Blockchain is in vogue this year in the healthcare space as innovators find new uses for the technology, which makes information easy to verify and difficult to falsify.
Emerging out of stealth mode today is New York-based startup Embleema, which is launching its block chain personal health record platform designed to help link patients to life science researchers.
“We focus on real data from real patients in the real world, something the health system has struggled with,” Robert Chu, CEO and founder of Embleema, said in a statement. “Our mission is to turn the bottle upside down and put patients first, restoring their sovereignty over their data. Blockchain removes the need for third parties to broker the sharing of data, while providing the most accurate data possible for precision medicine. This is the best way to guarantee that individual patient data will be used to their benefit.”
The HIPAA-compliant technology was in part developed to help tackle the issues of missing data in research. Patients can keep track of their health data through Embleema’s health blockchain and decentralized app. Clinicians can upload "Continuity of Care Documents" into the blockchain through HL7 and FHIR. Patients also have the ability to sync the platform to their Fitbit devices.
The technology lets patients share their data with stakeholders, such as clinical researchers, and cryptocurrency for being part of a study. Embleema noted that one of the hurdles to getting accurate data is the lack of patient involvement.
The app costs $2 a month for a subscription fee but users get compensated for various activities, according to the webpage.
"With a decentralized public ledger, patients can truly be the stewards of their own data,” Dr. John D. Halamka, International Healthcare Innovation Professor at Harvard Medical School, chief information officer at Beth Israel Deaconess Medical Center, and Embleema advisory board member, said in a statement. “Blockchain infrastructure provides three benefits — a ledger of where a patient's records are to be found, smart contracts to determine who can access those records, and security keys to ensure only authorized parties access the data under the patient's terms. It is not here to replace EMRs, but rather to create more balance within the system by giving patients control over their treatment and how their data is used.”
This isn’t the first company to let patients exchange personal data for cryptocurrency.
In fact, health aggregation platform HealthWizz is now providing channels for users to sell their health records to researchers and pharma companies — arguing that even if the consumer doesn’t sell their data a third party may — and probably already has.
The HealthWizz app has the ability to aggregate data from multiple different sources including electronic health records, lab results, genetic data, and wearable data.
Some companies are using cryptocurrency and blockchain to propose an even more unconventional data exchange. For example, Nebula Genomics, which was cofounded by Harvard geneticist George Church, plans to sequence participants’ genomes and then give users the agency to sell their personal data to researchers and pharmaceutical companies via a cryptocurrency.