In 2010, patient advocate and social media rock-star e-Patient Dave (Dave de Bronkart) walked over to me at a medical conference and handed me a small pin. It was blue and white with a downward pointing arrow. He smiled his mischievous Dave grin and said, “You are going to want one of these. Blue Button is a big deal.”
So for the last two years, I have worn this symbol on my jacket and painted it into many paintings. Some folks have asked me why I use this image, “Isn’t Blue Button just some idea from the Department of Veterans Affairs and the Markle Foundation?” I respond, “That is where it started.” At this point more than one million patients have used Blue Button to access their data. VA, CMS, the Department of Veterans Affairs and the Federal Employee Health Benefits Program all have adopted the initiative.
But, I explain that it is far more than a VA program. It is a new way of thinking.
To understand how cool Blue Button is from the patient perspective, we must look at HITECH and meaningful use. In the proposed rule for this legislation back in 2009, there was great focus on the transfer of information from clinician to clinician and facility to facility, with an end goal of a functioning health information exchange.
There was very little language about making data available to patients. In July 2010, Stage 1 of the meaningful use program was announced, and there were core measures that specified electronic copies should be made available to patients upon request.
Patients spent the next two years advocating for even greater access, and a provision was included in the final rule for Stage 2 of meaningful use that requires patient portal access to the electronic health record in 5% of cases. The majority of the rule still focuses on facility-to-facility transfer of data. And, boy, do we need timely transfer of electronic data from facility to facility, but the patient needs that data access too.
While meaningful use was being defined, another path towards data liberation was gaining steam.
In June, I was honored to attend a White House Conference meeting focusing on the next steps in Blue Button. In that meeting everything changed. Several private companies stepped forward, saying they would create a Blue Button download capacity in their electronic health record systems. So far, Iatric Systems, McKesson, Relay Health and the Department of Vermont Health Access’ Vermont Blueprint for Health all have agreed to implement Blue Button.
Patients in these systems would be able to download a file in ASCII format. That data would not be pretty, but the information would theirs without waiting 21 days or paying 73 cents per page. This is a huge improvement for thousands of Americans who need their data for better continuity of care or as needed documentation to process paperwork for disability.
Some folks may wonder why companies are implementing this data-sharing agreement. In the past, patient information was sold as a de-identified aggregate and was a valuable resource. In these changing times of data transparency and media sharing, patients want to work with companies that that both respect their privacy and allow for ease of information access. Those companies that do not recognize the patient as the ultimate end-user will be left behind in this new open access frontier.
But what makes this version of Blue Button radical is the potential for third-party applications. We are in an amazing time of open data. Each year, our government opens more and more data sets to allow brilliant minds to hack new answers. Those same minds who are crunching data into large aggregates can apply that knowledge of big data to an individual.
New businesses that in the past would have focused on data in the sphere of commerce and banking are entering the world of health, eager to provide solutions for better health outcomes using this new data liquidity. Here is creative disruption at its best. Here the patient is truly the center — able to push and pull content.
This is the kind of access the e-patient movement has been fighting for these past four years.
So it is fall of 2012, and I proudly place my Blue Button lapel pin on my jacket, ready to face the world. Ready to explain to anyone I see the potential power in the little Blue Button. I know that the amazing staff of the Office of the National Coordinator for Health IT is doing its best to spread the word about this amazing tool. But, it’s also up to e-patients and providers to raise public awareness of this powerful new resource.
Regina Holliday is an artist, speaker and author in Washington DC. She writes about the benefits of HIT and timely data access for patients and families. This article was first published on iHealthbeat.org and is used here with permission.
Read More about Regina Holliday and her patient advocacy movement and visual work, “The Walking Gallery”, and her book “The Walking Wall: 73 Cents to the Walking Gallery.”