Patient access to their own health information continues to be a major challenge despite widespread adoption of electronic health records by healthcare providers and the availability of patient portals.

That’s the conclusion of lawmakers and witnesses who testified at a Sept. 16 hearing on patient access held by the Senate Health, Education, Labor, and Pensions Committee.

“Many patients are still filling out paper forms every time they visit the same doctor and collecting their information in piecemeal fashion from each individual doctor visit and trip to the hospital,” said Sen. Susan Collins (R-Maine), who chaired Wednesday’s hearing.

This “unnecessarily burdensome process” is even worse for patients with chronic conditions who see multiple providers on a regular basis and can have negative consequences for the care they receive, Collins commented. “An interoperable, patient-centered system could alleviate these frustrations.”

Citing the Office of the National Coordinator for Health IT’s Consumer Survey, Collins said that only 28 percent of Americans were offered access to online medical records in 2013, while 54 percent didn’t access their records, and 21 percent viewed them only once or twice.

At the same time, Collins observed that the “Meaningful Use provision that requires individual providers to have their own patient portals has led to fragmentation, patient frustration with having to access multiple portals, and a lack of incentives for investment in patient access capabilities that extend beyond a single provider.”

Raj Ratwani, scientific director of MedStar Health’s National Center for Human Factors in Healthcare, testified that the usability of EHRs, patient portals, and personal health records remains subpar.

“In most cases, patient portals and other health IT have not been designed to support patient needs and do not present information in a manner that is understandable and useful,” said Ratwani. “Consequently, these technologies are underutilized by the public.”

Also See: The Portal Outlook is Cloudy

To better serve patients, Collins argued that what’s needed are “systems and flows of information and data that allow better communication and that have better utility for clinicians and for their patients.”

“Patients want access to their own health data and they should have an easy way to do that,” asserted Sen. Elizabeth Warren (D-Mass.). “Making sure that patients have access to their own information is also the best way to engage patients in their own healthcare and to improve outcomes.”

However, Warren concluded: “We still have a way to go before we have the kind of interoperable, consumer-friendly system that will make sure that patients can actually see their own information and that will give access to that information to different doctors, hospitals, and healthcare providers.”

She noted that the HIPAA law gave patients a legal right to see their own medical records and to send them to other physicians, and further gave patients the right to an electronic copy of their information. Yet, according to Warren, despite an investment of $30 billion in EHR incentives by the federal government EHRs “still don’t talk to each other very well” and “too many patients who try to access their records or who try to transfer from one doctor to another can’t do so electronically.”

Eric Dishman, general manager for health and life sciences at Intel Corporation, told the committee that the industry will not achieve the triple aim of healthcare without “deep patient engagement” and full interoperability.

“We must think about interoperability in much broader terms than merely the doctor-to-doctor exchanges of EHR data,” testified Dishman. “We need to continue to support the concept of individual’s having personal health records available to them and their care team, anytime and anywhere, and not tied exclusively to a particular institution or company.”

Joel White, executive director of the Health IT Now Coalition, agrees that significant barriers to patient engagement and EHR interoperability must be addressed. “Excessive fees, delays, and difficultly accessing information stored in multiple locations are currently hindering patients’ access to their health information,” said White in a written statement. “As a result, patients have poorer health outcomes and increased costs. It is unacceptable that millions of dollars are spent every year on duplicate tests and procedures simply because neither the patient nor the provider has access to medical records.”

Warren argued that what is needed is “a standard format for recording and sending test results and other medical information,” as well as “a way to accurately identify which records belong to which patient” and “incentives to encourage doctors and EHR vendors to share information.”

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