After writing about EMRs/EHRs and portals for many years, I’ve finally begun using an enterprise-class portal to guide my own care. Here’s some of my impressions as an “inside” (EMR researcher) and “outside” (not employed as a provider) user of this tool. My conclusion is that it’s pretty handy, though it’s still rather difficult to leverage what I’ve learned despite being relatively sophisticated.
First, some background. I get most of my care from northern Virginia-based Inova Health System, including inpatient, primary care, imaging and specialist care. Inova has invested in a honking Epic installation which links the majority of these sites together (though I’ve been informed that its imaging facilities still aren’t hooked up to core medical record. D’oh!) After my last visit with an Inova doctor, I decided to register and use its Epic portal.
Epic’s MyChart has a robust, seemingly quite secure process for registering and accessing information, requiring the use of a long alphanumeric code along with unique personal data to establish an account. When I had trouble reading the code and couldn’t register, telephone-based tech support solved the problem quickly. (Getting nearsighted as I move from middle- to old-aged!)
Using MyChart, I found it easy to access lab results, my drug list and an overview of health issues. In a plus for both me and the health system, it also includes access to a more organized record of charges and balances due than I’ve been able to put together in many years.
When I looked into extracting and sharing the records, I found myself connected to Lucy, an Epic PHR module. In case you’ve never heard of it (I hadn’t) here’s Epic’s description:
Lucy is a PHR that is not connected to any facility’s electronic medical record system. It stays with patients wherever they receive care and allows them to organize their medical information in one place that is readily accessible. Patients can enter health data directly into Lucy, pull in MyChart data or upload standards-compliant Continuity of Care Documents from other facilities.
As great as the possibility of integrating outside records sounds, that’s where I ran into my first snag. When I attempted to hook up with the portal for DC-based Sibley Memorial Hospital — a Johns Hopkins facility — and integrate the records from its Epic system into the Inova’s Lucy PHR, I was unable to do so since I hadn’t connected within 48 hours of a recent discharge. When I tried to remedy the situation, an employee from the hospital’s Health Information Management department gave me an unhelpful kiss-off, telling me that there was no way to issue a second security code. I was told she had to speak to her office manager; I told her access to my medical record was not up for a vote, and irritated, terminated the call.
Another snag came when I tried to respond to information I’d found in my chart summary. When I noted that one of my tests fell outside the standard range provided by the lab, I called the medical group to ask why I’d been told all tests were normal. After a long wait, I was put on the line with a physician who knew nothing about my case and promptly brushed off my concerns. I appreciate that the group found somebody to talk to me, but if I wasn’t a persistent lady, I’d be reluctant to speak up in the future given this level of disinterest.
All told, using the portal is a big step up from my previous experiences interacting with my providers, and I know it will be empowering for someone like myself. That being said, it seems clear that even in this day and age, even a sophisticated integrated health system isn’t geared to respond to the questions patients may have about their data.
For one thing, even if the Lucy portal delivers as promised, it’s clear that integrating data from varied institutions isn’t a task for the faint of heart. HIM departments still seem to house many staffers who are trained to be clerks, not supporters of digital health. That will have to change.
Also, hospitals and medical practices must train employees to enthusiastically, cheerfully support patients who want to leverage their health record data. They may also want to create a central call center, staffed by clinicians, to engage with patients who are raising questions related to their health data. Otherwise, it seems unlikely that they’ll bother to use it.