2 posts tagged “health data accessibility”

PatientsLikeMe at the White House: A new initiative to give patients more control of their health data

Posted 7 months ago by

Last month, PatientsLikeMe’s Sally Okun, VP of Policy & Ethics, was invited to the White House to attend a small executive discussion. The topic? Making the electronic health record (EHRs) experience more patient-centric and accessible, and the importance of “healthcare data interoperability” — the idea that different electronic health record systems should work together in an information network. Read on for Sally’s recap of the day and what came out of it: the MyHealthEData Initiative.

The topic for the meeting focused on electronic health records (EHRs) and interoperability, with specific attention to privacy and data protection. Joining me around the long wooden table in the suitably decorous room were eleven other invited “innovators” and our hosts: Seema Verma, who heads the Centers for Medicare and Medicaid Service (CMS), Don Rucker, the National Coordinator for Health Information Technology, and Chris Liddell, Senior Advisor to the President and Director of Strategic Initiatives.

The discussion started with our hosts giving their perspective on the need to ensure patients and their providers have access to needed health information. We then went around the table for introductions and we were given 2-3 minutes to offer comments on the topic.

“For the most part there was widespread agreement that patients need and want to have control of their health data and that there is a willingness to accept some risk to privacy for a meaningful health record accessible to them and their providers.”

Here’s a recap of my 2-3 minute megaphone moment in response to the questions we were asked to consider:

How important is interoperability to you and why?

All interoperability is good if the end goal is to enable access to data easily. As a patient/consumer I expect that all information/data about me and my health should be accessible to me and those I choose to share it with. To that end, it’s essential that data is where it needs to be when it is needed across all providers and settings of care — which includes me and my family caregivers as “providers” and my home as a “setting of care.”

What have been the main barriers and how might we overcome them?

Our current EHRs focus on billing and administrative functions. There is very little in the EHR functionality designed to drive care decisions and improve health outcomes for patients.

Vendors have not only created systems with little relevance to patient-centricity, they have actually “dumbed-down” the entire patient relationship with their health data in patient portals which, for the most part, offer little or no insight into one’s health.

Despite the fact that most of us spend the majority of our time outside of the clinical space the incentives to build EHR systems has focused on hospitals and physician offices. No incentives or money were allocated to create systems that could connect with other settings of care such as our homes, long-term care, mental health services and community-based service providers.

What approaches do you recommend to provide maximum benefit to the patient?

After almost a decade and billions of dollars spent on health information technology, neither providers nor patients have access to a longitudinal health record. We need space and resources for innovators to enter the marketplace to drive solutions. There’s no lack of technological expertise and creativity, but much of this is not inside the walls of our traditional health systems, and the current EHR vendors have no incentives to “rebuild” or “unbuild” their current systems to be patient-centric and patient-controlled.

The Centers for Medicare and Medicaid Service is in a position to realign and leverage their considerable resources to support creating new solutions that bring personal health data into the 21st century for improving health and wellbeing.

(Alas, I have no pictures other than the entry doors into the West Wing because all electronic devices were placed in lockers in the West Wing lobby.)

In the days following this meeting, the White House announced the launch of the MyHealthEData Initiative to enable a system in which patients have control of their data and can be assured it will follow them to each of their healthcare providers.

It is always a privilege for me to represent PatientsLikeMe and to ensure our members have a voice at many tables — including one at the White House. I am especially pleased to see that the MyHealtheData Initiative aligns with the patient first perspective I delivered on behalf of the PatientsLikeMe community in the Roosevelt Room of the White House just a few days before.

Want to learn more about raising the patient voice? Join PatientsLikeMe today to connect with more than 600,000 members living with health conditions!

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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