4 posts tagged “health data sharing”

Behind Every Piece of Data Is a Patient

Posted February 17th, 2012 by

(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.)

PatientsLikeMe Co-Founder and President Ben Heywood

Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries.

According to the US Department of Health & Human Services’ Agency for Healthcare Research and Quality (AHRQ), a patient registry is “a database of confidential patient information that can be analyzed to understand and compare the outcomes and safety of health care.” Ultimately, the goal of capturing and analyzing this data (shared by multiple sources like hospitals, pharmacies, physicians and patients) is to learn from one another and improve healthcare. Like registries, PatientsLikeMe understands the importance of capturing data in a meaningful, computable and quantifiable way.

However, behind every piece of data is a patient.

So, in the spirit of putting patients first, we began thinking about the next generation of a patient registry where you benefit in real-time from what you share. It would need to be a situation where you could openly share longitudinal demographic and clinical data about your disease while using online tools to improve your outcomes. It couldn’t be just silos of health data focused on one disease at a time; it would need to encompass data on all diseases and inspire you to share information about those co-morbidities too.

If this next generation of a “registry” could ensure long-term data sharing, can you imagine how much meaningful insight would be available for patients and industry alike? We could…and that’s what we’ve been building at PatientsLikeMe for the last five years. We’re excited about what that means for patients like you each day, as well as what it means for the future of medicine.

We know you believe in community—we’ve seen it in your one-for-all mindset where you can share what you experience and see the same for every other patient like you; a mindset where you expect us to then pass on those experiences to researchers, companies and others who want to learn together and improve healthcare. When we tell you how we make money (by sharing your de-identified data with our trusted partners), many of you have said, “Great. Share! Share! Share!”

We have no doubt that sharing is the essential ingredient in accelerating research, ensuring patient safety and making better treatments. As we look beyond the chat room and beyond the traditional patient registry, we see a world where patients like you are openly sharing meaningful, computable and quantifiable data with each other to make your lives better…and, in turn, making all of medicine that much better too.

Can you see it too?  Tell us your thoughts on what the ideal patient registry should include.

PatientsLikeMe member bheywood


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


PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers

Posted April 13th, 2011 by

screen-shot-2011-04-13-at-123447-pmPatients Unveil Top Reasons Not to Share Health Information

CAMBRIDGE, MA–(Marketwire – April 13, 2011) – According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%) indicate that they have chosen not to share certain health information with an employer, while 14% have withheld information from insurance companies.

“Here’s a population of arguably the most open patients, who share detailed data about everything from their treatments to their sex lives on PatientsLikeMe, and yet some of these individuals feel uncomfortable sharing with other stakeholders in healthcare,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. ”If we’re all going to make healthcare better, then it’s time we really understand what’s keeping patients from sharing information. That insight is crucial to improving the system.”

In their poll responses, patients also identified some of the reasons why they chose not to share their health information. Patients’ unwillingness to share certain information with doctors is driven by more emotional triggers. Almost half (44%) say they didn’t tell a doctor about something related to their health because they “didn’t want to be lectured/made to feel bad;” second to that was fear of embarrassment (36%). What aren’t they sharing with doctors? Respondents said symptoms (41%), lifestyle information such as “diet, alcohol, exercise, or smoking” (39%) and failure to take a prescribed medication (29%).

Alternatively, the majority of patients who withheld information from an employer cite more practical implications. Sixty six percent (66%) of patients indicate the top reason as being “none of their employer’s business,” but nearly half (49%) say they are afraid of losing their job and about one-third (35%) are afraid of not getting a promotion. Finally, the individuals who kept certain health information under wraps from their health insurance companies report they did so out of fear of losing coverage (39%), fear of not having a specific treatment or procedure covered (39%) or fear of premiums going up (25%).

The complete PatientsLikeMe® Poll results can be downloaded here.

NOTE TO EDITOR: All poll results must be sourced as originating from PatientsLikeMe®.

Poll Methodology
Between March 22nd and March 29th, PatientsLikeMe invited all members who had been active on the website within the past 90 days to participate in the PatientsLikeMe® Poll; 4,364 members completed the survey. Mean age of respondents was 49 years (SD 12, range 13-84).

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

PatientsLikeMe member lscanlon PatientsLikeMe member dwilliams


PatientsLikeMe Update: May 2007

Posted May 15th, 2007 by

This month is momentous because we’re celebrating a major milestone at PatientsLikeMe. We now have over 1,000 PALS in our community. Thank you for making PatientsLikeMe your home and spreading the word to other PALS. The more patients we have, the more we learn from each other.

We are also thrilled to announce the debut of two new communities for Parkinson’s disease and multiple sclerosis (MS). If you know people with either condition, invite them to join PatientsLikeMe. We want them to know what you’ve already learned – that when patients share their data, it empowers everyone.