I love the conveniences that come from having my data moved around online (with my permission, of course). For example, TurboTax will pull all my information from my investment bank and the IRS, and then calculate how much I owe. With me doing hardly anything, I’m done in about 20 minutes! Similarly, Mint.com can pull in my bank and credit card transactions to scold me about how much I’m over-spending on Amazon and restaurants.
Sadly, my healthcare data is not nearly as portable or accessible as my financial data. It’s a shame, because there are many talented people in health start-ups who want to build tools to help people make sense of their health data. It’s been 15 years since HIPAA was passed to promote this accessibility and portability of data, but many obstacles have gotten in the way of implementation: debates about data standards, the cost of updating information systems, debates about whether patients should really own their data and more.
This is exactly why the U.S. Department of Veterans Affairs (VA) should be commended. The VA cut through these obstacles and implemented data download for all the veterans using their “My HealtheVet” online health services portal. With the click of a single button, users can now download appointment information, medication histories, lab results and more. To date, nearly a half million veterans have already downloaded their data. What’s more, the VA is encouraging other health providers to follow their lead: they would love to see every health portal have a big, blue button that allows users to download their data with a single click. They are calling this the “Blue Button” initiative.
Blue Button is an ambitious undertaking, and we’re just beginning to understand its potential. However, Blue Button doesn’t necessarily make it easier for a patient to move data to other services. In fact, there are no data formatting standards for Blue Button, a decision meant to motivate providers to participate because they wouldn’t get bogged down in an argument about which standard is best (for example, Continuity of Care Document (CCD) vs. Continuity of Care Record (CCR).) This lack of standardized data output means it will be more work for any third-party services that want to import it.
Moreover, the VA’s implementation of Blue Button for My HealtheVet poses some additional challenges for data portability. The sample data export from My HealtheVet is just a free-text file with very little structure to it. While it is easily read by humans, it is not in a format that can easily be parsed by computer programs, such as XML or comma-separated-value (CSV) files.
To help facilitate the portability of the VA’s Blue Button download data, PatientsLikeMe is releasing an open-source Blue Button parser, which translates the free-text data file into structured data. Our goal is to make it easier for programmers to use this data for their own applications, or even for building tools to translate the data into a more established health data standard like CCD or CCR. Because the parser is open-source, it is not only free, but improvements made by any developers can be contributed back so that others may benefit. We believe sharing is a good thing.
There actually have been a couple prior attempts at parsing the My HealtheVet records to date. One person made a great start at an online tool for parsing My HealtheVet files. Also, Microsoft’s HealthVault service will read Blue Button VA files, but, as far as we can tell, the parser they use for this is not available as open source yet.
The lack of a defined data format “standard” for BlueButton frees us from endless debating over nuances of one standard versus another, but at the cost of data portability. PatientsLikeMe believes Blue Button can be even more powerful if patients have more options for what they can do with that data. By releasing a standard open-source parser, PatientsLikeMe hopes to give providers and other services a way to participate in Blue Button without worrying about the lack of definition.
What does this mean for patients? Hopefully we’re a little bit closer to all having a Mint.com for our health.