Get Real Health has been a champion of the Blue Button initiative as its mission mirrors ours in that it allows patients to securely access electronic health information. What gets us excited is the Blue Button initiative’s goal for patients to not only access health information online, but also to aggregate health data from multiple points of care into one place, regardless of the source or platform in which it is contained.
The theory behind Blue Button and Blue Button Plus are the very heart of patient engagement. The reality, however, has fallen far short of its goals.
Our client, Immune Deficiency Foundation (IDF), has experienced this first hand. When IDF, a PCORI awardee, and Get Real Health developed IDF ePHR for its community, Blue Button Plus was one of the key components to be included in the portal and at the time of development, a PCORI requirement. Many ePHR users visit multiple providers and multiple facilities in any given year.
Most likely, each of those providers utilizes a unique patient portal or electronic health record and many of them do not feature Blue Button Plus.
So why does this matter? Conceptually, Blue Button Plus enables patients to establish a trusted connection with their provider organizations via trust bundles and using a Direct secure e-mail address. Once this relationship is established, data automatically flows into the patient’s desired portal giving them a single point of access for all their health information.
“This is vital to patient communities like IDF that are actively engaged and often see multiple specialists and take multiple medications,” said Christina Caraballo, Senior Healthcare Strategist at Get Real Health. “To these individuals, it is beyond data. It’s about quality of life.”
Without Blue Button Plus, it can be very cumbersome for users to marry the information in those separate systems into IDF ePHR. Users must download the data first from their provider’s portal and then upload it into their IDF ePHR portal. Patients then become frustrated that they can’t automate data flow into IDF ePHR, or any other electronic platform, like Blue Button Plus promises. To make matters worse, even clinical documents that align with federal “interoperability” regulations uploaded to the portal are essentially useless, because the data is a jumbled mess and hard for patients and other technologies to decipher and read.
To combat this experience, and assist countless others, IDF has approached the Senate HELP Committee; urging them to define and enforce Interoperability Standards across the industry to ensure data is easily available and accessible to American citizens when and where they need it.
As it stands now, there is no widely adopted ecosystem promoting data consumer mediated data exchange. The technology is in place, however mass adoption by provider organizations needs to happen for patients to get seamless access to all of their health data.
We stand behind IDF and join them in their request to improve the Interoperability Standards so every citizen nationwide can get access to their health data when, where and how they want it.
To read the full letter IDF sent to the Senate HELP Committee click here.
