Today, you have more access to information about your health than ever before. From the personal tracking offered by Fitbit and Apple Watch to the genetic testing that 23andMe allows from the privacy of your home, new services now make it possible to access and store rich medical information about yourself in real time. Yet the most basic and traditional of our medical information — the records generated by your doctors — remains trapped in a lockbox to which you have only very limited access.
On average, Americans visit 16 different doctors in their lifetime. While both the HITECH and the Affordable Care Acts now enable and in some cases mandate that data from your doctor’s visits be stored digitally, medical records and results from different facilities and physicians are often stored in incompatible databases.
This lack of interoperability costs 150,000 lives and $18.6 billion per year, according to the Premier Healthcare Alliance.
Despite the advances in consumer health technology so visibly on display at your local Best Buy, the ability to personally update your medical records with new information from your doctor, or with data from a device like a Fitbit, still escapes us. At the same time, your medical records are more insecure than ever, as evident from the increasing number of hacks and data ransom attacks against hospitals.
MIT Graduate student researchers Ariel Ekblaw, Asaf Azaria and Thiago Vieira, along with Senior Research Scientist Andrew Lippman, are developing a cryptocurrency-backed technology to address these issues. They are developing a system, called MedRec, for managing medical records that use the Ethereum blockchain.
MedRec restores patients’ control over their medical data. It does this by linking access to the patient’s medical records across the variety of their doctor’s databases. By functioning as an interface between institutions’ siloed health records it also has the potential to include personal sources of data like your Fitbit or 23andMe.
Importantly, MedRec allows patients to securely grant other doctors access to their personal information, as well as healthcare providers, researchers, and even the patient’s children and grandchildren.
In this way, it could, for example, help future generations more accurately answer questions about illnesses in the family, an increasingly important piece of data as precision medicine efforts scale up. By putting your health records into a blockchain-managed system, you and your doctor should not only be able to update and review your medical information in real time, but also know it has been held securely.
A novel design feature of MedRec is the way records are validated and added to the blockchain. The miners for MedRec are medical researchers who are rewarded with access to census-level data of the medical records. Similar to the census, the individual privacy of the person is protected, and the aggregate data is used for critical research. In essence, this is both a medical research blockchain, and a clinical one.
Federal legislation has helped dramatically speed up digitization of medical records as well as incentivize data sharing with new pay for value payment models.
In a new digital and payment era, consumers should have control and access to their own health information in a secure manner.
There are various efforts to unify a patient’s medical records across the country and MedRec is a novel way to help us achieve that. To learn more about MedRec, read the research team’s latest publication here from the MIT Media Lab.