After watching medical records get traded for billions of dollars, a tech entrepreneur says he can help you grab a share of the bounty.
Richie Etwaru has a message for you: You’re getting ripped off.
In a secretive business that’s little known outside the health care world, medical informatics companies like Optum and Iqvia and Symphony Health are vacuuming up your health data, stripping your name and a few other identifying details off of it, bundling it with millions of other people’s information, and selling it to pharmaceutical companies and other researchers.
The most private of your private bits — that oozy rash, the prescriptions for incontinence or ringworm, even those gut-wrenching records like a positive HIV test or cancer diagnosis — are bought and sold in a thriving marketplace that, in aggregate, is estimated in the billions of dollars. Even though the data emerged from your body, it doesn’t belong to you. That data originated in transactions you or your insurance company paid for, but you don’t see a cent of those sales.
It’s a moral outrage, Etwaru says. A former chief digital officer at Iqvia, he says what he learned there left him nauseated. In his view, we are all just digital serfs. As we get sick and take pills and see doctors and recover, we generate valuable information that is sold for someone else’s profit.
His startup, Hu-manity.co, which plans to launch its app at the end of this month, is his and cofounder Michael DePalma’s effort to replace what they call data feudalism with a more transparently capitalist relationship. Etwaru wants you and millions of others to use the app to claim your health care data as your property, using the much-hyped technology of blockchain, and enter that marketplace as a participant. Hu-manity.co’s app is a way to say: Go ahead, sell my data — but cut me in on the deal.
When Etwaru describes his vision, it’s like listening to three TED Talks at once: one about medical research, one about blockchain, and one about social justice. The tone is messianic, even by the standards of tech founders. Hu-manity.co’s launch campaign calls for data ownership to be enshrined as the 31st human right (adding to the 30 human rights adopted by the United Nations). The idea is that with our rights protected by property laws, we’ll be liberated from digital servitude. We will till the fertile soil of our bodies and lives and sell our informational harvest to the highest bidder.
“This seems like a really smart, really good idea,” says health data scientist Ernesto Ramirez, an early member of the quantified-self community who has long been involved in research with health and fitness data. “I would love it if that’s the way the world worked!”
The idea is that with our rights protected by property laws, we’ll be liberated from digital servitude.
However, he — like others who know the domain in which data, medicine, research, and money overlap — has doubts.
Will this system make research faster and better, as Etwaru says — or, by adding another layer of permissions, make it slower and more expensive? Is considering data to be property legal, ethical, or even possible? More to the point: Will you — or anyone else — actually want to use this app?
The market that Hu-manity.co is seeking to enter is already well established, if arcane. Health informatics companies — often the same ones that support the electronic medical records infrastructure that doctors and hospitals use to store your information — anonymize, merge and organize those records, which is no small task. Pharmaceutical companies, in turn, purchase them to use in marketing and research. Among other things, the companies are scanning for indications of real-world drug safety, figuring out how and where to plan an upcoming drug trial, or looking for previously undetected relationships between a pharmaceutical treatment and the way a disease plays out over time. The amount of money the industry spends overall on these records has been estimated in the billions, but details are scant. The main health informatics industry organization says such information is not available. Etwaru’s former company and other records brokers did not respond to requests for comment. Neither did three major pharmaceutical companies.
The problem with this data is that it’s often inaccurate. In one study, about 24 percent of electronic health records had at least one error. But privacy regulations prevent the pharma companies from re-identifying patients and tracking them down to correct mistakes and fill in the blanks.
Hu-manity.co says it has a way to address that. Its workaround is made possible by the main health care privacy rule in the United States, the Health Insurance Portability and Accountability Act (HIPAA), which gives people the right to opt out of medical record sharing. When you sign up with Hu-manity.co, you essentially threaten to opt out unless you get paid. You agree to waive your privacy rights, and that consent is stored on a blockchain. Hu-manity.co acts as your agent, in effect managing the title to your data for you and renegotiating the relationship between you and any pharmaceutical companies that want to use your information.
Basically, they’re now subscribing to your body. They can ask you what’s new or changed in your health, or what’s missing in your records.
With your consent on file, your records become, in theory, far more valuable to a pharma company, especially if you have a rare or chronic disease. The company has something that’s hard to get: an explicit relationship with you, and an open pipeline to get more of your information.
Once the app launches and gets fully operational in the fall, companies like Pfizer or Merck can pay about $120 a year to use your data with your explicit consent and confirm its accuracy, which they can’t do now. By default, they’d do this without directly knowing your name, using a key that connects to the blockchain to verify your consent. (If you so desire, you could also share your identity.) Basically, they’re now subscribing to your body. They can ask you what’s new or changed in your health, or what’s missing in your records. We see you took Ambien, they might ask. Did it work? In return, you get between 70 or 80 percent of the fee, and Hu-manity.co gets the rest.
Hu-manity.co is part of a wave of recently launched or about-to-launch companies with similar plans. All use blockchain, and some promise to compensate you with blockchain-based cryptocurrencies. There’s Doc.ai, launched by Walter and Sam de Brouwer, founders of Scanadu, which stumbled in its attempt to sell a gizmo that would measure your vital signs. There’s Health Wizz, Bowhead, and Longenesis, as well as companies like Nebula Genomics and Luna DNA focused on helping you sell your DNA sequence. Some companies even charge you to take part: Embleema, founded by Etwaru’s former boss at Iqvia, launched a few weeks ago with an app for people to organize and store their own data. It’s $2 per month — but starting next year, you’ll be able to make money on data sales.
The startups all tout blockchain as their whiz-bang selling point. But it’s really the idea, more than the tech, that’s potentially revolutionary. In the current system, medical data are a common good, belonging to no one person. And your medical records — the manifestation of that data — aren’t even legally your own in 49 of the 50 states. Redefining data as property, and helping people sell it, is the radical move. No founder articulates that with as much righteous fervor as Etwaru. “This work is so big and important, I say: If I were hit by a bus tomorrow, please come into my office and take my laptop and continue the work,” he says. “It has to be done.”
New income streams
Depending on how they play out, these innovations might indeed promote transparency and equity, says attorney and bioethics scholar Bartha Maria Knoppers, director of the Centre of Genomics and Policy at McGill University. But if they inadvertently slow the pace of research and harm public health by making data even more difficult to share than it already is, they could also be destructive. “I love exciting new, humanistic projects,” says Knoppers. “I’m not sure the individualistic approach is the way to achieve those goals.”
The rub is that medical records are valuable only in large numbers. Data on a couple hundred or even a couple thousand regular people isn’t worth much. It’s hard to even give it away, says Mad Ball, executive director of Open Humans, a nonprofit that supports personal data access, data sharing, and citizen science. Hu-manity.co and its competitors will need to sign up a lot of people quickly to become an attractive resource and do anything more than create an insignificant little kiddie pool of data. Etwaru talks in terms of tens or hundreds of thousands of participants; as a point of comparison, it wasn’t until the DNA company 23andme had collected data on 800,000 customers that the company began doing large research deals with pharmaceutical partners. Iqvia, the industry behemoth that used to employ Etwaru, has records on 530 million people.
“I don’t think it’s really to empower individuals all that much. That seems like a play by someone who wants to be the new data intermediary … cloaking in this human-rights jargon.”Jorge Contreras, a professor of law at the University of Utah
In order to scale, Hu-manity.co and its competitors will need to capture the imagination (or greed, or outrage) of regular people. Otherwise, managing your health care data will become just one more damn thing on the to-do list, like updating your software or flossing. It could even backfire, by triggering an ick factor: One survey found that people preferred to give their data away for research rather than be paid for it. By selling your own data, Knoppers points out, you are getting close to selling yourself, which is prohibited by very appropriate and important laws against buying and selling human beings.
Hu-manity.co must also convince large numbers of people, most of whom know nothing about blockchain or the trade in medical data, that its motives are above-board — and not everyone will be easy to convince.
“I honestly am very skeptical about these sorts of proposals,” says Jorge Contreras, a professor of law at the University of Utah who has written extensively on health data and genetic information. “I don’t think it’s really to empower individuals all that much. That seems like a play by someone who wants to be the new data intermediary. It’s pretty brilliant, cloaking in this human-rights jargon.”
Contreras makes an analogy to class-action lawsuits: In the beginning, the idea was to help all the little people fight exploitation by big business. But the intermediaries — the lawyers — make the real money. Contreras suspects that companies like Hu-manity.co really are just trying to insert themselves into a high-margin supply chain.
Even so, Contreras is curious. He’ll be one of the first to download the app and check it out, he says: “I’m willing to be persuaded.”
Etwaru says skeptics like Contreras have it wrong: “We are facilitating a direct connection between the human and the data buyer, one which currently does not exist because hundreds of intermediaries stand in the way.” He also insists he’s not trying to get rich. He has enough money already, he says. “I’m doing this because I honestly believe we need the damn thing,” he says. “I contributed to building some of the stuff that got us into the mess we’re in.”
He seems to be sincere. Like a growing number of people in tech, he predicts that in the near future, machines and artificial intelligence will do most of our work for us, and many jobs will disappear. All those jobless people will still need money. Selling personal data could be an important source of income, he suggests.
It could sound like an as-yet-unwritten George Saunders short story: a nightmarish future in which an underclass of unemployable people peddle the information thrown off by their sickly, faltering bodies to pharmaceutical companies, which then use the data to develop drugs they probably cannot afford.
But Etwaru thinks this is a step toward a more enlightened future. Health records are merely the test case for Hu-manity.co: Afterward comes financial data, then the geolocation data that your cell phone and car collect on you. Eventually, the whole data universe. If anything about your activity has value, he says, it should be your birthright, yours to sell. “I don’t like to call this a revolution, because when you do, it sounds like somebody wins and loses,” he says. “But we’re empowering people to exercise individual rights, to shape the interpretation of laws as we engage with corporations.”
This story was updated on August 2 to correct the description of Scanadu’s history.