whether you know it or not — albeit with PII removed. The other thing besides market pressure, which could drive companies like big pharma to make contracts with individuals to buy their data, is that they get much better data when they understand the whole patient. Even if they could figure out who the patient is, and it’s becoming increasingly possible with digital fingerprinting, they are legally prohibited from contacting an individual to correct the record or to get a better understanding of their history.
Hu-manity plays a couple of roles here according to Etwaru, For starters, they are attaching a traceable title number to the data. Then they plan to set up the marketplace and help put the seller and buyer together, all the while providing a track and trace mechanism that allows the data owner to ensure their data is being used in a way they wish. In that sense, they are acting as a broker between buyer and seller.
Interestingly, Etwaru admits there is no set market value for this data, at least as of yet, although he believes an individual’s medical data sets could sell for between $200-$400. For now, the company is working with a group of economists to determine the best way to approach pricing. He doesn’t believe it’s a good idea for individuals to negotiate their own terms, and that we should let these market cooperatives determine the value. His company will take 25 percent of the selling price as a brokerage fee, regardless of how it ultimately works.
The company was founded last spring and has raised $5.5 million on a $50 million valuation. There are many issues to work out before that happens, and many ways for stumble along the way, but the company has a compelling vision and it will be interesting to see if it can pull this together and gain market traction.
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