Health IT Summit: Focus on the patient

The patient took center stage at the Consumer Health IT Summit, which brought together federal officials, healthcare organizations and industry representatives on Sept. 16 in Washington, D.C., to discuss efforts to equip and empower patients to better manage their health and how Blue Button fits into this work.

Following an upbeat talk by Dave deBronkart, better known as “e-Patient Dave”—who said patient access to data amounted to an “information revolution”—a series of short-duration talks and panel discussions explored various perspectives on patient engagement. In particular, the summit delved into synergistic efforts of government, industry and health organizations to propel the flow of data into patients’ hands.

“We always have to focus on the patient, that’s the catalyst for transformation,” said Patrick Conway, MD, MSc, chief medical officer for the Centers for Medicare & Medicaid Services (CMS), in his remarks. Efforts to include patients and families on all quality improvement teams and follow patients through the healthcare experience are vital to improving quality of care, he said.

Lygeia Ricciardi, director of the Office of the National Coordinator of Health IT's (ONC) Office of Consumer eHealth, shared the stage with Farzad Mostashari, MD, ScM, national coordinator for health IT, and discussed Blue Button, or downloadable health information that now is structured so third-party app developers can parse and integrate it into their innovations. These standards were developed by 68 organizations and led to the development of Blue Button guidelines, Ricciardi said.

Ricciardi said the healthcare organizations that have pledged to use Blue Button reach about 100 million Americans. She cited efforts by Pfizer, which is allowing patients to download clinical trials information, and Kaiser, which is rolling out Direct Protocol to bolster interoperability.

“This is one way government leads by example,” said Mostashari.

In a discussion on Blue Button implementation, Marina Martin, chief technology officer, Veterans Affairs Department, said that now that Blue Button data is machine readable it can be made actionable.

“We get to be in an innovative sandbox,” she said, noting abilities to now transfer records between the Department of Defense and VA systems and download the continuity of care document. She expected that, in the future, patients will be able to download x-rays.

Robert Tagalicod, director of CMS' Office of e-Health Standards & Services, said the requirements of information exchange in Meaningful Use Stage 2 incents use of Blue Button.

“We are looking at Blue Button and Blue Button+, and looking at ways of sharing information in ways that are truly useful to beneficiaries,” he said. “We are not only looking at Medicare beneficiaries, but rolling it out in the marketplace.”

In his short presentation, Leon Rodriguez, director of the Office for Civil Rights at the Department of Health & Human Services, stressed that the ability of patients to download their health data through Blue Button fulfills their basic right to control their health information.

“Your providers are required to give you your record in electronic form if that is how it is maintained,” he stressed. He noted that the single largest civil monetary penalty was not a security case, but a case involving an entity refusing to share records with patients. The payout was $4.3 million.

Rodriguez added that with the amended HIPAA law going into effect, the agency is working on updated models of the notice of privacy practices that more clearly define patients' rights.

As federal agencies continue their work to accelerate the Blue Button initiative, Peter Garrett, director of communications at ONC, said he is working on promotional activities to get the word out to the public. He said tools are available through ONC to help consumers access their data through Blue Button and understand the benefits.

“Why should we as patients and physicians have any less of an expectation of having access to the information that is ours?” he said.