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How blockchain could monetize genomic, mobile health, and lab data.
This year, close to 2 million patients have been affected by data breaches in at least 18 different hacks. And that’s without tallying the countless records affected by breaches that haven’t been quantified, like the ransomware attack on Allscripts, the electronic health records (EHRs) vendor that serves 7.2 million patients and thousands of practitioners.
The breaches ranged from sophisticated ransomware attacks to phishing emails and stolen laptops, but they all pointed to a common problem: the troubling state of healthcare data in an era when every industry is driven by data.
There is great promise in an alternate future where healthcare data infrastructure is secure, private, and shareable among patients, practitioners, and researchers. And there is a crop of healthcare companies that are betting on that future, and they plan to use blockchain technology to build it.
Although they differ considerably, companies like Longenesis, Coral Health, and Nebula Genomics all hope to give patients control over their medical data—fitness tracking, lab results, or their genetic code—and even enable them to get paid for sharing that information.
These companies seek to solve the double problem of making healthcare data both accessible and secure. Currently, healthcare data is siloed, fragmented, and often sealed. Patients repeat procedures or must physically send results from one office to another, while practitioners diagnose and treat without complete medical histories. Across countries and states, information is locked, sometimes even within the same hospital, in departmental or software silos.
However, on the flip side, centralized data centers pose significant security and privacy issues, evidenced by the Allscripts breach.
As we move into a future of precision medicine, synthetic drug discovery, and an industry fueled by data, access to medical data and the shaping of its infrastructure will become even more crucial.
That’s why companies are turning to blockchain for the solution. Blockchain is best known for its most popular application, the digital currency bitcoin, but the underlying technology is not specific to currency. A blockchain is a decentralized database, and its fundamental advantage is that, unlike a company-based server farm, there is no single point of failure or control. A blockchain-based system is also by definition immutable, which makes it less vulnerable to certain kinds of fraud and corruption.
The budding startups in this space are at various stages of deployment, and they focus on different data types, including genetic data, EHRs, lab data, and even selfies—but all are hoping to shape the future of healthcare.
Blockchain technology is hailed as the solution to the impossible: creating a database that is secure, accessible, private, and transparent. Generally, those traits are incompatible, meaning we trade access for security and transparency for privacy.
But blockchain resets those trade-offs. It redistributes control to multiple actors so that there is no single point of failure and no single point of access.
The technology’s second primary advantage is that it can’t be changed. As the name suggests, a blockchain is a series of blocks of code, strung together like beads on a necklace. Each block of code is a transaction, and once it’s been added to the chain, it can’t be removed, which makes the blockchain uniquely transparent.
But the blockchain doesn’t solve many other tricky questions regarding privacy and security. The technology itself is not impenetrable, and, more important, it is not a closed system. Since any blockchain-based system will need to be connected to the real world, its security is highly dependent on the infrastructure built on top of it, such as accounts, storage, encryption, and identity validation.
Each of the startups Healthcare Analytics News™ reviewed have different solutions to connecting the real world with the blockchain and protecting the user data so that the information can’t be de-anonymized or removed from the closed system of the blockchain. But it’s also important to note that while the blockchain offers advantages over traditional database systems, it is not a magic bullet.
Several companies are already vying for control over the nascent genetic data industry. In 2015, researchers predicted that over the next decade, the amount of genomic data will outgrow that of YouTube. That tsunami of information is poised to fuel everything from precision medicine to artificial intelligence (AI)-generated pharmaceuticals, as well as yet-to-be discovered areas of medicine.
Nebula Genomics hopes its model will make for a smooth transition. The company—launched by Harvard graduates and endorsed by George Church, PhD, a co-founder of the Human Genome Project—aims to remove the two biggest obstacles that stop people from sequencing their DNA: cost and privacy concerns.
Nebula will offer whole genome sequencing DNA for $1,000 and exome sequencing for $300. Costs might decrease even more in time, says co-founder and CEO Kamal Obbad.
Concerns about who will own and control the incredibly sensitive DNA are another obstacle. Currently, companies like Ancestry and 23andMe own and profit off customers’ DNA. “People are already making money off your data on secondary markets,” says Obbad. With a company like 23andMe, “if you sign their terms and conditions, you’re effectively signing away your data to them to monetize as they see fit,” he adds.
Nebula plans to flip that model and put individuals in charge of their own DNA, allowing them to profit from it. Nebula’s blockchain-based platform will allow data to be securely stored and shared with researchers, universities, and pharmaceutical companies, which will pay for access. Patients will retain the rights, and industry will benefit, Obbad says.
“Researchers are spending a lot of money and pharma companies are spending a lot of money creating data sets that they could effectively be mining from existing biobanks,” he adds. “There are 300 million biosamples in the United States alone. Can we make those more discoverable? Can we create a liquid marketplace where you can identify these samples, potentially identify genomic samples that are paired with rich clinical data and use this to inform research decisions and clinical trial design and drug design?”
All transactions on the platform will occur in a digital currency specific to the platform. Users will be compensated in tokens for uploading or sharing their data with customers. The tokens can be held, traded for other digital coins on cryptocurrency exchanges or exchanged for fiat currency.
Similar companies include EncrypGen, Shivom, and Luna DNA. There are also companies that already pay for customer DNA, including DNAsimple and Genos, but don’t plan to build a blockchain-based platform.
As in every nascent space, the proliferation of companies, universities, and nonprofit groups attempting to build DNA databases could lead to fragmentation, which would undermine a crucial reason for their existence. But it’s the start of the race, and it will be some time before it’s clear which of these competitors pulls away from the pack.
An important decider will be how well the company or group can work with varying kinds of medical data. Genetic data are not useful to health providers or researchers without accompanying phenotypic data: information about traits and conditions. These data exist in surveys, blood tests, wearables, and self-reported tracking, which are messier. They are more difficult to verify and already subject to the vagaries of the existing healthcare infrastructure.
That’s one reason that Nebula joined forces with Longenesis, a company aiming to build a one-stop marketplace for all kinds of medical and personal data.
Longenesis is a Hong Kong-based joint venture between two companies in different industries: Insilico Medicine, an early player in AI for drug discovery, and Bitfury, a blockchain outfit. Longenesis aims to build a blockchain-based marketplace for medical data, giving users incentive to upload selfies, DNA, Fitbit data, and more.
While the marketplace forms the core of its model, Longenesis plans to add a layer of analysis on top of the data, with the AI expertise of Insilico and one of its partners, Neuromation. The analysis won’t be limited to specific diseases but to overall health and longevity.
The key, says Emil Syundyukov, Ph.D., a deputy director at Longenesis, is providing a framework in which many disparate types of data can be combined and correlated in ways that haven’t been done before. He and his colleagues hope to merge demographics, genetic data, lab work, and lifestyle tracking, providing new avenues for research.
Longenesis views aging, for instance, like a disease that, if understood, can be prevented or delayed. Something like a daily stream of selfies—which aren’t currently recognized as medical data per se—could provide indicators regarding skin quality, age predictors, and other crucial information to understanding the process of aging.
For the patients, Syundyukov says, the value lies in their ability to track their own risk levels for various diseases, as well as how their lifestyle affects those risks. For providers, the tech will provide an updated analysis of the patient’s medical history and risk factors, leading to better diagnoses and better care.
If the models of Longenesis and similar companies work, they will create a data economy with implications that will become more apparent with time. For one, there is the question of how to price the data. The genetic data of people with rare diseases will be very valuable to drug companies and researchers, for example, while some customers will be interested only in data from older patients, babies, or people of certain ethnicities or regions. The value of some data deteriorates with time, while others are valuable only within certain contexts.
And once there’s an opportunity to profit, there will be incentive to game the system. Which means that companies will have to provide a system of validation and verification that the data are accurate without compromising privacy.
On the other hand, there will be incentives for powerful companies to leverage these marketplaces for access to data. Already, some employers reward employees for participating in wellness programs, and there’s an uneasy culture between data tracking and the ways powerful forces can exploit it by restricting access or requiring participation in certain programs.
While the AI-powered future is soon to arrive, in the meantime doctors and patients still sometimes communicate via fax. And that’s where Coral Health comes into the picture.
Like Longenesis, Coral Health plans to build a blockchain-based marketplace for medical data, but the company is starting with data that already circulate throughout healthcare. And Coral has the insurance companies on its side.
The company launched in December and announced a pilot program with Principal Healthcare Systems, a Houston-based health service company. In the long run, Coral intends to include genetic testing, but it wanted to start with something that it could get off the ground in the near future, says Jeremy Mullin, MBA, an executive at Coral Health.
“We firmly believe this, that genomic testing is going to be the foundation of your health record,” he says. “There’s so much potential to unlock if it’s stored where medical professionals can access it.”
But Mullin adds that it’s a mistake to start with genetic data, which are relatively scarce and thus plagued by limited value. “We think it’s too ambitious to start there,” he says. “We don’t need to start there to start gaining operability. We can start with something as simple as a lab test.”
One benefit that the Coral Health platform plans to offer is instant authorization from insurance companies. The plan is to code smart contracts, which are digital instructions that activate when certain conditions are met, automating the process. If a person arrives at the doctor and is recommended certain tests or treatment, they can choose to share their profile with the insurance company, which will immediately detect whether they’re eligible under their policy and then provide or deny authorization.
Coral Health also plans to open the platform, not only to researchers and pharma companies but to doctors, who can offer their expertise to patients who match their specialties. The system would resemble Zocdoc but for immediate consults. And doctors would reach out to patients instead of the other way around.
Coral Health is just one of several companies with similar models. Others include Medicalchain, Health Wizz and the Massachusetts Institute of Technology-affiliated MedRec. But none has yet to emerge as the clear leader.
Whether the future of healthcare data lies with the blockchain is still up for debate.
But regardless of whether we need blockchain, these startups are forcing a necessary conversation about the best way for the healthcare industry to move forward in a way that fuels progress in medicine while also protecting the people whose literal blood, sweat and tears will be contributing to that future.
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