The Office of the National Coordinator for Health Information Technology (ONC) is working to promote more patient engagement and access with their own records. One avenue of this work is with the Meaningful Use Stage 2 guidelines, but the office is also working with data holders and app developers to encourage the development of a patient health data ecosystem through an update and an expansion of the Blue Button program that’s being called Blue Button Plus, the ONC announced in a recent webinar, hosted by the National eHealth Collaborative.
“There’s a lot of democratization of information. Back and forth and sharing and co-creation of knowledge, and some of that has to be spilling over into health,” Lygeia Ricciardi, acting director of the Office of Consumer eHealth, said. “ONC in this context views itself not as the leader of this movement, but as a catalyst, pulling together the various forces moving in this direction in synergistic ways.”
HIPAA already requires that consumers have access to their own records if they request them, but under Meaningful Use Stage 1, they might only be able to access them through an online viewing portal. Stage 2, which will roll out for the earliest EHR adopters at the start of 2013, has a stricter requirement that patients be able to view, download, and transmit their data.
This paves the way, Ricciardi said, for the implementation of Blue Button Plus, which could possibly be a requirement in Stage 3 (the Stage 3 guidelines, which will go into effect in 2016 at the earliest, are not yet set.) Named after the original blue button that was implemented on the VA website starting in 2010, ONC uses the term “Blue Button” to refer to the act of patients downloading their own health records, something that should only become more feasible as providers switch over to EHRs. The ONC advocates that patients have access to their health records to make it easier to keep track of medications, to switch doctors or insurers, or to get care when they’re away from home. Also, when patients have access to their own records, they can spot errors and call to have them corrected.
Data holders that are themselves part of the government — like Medicare and Medicaid, Veterans Affairs, and the military — are implementing Blue Button Plus directly. But the ONC wants to encourage private data holders, such as hospitals, doctors, and private insurers, to make their data available in the same way. Toward that end, it has launched Blue Button Pledge, a partnership which has signed on 450 partners that are either data holders or organizations with a lot of public influence to get the word out about the initiative.
Blue Button Plus, which has previously been referred to as the Automate Blue Button Initiative, will not only make a patient’s health data accessible, it will make it accessible in a mobile and flexible way. Through Blue Button Pledge, the ONC will encourage data holders to format patient data in a consistent way. Whereas right now Blue Button data can only be accessed as an unformatted ASCII text block, Blue Button Plus will be in a data format that third party apps can shape into easy-to-use graphical interfaces, according to ONC. In addition, Blue Button Plus will be designed so consumers can give a third-party app access to their medical records and have it be continually updated, without their needing to sign in every time or manually download their records over and over.
To demonstrate some ways in which Blue Button Plus could be helpful, the ONC launched a Blue Button Mashup Challenge on Challenge.gov, asking app developers to integrate patient health records with some other source of information. Some of the winning apps allowed users to view their medication history on a timeline alongside doctor visits and conditions, or to see all of their medications with a list of side effects and counter-indications. ONC also launched a design challenge to make the Blue Button readout look, in Presidential Innovation Fellow Ryan Panchadsaram’s words “less like a cash register receipt.”
Although support has been wide-ranging, the participants in the ONC webinar acknowledged that it would take effort to change patient and provider attitudes sufficiently to make patient engagement the norm.
“We recognize there may be barriers,” said ONC policy analyst Erin Poetter. “Patients may worry about being viewed as a difficult patient. Doctors might not be accustomed to patients asking a lot of questions or to having their authority challenged. It’s really going to require a shift for both parties.”
But Dr. Henry Wei, a Presidential Innovation Fellow, said it will ultimately be up to patients to demand the rights to their own information.
“You have to ask your data holder to ‘Give us our Blue Button!'” he said. “It’s not evil, it’s just inertia. Get out there. Make yourself known.”
The participants acknowledged that large personal health record movements, like Google Health, had failed in the recent past. But HHS Innovator in Residence Pierce Graham-Jones said what Blue Button Plus is trying to put into place is exactly what was missing in 2011: ubiquitous patient access to digitized records.
“The past was a very manual world of entry, the future is going to be a world of automation,” he said.
Graham-Jones said a number of data holders are already designing Blue Button Plus features, and that some would be on display at the HIMSS conference in March.