Barriers to accessing digital health information still exist, as Jennifer King knows all too well. Just last week, one of her family members had to delay a doctor’s appointment by one week because they needed to get records from three other doctors.
As co-founder of Share for Cures, a Virginia nonprofit working to encourage patients to share their health data for cancer and other medical research, King is just one of a number of medical professionals and organizations trying to surmount the existing challenges patients have in accessing their electronic health records.
Among the challenges facing organizations are digital health tools with limited interoperability and patient portals that are all too often underused, or not accessed at all, by patients. Whether patients are able to access their information easily, and whether they’re accessing it in the first place, are the matters that have tripped up healthcare organizations.
“We’ve tried to take away the technology barrier,” said King in a phone call. “It’s still not easy.”
Some data from the Office of the National Coordinator for Health Information Technology are encouraging. According to the ONC’s latest trends report, more Americans are being offered their health information digitally: From 2013 to 2014, the proportion of patients being offered access to their digital health data rose from 28 percent to 38 percent. In a congressional report last year, the ONC noted that from 2012 to 2015, the percentage of hospitals across the U.S. that provided patients the ability to electronically view their health information rose from 25 percent to 95 percent.
But as King noted, almost every hospital has its own implementation of its own electronic health record. Patients see many doctors, and the technology systems often don’t talk to one another, which makes it difficult for doctors to send records to another doctor.
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One organization working to defeat the interoperability challenge is the National Association for Trusted Exchange. Last summer the group added MediPortal to its network. A personal health record exchange system, MediPortal gives patients an aggregated look at their health and fitness data, which patients are then able to securely share with their physicians. So patients remain in charge of their data, but doctors are still able to view that information and make healthcare decisions.
King’s nonprofit has tried tackling the same technology barrier with a new technology platform, SHARE, or System for Health and Research Data Exchange. By creating an online account with Share for Cures, patients can pull in their health data from more than half the hospitals in the U.S. today, as well as from physicians’ offices and drug stores. The patients are then able to share that data either for medical research or with their other doctors, and are able to do so without running afoul of HIPAA.
“One of the ways around [HIPAA] is that patients are the true owners. With direct patient authorization … it’s not a HIPAA issue because it’s not the doctor sharing it with someone else. It’s the patient sharing it,” King said.
Patient portals were supposed to be the answer to giving patients an electronic look at their health histories. But patients portals tend to offer information as a PDF output, which isn’t overly user friendly, said Bettina Experton, founder and CEO of Humetrix, one of the organizations behind the national Blue Button Initiative to let Americans view and download personal health data.
Yet as that same ONC trends report shows, almost half of Americans don’t look at their electronic health data, even if they are offered it by their healthcare providers. The ramifications to healthcare costs are potentially huge.
“Putting in the hands of patients their list of medications because they can receive their records digitally can save us hundreds of millions of dollars. It’s a public health priority, but also an economic priority,” said Experton in a phone interview.
So what’s the answer? Experton pointed to some of the current work being done by Don Rucker, the ONC’s National Coordinator for Health IT, around the topic of direct exchange. Direct exchange refers to the use of 2014 certified EMRs to send health data to their patients’ application of choice via direct, secure messaging. Just last month in Washington, D.C., Rucker and the ONC played host to a Direct Exchange Workshop, a one-day event where different stakeholders talked about trying to implement direct exchange of patient health data.
It’s one way that the challenge of health IT interoperability could be circumvented. A patient could simply ask for their health information, and it would be transmitted to their secure application of choice.
“This is a reality that could work now,” Experton said. “And I think the ONC is really willing to promote it.”
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