As Americans, we each have the legal right to access our health information held by doctors, hospitals and others that provide health care services for us, thanks to the HIPAA Privacy Rule. But 41 percent say they never have.  Why? In a paper-based health care system, it can be time consuming, expensive, and cumbersome to get copies of your medical records. And what do you do with a stack—or maybe even a room full—of paper health records?

Patient Access to Health Information Means Better Care

Things are changing. ONC is working to get health care providers online and using electronic health records (EHRs). And adoption rates of EHRs are soaring: Hospital adoption of EHR systems has more than doubled since 2009. As our health information becomes digital, getting access to it ourselves—as patients or caregivers—makes a lot more sense. For one thing, we can make sure all of the people who care for us have the information they need to get a complete picture of our health. (Or, for you health IT geeks out there, the patient can act as an “HIE of One”.)

In addition, we can use the health information ourselves to better communicate with providers and peers, better understand our health and treatment options, and make sure health information about us is as accurate and complete as possible. Research shows that engaged patients actually get better-quality health care, and can avoid potential medical errors.

Health Information and eHealth Tools

Last but not least, we can plug data from our electronic health records into a growing number of e-health tools and applications that help us better manage our own personal health and wellness, often outside of the context of traditional health care. Devices such as digital scales and wireless pedometers help us to track key health metrics; smartphone apps provide information, tools, and reminders; and online communities help us to interpret information, receive emotional support, and make choices that support our personal health goals. Eighty percent of Americans who have access to the information in their electronic health records use it, and a full two-thirds of those who don’t yet have electronic access say they want it .

On June 4, ONC joined forces with our federal partners at the White House and the U.S. Department of Veterans Affairs (VA) to host The Patient Access Summit. The purpose of the meeting was to identify and prioritize areas where technical standards and best practices are needed to turbo-charge progress in making patient access to health data a reality. There was a rich diversity of perspectives represented at the meeting—including those of several patients who shared their personal stories of the struggle to get timely information that in some cases meant the difference between life and death.

VA’s Blue Button

When it comes to the technical underpinnings of patient access to  health information stored in EHRs, the “Blue Button” has been a trailblazer. Blue Button is a technical capability that lets individuals download their health or claims information in an easy-to-read format. As of May, nearly a million Americans have clicked on the Blue Button and downloaded their personal health data through federal and private-sector sources.  Blue Button is becoming a recognizable brand for a concept that is new to many people: easy electronic access to your own health information.

So what can we do to make Blue Button even better? Here’s what we heard at the Patient Access Summit:

1. Enable automated downloads – Currently patients have to refresh their health information by pressing the Blue Button multiple times. Development of a “set it and forget it” or “Auto Blue Button” function would allow such updates to happen automatically based on patient preferences.
2. Address patient identity proofing and authentication – To help Blue Button to spread while protecting the privacy of patients, we need effective ways to ensure that individuals are who they claim to be.
3. Establish standards for claims and clinical data content for consumers – Many of the leading health insurance companies have agreed to use Blue Button, but work is needed to define the types of content that patients will receive from them in a standardized way.

Formal Workgroup Structures

ONC will be setting up formal workgroup structures to carry these initiatives forward in the near future. We’ll be asking for volunteers to join us—and the many who have already signed on—in this process. Stay tuned for updates, or send your email address to Erin Poetter, erin.poetter@hhs.gov, if you’d like to be included in the call for volunteers.

Several participants in the June 4 meeting have blogged about their experience. Here are their perspectives:

• Health Data Summit at the White House by Brian Ahier
• Mr. Obama, Tear Down This Wall(ed Garden) by Dave Chase
• Not So Secret Whitehouse Meetings with Patients by Keith Boone
• Health Reform Leaders Focus on Patient Access to Records as Key Barrier by Andy Oram

For More Information

To learn more about patient access to electronic health records and health information technology, visit HealthIT.gov.