In 2012, Leonard Kish, a health IT strategist, made a bold proclamation about a new “blockbuster drug of the century.”  The drug Kish was referring to can’t be found in stores or in a scientific laboratory. Instead, he said, it was something conceptual, adding that if healthcare organizations of all kinds made use of that “drug,” the results would be astounding.

Kish was talking about patient engagement; and his thoughts echo a rising sentiment among healthcare organizations as well as the federal government. While patient engagement is certainly not a novel idea, thanks to the Office of the National Coordinator for Health IT’s (ONC) Blue Button initiative, it’s been recently thrust into the limelight.

ONC, other government agencies, and other healthcare stakeholders have used the Blue Button capability to promote the idea of giving patients easy access to their health information. They’re coupling this push with various data liberation initiatives, which would allow for patient data to be used by developers to create consumer-friendly applications. All told, leaders at the ONC’s Office of Consumer eHealth say they want to make it “easy and intuitive” for people to get access to their information.

“There are numerous challenges in healthcare,” says Lygeia Ricciardi, director of the Office of Consumer eHealth. “The value of focusing on patient access is that you really want to engage the most under-utilized resource in the whole environment, which is the patient. Patients are invested, or should be, in getting good quality care, being healthy, saving money, all these things. Without access to information, they can’t be engaged partners in their healthcare.”

Lygeia Ricciardi

EVOLUTION OF A BUTTON

According to Dave DeBronkart, a former TED speaker and a well-known patient engagement activist, the Blue Button idea was birthed in 2009 at a Markle Foundation meeting. The U.S. Department of Veteran Affairs (VA) adopted it a year later. Under the VA’s program, more than one million patients have accessed their record through Blue Button. According to ONC presidential innovation fellow Ryan Panchadsaram, that success is a “credit to how simple it [the Blue Button] is.”

One patient who has used a Blue Button solution, an app called iBlueButton*from San Diego-based Humetrix, is Randy Watson, a veteran of the conflicts in Vietnam and Korea who lives in Joplin, Mo.  Watson has congestive heart failure, has had multiple heart attacks and deals with several other issues with his health. With a lengthy medical history, he’s seen both VA and civilian doctors over the years, and says it had been both difficult and expensive to get access to his medical record—that is, until the Blue Button program came around.

*The iBlueButton is one of the up-and-coming Blue Button type apps that attempts to make sense of the complex, text-based file that Blue Button records come in and put the information in an understandable format.

Watson says that through Blue Button, he is able to take control of his health information. He can view his lab history, x-rays, ultrasounds, doctor visits, prescriptions, and much more. It includes his information from multiple different care avenues including his VA and civilian doctors, as well as his Medicare. There is also a way for him to enter healthcare information within the record itself.

“The Blue Button is only as good as the person using it themselves,” says Watson, who believes the Blue Button has saved him from unnecessary testing and overbilling.

Many are hopeful that the concept will stretch beyond the VA. Along with the ONC itself, organizations such as The Advisory Board Company, a Washington, D.C.-based research, technology, and consulting firm, have used the Blue Button concept to run developer challenges. The idea behind these challenges is to encourage software developers to use data to create patient-friendly apps.

“The Blue Button, all of a sudden, is promising to do what we’ve possibly talked about for years. That’s getting patients, families, and patient advocates in the center of driving healthcare,” says David Chao, Ph.D., chief technology officer of The Advisory Board Company.

Dave DeBronkart

MORE TO COME

It’s not just Blue Button. Like many other elements of healthcare, having patients easily access their data electronically is also being pushed by way of regulatory measures. In Stage 2 of meaningful use of EHRs under the American Recovery and Reinvestment Act/ Health Information Technology for Economic and Clinical Health (ARRA/HITECH) Act, eligible providers must have five percent of their patients view, transmit, and download their record electronically.

In Stage 3, even more requirements are being proposed in this regard. For example, the government’s Health IT Policy Committee has suggested that providers be required to accept patient-generated health information. Not only would providers be required to give patients easy access to their health record, but they’d have to accept their input as well.

While many providers have begun to do this already, this movement is not without its challenges. As DeBronkart says, “A lot of people are enthusiastic about the idea of patient portals, but at the same time, we have the reality that on the back-end, the user interface pretty much stinks. We have a lot of getting over the hump that needs to happen.”

Numerous studies, such as a recent one from researchers at the University of Oregon that found patients who were less active in participating in their healthcare were paying eight- to 21 percent-higher in costs compared to patients with the highest level of activation, seemingly confirm the benefits and significance of this movement. Studies from the VA and the Oakland-based integrated care provider, Kaiser Permanente, have shown there are also clinical benefits to engaging patients.

Quite simply, many people believe the stakes are too high to allow this patient access movement to pass by. That’s why people like DeBronkart say that in the coming year, “It’s important for people to keep their eye on the prize” and continue the development of easy information access for patients.