April 26, 2004 President George W. Bush gave a speech to the American Association of Community Colleges in which he said “…Within 10 years, every American must have a personal electronic medical record,” Bush said. “That’s a good goal for the country to achieve. The federal government has got to take the lead in order to make this happen by developing what’s called technical standards.”
The HITECH Act of 2009 was signed by President Obama in February 2009, and made available some $30 billion over time to hospitals and medical professionals who satisfied regulations for “meaningful use” of certified electronic health record technology. This year the industry is beginning implementation of Stage 2 Meaningful Use that slightly ups the adoption bar for patient access to their own records. It requires 10% of a provider’s patients to actually view online, download, and transfer their health information.
The adoption of EHRs by healthcare institutions, however, is not the same thing as having a personal health record. The generation of EHRs currently deployed were designed for the provider organizations, not the patients who must deal with many providers over the course of their lifetimes. To realize the vision elaborated 10 years ago requires a Patient-centered record – one that can go with you throughout your life, rather than having fragments of information locked up in dozens of systems within different provider enterprises.
To partially address this need a new specification has been evolving over the past few years known as “Blue Button”.
First implemented by the Department of Veteran Affairs, the tool has been used by millions of Veterans. In June 2013, Todd Park, the current U.S. Chief Technology Officer and former Silicon Valley entrepreneur, said that over 88 million Americans now have access to their data via Blue Button and over 1 million have used it. The first iteration of the Blue Button specification fell short of what is needed to spark the development of functionally useful personal health record applications. The next generation specification, known as Blue Button+, is intended to provide patients an easy way to directly transfer their data from provider systems into personal systems. It has a data structure that can be displayed more elegantly and also incorporated into new functionality. The data to be included is promising. The 2013 Blue Button+ Implementation Guide includes the following sections:
The disruptive potential of Blue Button+ can be seen in the diagram below:
This architecture has the patient (Ellen) initiating a transfer from 3 of her providers’ systems to an application she has authorized.
The reason this technology will be disruptive is that it empowers patients to get their own data from different provider systems and into their selected consumer apps. For example, this could allow startups and others to create smart phone apps that also combine personal fitness trackers, personal health diaries, photographs, you name it, so that the consumer, Ellen, has it all in her pocket. The patient who sees 3 doctors and visits 2 hospitals over 10 years (not uncommon in this age of changing jobs and health plans) can trigger the aggregation of their own medical records.
If widely implemented, this may eventually lead to the market disruption pattern documented in the works of Harvard’s Clayton Christensen. The now dominant health information technology vendors may have to look over their shoulders at the startups that begin to climb the value chain, delivering useful and low cost solutions to market segments previously underserved by the established players.
And yet… is it real? After the disastrous rollout of the Affordable Care Act’s crucial Health Insurance Exchanges we all have to pause and wonder if the federal government is capable of executing any complex information technology initiative. Last February, with great fanfare, the Blue Button+ Implementation Guide was announced, along with competitions for new Blue Button+ apps and a promise that a Blue Button Connector would be rolled out by the end of 2013. The Blue Button Connector will be a tool for consumers to find their health data to download and resources to make this possible. However, Mobihealth News reported that Lygeia Ricciardi, director of the ONC’s Office of Consumer eHealth , said at the Consumer Electronics Show in January 2014 that the Blue Button Connector rollout is delayed. She said that a beta may be available in late February 2014.
On the bright side, this is still primarily a technical specification. Unlike the Health Insurance Exchanges, the BB+ spec is not a big government IT project. Software to process apps that can use this data can be written by anyone with the coding skills. It remains to be seen whether the electronic health record vendors will make it work. This is why the data sources listed in the Blue Button Connector will be important to monitor.
As the enterprise electronic health record systems are opened up the data can be applied in new ways – under each patient’s control- to provide more tools for navigating their lives. These seeds of disruption offer consumers more informed choices, better tools, and over time can change the face of the healthcare industry.
The 10 year-old presidential vision of a personal health record for every American is getting closer. We should continue to expect resistance, both passive and active, from some industry stakeholders who want to use electronic health records as a “lock-in” strategy for customer retention. The role of federal leadership in developing technical standards, recognized by President Bush a decade ago, as implemented through the HITECH regulations, may yet create the seeds of new innovation in health consumer empowerment.
Ed Butler is a founder and lead organizer of the Seattle Health Innovation Forum. He is currently conducting market research related to the convergence of personalized medicine and population health management.