Jayde Steckowych, MD, an otolaryngologist with Tri-County ENT in Mahwah, N.J., said it happens way too often: Patients come to her for a medical opinion, but they don’t have full information on the history of what ails them.
“Where’s your previous hearing test? Where’s that result?” she will ask. “Are you sure this is normal?”
The response she sometimes gets is, “They told me it was.”
She will occasionally have to ask the patient to go back to the center that performed the test, get the report, and then come back. “You hate to put them through it,” Dr. Steckowych said.
It’s situations like this that have Dr. Steckowych excited about the slow-but-sure rise of the personal health record (PHR).
Increasingly, physicians and patients alike are becoming more aware of the importance of ease of access to all of a patient’s health information. Much of this awareness is mandate driven, with federal meaningful use financial incentives propelling physicians to adopt technology in ways that will truly contribute to better patient care.
But there is a groundswell aspect, as well, born of a culture in which people now consider it standard to have information kept not only electronically but easily accessible via a few keystrokes, clicks of a mouse, or swipes and taps on a smartphone.
The PHR label is typically used to mean a person’s total body of health data, across all of their health practitioners and even including information that they themselves have assembled, whether with paper and pen or with apps that track everything from blood pressure to steps walked to calories eaten. In that sense, a PHR is different from an electronic health record (EHR), which is often just a reference to an individual patient’s electronic file kept at a specific clinic or hospital.
But the shape of today’s PHR is due in large part to the dawn of the EHR. If everything were still on paper, it might take a few briefcases and considerable muscle to cart around all of your health information.
To a large extent, the compilation of a complete PHR depends on the ability of EHRs to “talk” to each other, or at least for all of a patient’s EHRs to be accessible in one place. And, more and more, systems that will make this happen are being created.
Current Efforts to Promote PHRs
At the federal level, the Blue Button initiative gives patients access to their health records and insurance information online, as long as the entities from which they receive care are participating.
In New York State, a patient portal is being rolled out that gives patients access to their health records through the state’s nine regional health information organizations (RHIOs), which are entities meant to foster health information exchange.
This summer also marked the unveiling of HealthKit, the Apple platform intended to allow health apps to feed their information into one place for the user to view easily, including information ranging from physician records from participating centers to fitness information gathered by users through their smartphones.
Taken all together, all these PHRs, EHRs, portals, apps, and platforms can seem to be a bit of a blur. But everything is trending in that direction, said Lydia Washington, senior director of health information management practice excellence with the American Health Information Management Association (AHIMA). The PHR concept rose in prominence when records began to be kept electronically, and the concept ramped up much more in 2009 with the passage of the Affordable Care Act and its meaningful use incentives, she said.
AHIMA, a group with 71,000 health information professionals working to promote the adoption of electronic health records, includes a consumer support arm that promotes the idea of greater patient access to their records. “When [patients] have access to their own health information, they sometimes find errors in that information and have the ability to correct it,” Washington said. “That contributes to the integrity of their health information.”
AHIMA works with physicians to encourage them to promote the PHR concept to patients, mainly through state associations that have closer contact with individual practitioners, Washington said.
In New York, the state portal is a step in the right direction, but the EHRs of participating medical centers aren’t standardized, said David Jakubowicz, MD, director of otolaryngology at Medalliance Medical Health Services in the Bronx, N.Y., who helped create a patient portal at his previous institution, Bronx Lebanon Hospital Center. “One of the problems with all these EHRs is that there is no format that these EHRs are supposed to be…. There’s an HL7 interface, but there isn’t the portability that a patient may want,” he said, referring to Health Level 7 International, a set of standards for electronic health information.
Certain EHRs can communicate via HL7, but not everything can be captured, he said. “If a physician makes commentary … and it’s not in the standard profile, it can’t be pulled,” he said. “It’s the narrative portions that have difficulty being pulled into these standards.”
New York might be at the forefront with its state-run patient portal, but not even every major center in New York participates, creating a gap in access, he noted.
At Bronx Lebanon, patient use of the portal was limited, he said, in part because many patients thought it was “a way to collect money, and to divorce the money aspect from the healthcare aspect is difficult.”
So, he said, the idea of total access is very much still a work in progress. “I really do believe that transparency is the key with good practices,” he said, “and ultimately the more transparent we are as healthcare providers, the better it is for our patients and the more people’s interests potentially can be aligned.”
Steven Chaitoff, head developer at Hyrax Inc., which created the My Medical personal health record app for the iPhone and iPad, said that closed, proprietary systems specific to individual health systems are likely to open up in the years to come. “The Cleveland Clinic has a proprietary system. It lets people log in to a Web-based portal…. But you’re sort of locked in, right?” he said. “What I would love to see is where you can have My Medical automatically sync to the Cleveland Clinic, with other hospital systems, and everything sort of works together.” While he doesn’t see this happening in the near future, he said he sees a definite trend in this direction.
Dr. Steckowych, who has provided a Web-based patient portal for 14 years, is relieved to see more uptake, even though the healthcare industry has a long way to go in the quest for maximum patient control. “It’s a good thing because it’s starting,” she said.
Recently, she said, she described to a patient the possibility of using smartphone apps to log nutrition and fitness information, which would be monitored by their doctor remotely. But the patient was discouraged when Dr. Steckowych told him that, so far, no physician she is aware of actually does that yet.
“That was the sadness of it, because I could see that he’ll never do it himself and he really wanted to take part in something, which was to be responsible for his healthcare,” she said. “Not just have pills thrown at him to try to fix things and live it a little longer, but to actually get him into an exercise program and monitor him, because he needed monitoring and he can’t do it himself.”
Thomas Collins is a freelance medical writer based in Florida.
Disclosure: Dr. Steckowych is also chair of the American Academy of Otolaryngology-Head and Neck Surgery Medical Informatics Committee but was not representing the organization in her comments to ENTtoday.