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WASHINGTON, D.C. -- Getting patients engaged with their own healthcare is a central tenet of the national push toward electronic health records, but giving patients the ability to easily view and share their own medical records with providers is proving difficult.
Nevertheless, at the 2014 Consumer Health IT Summit, ONC spotlighted some successful and promising scenarios across the country. Chief among these pioneering "bright spots," as ONC calls such success stories, is at Children's Medical Center in Dallas, where doctors and clinicians in collaboration with ONC and Microsoft Corp. are working with families who have children with sickle cell anemia.
The families, some poor and living in rural areas far from Dallas, have full access to their medical records remotely on Verizon-donated iPhones using Microsoft HealthVault.
The hospital's program and what ONC's State HIE Program Policy Director Lee Stevens called the "data liberation" it has spawned, was showcased in an ONC-produced video to an audience of several hundred at the Consumer Health IT Summit in Washington, D.C.
"A lot of people thought you needed an Ivy League education to use this technology," Stevens said, moderating a panel on patient-mediated exchange of health data. "But this mother (shown in the video), can use HealthVault as well as anyone in the country. There are no barriers to electronic healthcare information in this country."
Mark Scrimshireco-founder and CTO, Medyear
The state of Kansas has been a pioneer in letting patients control their own medical records. Laura McCrary, executive director of Kansas Health Information Network, Inc., and one of the panelists, said five million patients in the state can see their own records through a health information exchange that includes 282 hospitals and other providers. The program is called MyKSHealth eRecords.
Another panelist, Mark Heaney, CEO and founding partner of Get Real Health, a Maryland-based developer of patient engagement and telemedicine technologies, cited several mobile health applications and other programs in addition to the Microsoft product that are worthy of consideration by providers. They include ONC's Blue Button initiative, Google's Fit and Apple Corp.'s HealthKit, among others, he said.
Panelist Gilbert Salinas uses a wheelchair after he was disabled and afflicted with chronic medical conditions at 17 when a friend accidentally shot him in the poor neighborhood in which he grew up. He is now a fellow at the Institute for Healthcare Improvement in Massachusetts. The California native said he has coordinated his medical care, with access to his own medical records, during his fellowship on the East Coast. "We redesigned my healthcare," he said.
Salinas urged the medical industry to focus more on patients. "The question should be not what's the matter with you, but what matters to you."
The fourth panelist, Tim Burdick, M.D., chief medical informatics officer at OCHIN, an Oregon- based nonprofit health information network that operates in 19 states, emphasized that buy-in from doctors and nurses is critical to successfully building patient access to records.
After the session, an audience member and advocate for patient-mediated exchange, Mark Scrimshire, co-founder and CTO of Medyear, a patient health information sharing company, said a lot of good work is going on in the field, but there's much more to be done.
"It goes to the heart of the healthcare industry. The patient has been the product whose information has been moved around without involving him," he said.
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