CAMBRIDGE, Mass. -- At HealthCamp Boston, patients and patient advocates took over the health information discussion, reciting "e-Patient Dave" deBronkart's 3-year-old mantra: "Gimme my damn data."
Patients increasingly are demanding access to their health information, and federal initiatives also call for greater patient engagement. At HealthCamp, one of several so-called health IT "un-conferences" where attendees set the agenda after a structured introduction, deBronkart wasn't present in the flesh, but he contributed his own virtual keynote. It helped fuel the event's accompanying intense Twitter debate that was just as significant to the conference as the in-person dialogue.
With meaningful use stage 2 mandating that physicians push patient engagement, the Automated Blue Button Initiative (ABBI) became conference attendees' focus to help accomplish that goal. Originally, the Veteran's Administration hatched the Blue Button idea to empower veterans to quickly get their VA treatment data into the hands of civilian health care providers. This year, payers and providers on both the commercial and government sides of the health care fence are collaborating to create more complex health information exchange for both military and civilian patients through ABBI projects.
Blue Button gets a boost
GE Healthcare Standards Architect Keith Boone, one of the ABBI initiative's active members, said the Blue Button will evolve from a flat ASCII text download in its first iteration to more usable formats, including an XML version similar to what physicians exchange between electronic health record (EHR) systems.
"I am now a proud supporter of the Blue Button initiative because now I can get the same data the doctors are supposed to have," Boone said to the HealthCamp audience, after telling how he couldn't bring himself to endorse Blue Button when it represented only a downloadable ASCII file.
His ABBI co-member Adrian Gropper, MD, a Watertown, Mass., health IT consultant, believes that ABBI will ultimately be the way patients will view all health data from all their health care providers on a single webpage. While there is no federally mandated patient identifier, he believes that voluntarily assigned Direct Web addresses for patients will eventually work like an identifier -- which eventually will be the engine driving Automated Blue Button.
He envisions patients using Direct addresses -- part of the federal Direct Project to foster communication among providers -- to manage consents, aggregate health data from all the practitioners with whom they interact (specialists, primary care, pharmacies, dentists, labs, etc.), and view and share it themselves. While the Web address can aggregate the health data from many sources in the same way credit agencies can aggregate a person's financial history, Gropper said patients won't experience the "coercive" tactics of a private credit agency that acts as judge and jury of a person's financial history. Instead, patients will get to control who among their health care practitioners sees what data from other providers.
"That voluntary identifier already exists as part of meaningful use," Gropper told SearchHealthIT. He believes health data will, in the future, continue to reside on the various providers' servers, but access will be controllable by the patients once they identify and authenticate themselves. "The Direct Project has given both patients and doctors the ability to control their identity ... or anonymity, or pseudonymity."
Aetna's CarePass brings patient data to smartphones
Commercial payer Aetna was represented at HealthCamp by Martha Wofford, vice president and head of the CarePass Platform, which aims to provide patients -- whether or not they're Aetna customers -- with their health data and other information, such as nutrition and fitness data on smartphones. Through apps developed on the platform, Aetna hopes consumers will eventually be able to make appointments and find physicians with their smartphones. Tasks like that aren't available to many patients today, and for those who do have that capability, they aren't always simple and straightforward to do.
Borne from CEO Mark Bertolini's own frustrations with the inaccessibility of health data in his personal life after a serious accident as well as his son's health travails, the free CarePass apps "are more of a mission for us than anything else," Wofford said to the HealthCamp audience. While they might not be a profit center for Aetna, the company still is investing in the idea, having sponsored a $100,000 developer challenge earlier this summer seeking the best medication-reminder apps.
"We believe the system, fundamentally, must change," said Wofford, adding that Aetna customers will soon be able to access "personal health record-like" data through CarePass, and the next goal is making it available to non-customers. "We're focused on really simple solutions ... making it convenient, insuring it's connected, it has to be secure, and an open platform. ... We're welcoming [developers] to come join us."