Patient health information: building access, encouraging action and changing attitudes
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Randy Watson is an elderly veteran with congestive heart failure and type 2 diabetes. He has suffered multiple heart attacks and undergone several surgeries over the past 20 years. Tracking down the 600-plus pages that compose his complete health records from multiple providers was costly and time consuming. Now, with the Blue Button, Watson can get it all for free in just a few minutes.
“It’s my right to have it,” he said during the Sept. 10 event held in Washington, D.C. “They’re my medical records and, with the Blue Button, I’ve got control of them.”
The Blue Button was initially implemented by the Department of Veterans Affairs for its beneficiaries and has since been adopted by other public and commercial health plans. More than one million patients currently have access to their health data with the tool, which is a personal health record (PHR) found on health plans’ websites. It is not a PHR that most providers or patients are used to, however.
“It moves us from PHRs tethered to particular providers to the concept of a personally controlled health record,” National Coordinator for Health IT Farzad Mostashari, MD, ScM, said.
Rather than passively viewing the record, Blue Button users are encouraged, at least by proponents of patient-centered care, to take ownership of their data. Patients can add information, point out errors in their records and share their health information however they like. The concept of individually-owned health information is expected to produce better outcomes in the patient-centered future of healthcare. “Patients are the most underused and potent resources in all of healthcare,” U.S. Chief Technology Officer Todd Park said.
Moving toward that future will require addressing the three “A”s of healthcare, according to Lygeia Ricciardi, EdM, the acting director of the Office of Consumer eHealth at the Office of the National Coordinator: access, action and attitude. Providers and healthcare policymakers need to ensure patients have access to their health information; patients need to take action to secure ownership of their health information; and all healthcare stakeholders need to change their attitude about health information’s role in patient care.
“There’s a wide perception out there that HIPAA is a barrier,” said Department of Health and Human Services Director of the Office for Civil Rights Leon Rodriguez, JD. “HIPAA is a valve, not a blockage. HIPAA is meant to regulate health information so that it is used to benefit the patient and for no other purpose.”
Enthusiasm and optimism for health IT-enabled patient-centered care was evident among the speakers and attendees at the Consumer Health IT Summit, but the reality is that few patients have access to their health information. Despite a Meaningful Use (MU) Stage 1 menu measure that calls on providers to give patients electronic access to their health information, only 66 percent of hospitals participating in MU actually did, according to Mostashari.
That should change. Having completed two years of the MU program, it is now evident that providers have the ability to electronically share information and Stage 2 will require it. “We want to grow the number from one million to ten million to the entire country,” Mostashari said. “That’s what we’re trying to accomplish.”