2 posts tagged “VA”

Your data doing good: The POEM Study

Posted December 4th, 2015 by

When you share your health data, we all learn

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Here’s a great example: the POEM Study, which showed that the secret ingredient to managing your health may just be patients like you.

PatientsLikeMe was founded on a simple idea: when patients connect with each other and share their experiences, they can learn how to better manage and treat their disease and improve their outcomes. Over the years, members proved this is possible time and again. But would a rigorously-conducted scientific study confirm what we already thought to be true?

Our partner UCB wanted to work with us to find out. They helped to build and grow the epilepsy community on PatientsLikeMe back in 2010.  At the time, they were thinking about patient services that you might not expect a pharmaceutical company to focus on, things like information, advocacy, and education. In 2011, we worked together on a pilot study with people living with epilepsy. We learned that people who joined PatientsLikeMe felt that they better understood their own seizures. They even reported improved adherence to their medications. The results also underscored a significant piece of understanding about this particular population; prior to joining the site, one out of three epilepsy patients had never met another person living with this condition.

As the community grew, so did our understanding of what matters to these patients. Then in 2013, we found another partner who wanted to help create a new study focused on an even more specific group: veterans living with epilepsy, an often isolated and stigmatized part of the community. The question we were trying to answer was this: could a network like PatientsLikeMe, with its epilepsy-specific tools and resources, help those who found out about the site from their doctors improve their ability and confidence to manage their condition?

Along with UCB we collaborated with the VA Epilepsy Centers of Excellence in a six-week study of veterans using PatientsLikeMe. The evidence showed that by sharing their health data and connecting with each other online, these patients’ outcomes improved. The nearly 100 veterans who took part in the study grew more confident that they could take care of themselves, and did a better job of managing their care. The results were published this year in Neurology, a leading scientific journal in the field.

It all started with one partner, one community and a whole lot of data sharing. And now, five years later, there are nearly 10,000 epilepsy patients using PatientsLikeMe and helping one another to live better every day. You are the secret ingredient to helping others better manage their health. Thank goodness it’s not a secret anymore.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.


A New Way to Import “Blue Button” Patient Data from the VA

Posted January 23rd, 2012 by

Download the PatientsLikeMe Open Source BlueButton Parser

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.

The "Blue Button" Initiative Allows Veterans to Download Their Personal Health Data with One Click

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.

PatientsLikeMe member jcole