Idle Healthcare Data May Be Preventing Cures — How Blockchain Can Help
Nearly every sector of every industry has been reshaped by big data. Fundamentally, this shift has brought about an attitude that data is to be treated as a proprietary asset as most companies consider data points to be a competitive advantage. However, while this may be true for the private and public markets, holding data like cards at a poker table is having devastating consequences in health care.
Cures for rare diseases suffer inordinately from the non-dissemination of data. Creating technologies of data that allow multiple researchers to compare notes around data imperative. Take for instance childhood acute myeloid leukemia, which went from a 20% 5-year survival rate to having a 68% 5-year survival rate due to researchers pooling information together. According to Knox Carey, of Intertrust’s Genecloud, with more collaboration in the field of oncology, more cancers such as this one will be treatable within 10–15 years.
“A ship in harbor is safe, but that is not what ships are built for”
The purpose of data is not to remain within a comfort zone. Data must sometimes “sail” in order to be discoverable and useful. As of now, smart health care researchers have many hurdles in order to seek and find data points. Primarily, this is because patient information is sensitive. Since this information must be shared through many, many systems, there is a stark question of what rights patients have.
Three reasons data remains in a comfort zone:
According to Carey, there are three reasons health care data is not easily accessible:
Researchers sit on piles of data that they don’t want to share due to losing competitive advantage. Health care is a business full of opportunists — not altruists. There is not much that will change here which is why it’s imperative to resolve the remaining health care data silos.
A lot of times data sits because researchers are afraid they will violate HIPAA (the U.S. Health Insurance Portabilty and Accountabilty Act) — and soon the GDPR (the EU General Data Protection Regulation). When you export data from an institution, it’s out of your control, and this is often too risky for lawyers. These legal risks tend to prevent the movement of data.
In the event an institution wants to share data, there is no common way to do it. We need to think carefully about an ecosystem that will protect people’s rights in a distributed way.
If permissions are obtained and information can be disclosed, the next question is how much information. This is a big challenge that goes beyond the computation of data. The more questions you ask from a data set, the more that private information is leaked, and you can’t simply return the data once it’s been opened and accessed.
How Homomorphic Encryption and Blockchain Can Help
Homomorphic encryption is a crypto system that allows computations without the need to decrypt information. This method allows researchers to ask the database questions without the liability of handling sensitive patient information. Personal Health Information (PHI) has to be protected in three different phases: acquisition, storage and computation. The current Advanced Encryption Standards (AES) can secure PHI during the acquisition and storage phase, however, the computation stage is much more challenging. This is where homomorphic encryption can help by allowing computations on encrypted data.
While blockchain technology has gotten quite a bit of buzz in the financial sector, it can also create a trusted environment in healthcare. Blockchain has the ability to use time stamping to authenticate changes to a dataset, which is especially useful when more than one user has permission to edit a document, such as electronic health records (EHRs). With a blockchain-based system, patients can make changes, authorize new members, and govern sharing between various providers. This also helps providers to add new records.
Blockchain is becoming known as the “chain of trust” and it may help to eliminate unclear data ownership while improving the integrity of peer-to-peer accountability. Nowhere is this need more urgent than in the life or death scenario of disease prevention and cures.
To view more on this topic, watch this exclusive video with Health Data Expert Knox Carey.