I Have Seen The Portal, And It Is Handy

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.

About the author

Anne Zieger

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

5 Comments

  • Hi Anne,

    I’ve experienced your situation when dealing with my son’s care. While the IT systems exist to hold the data, it’s (a) very hard to get the data out of the hospital and (b) when you find mistakes nobody wants to correct them.

    What’s interesting about this is the EMR vendors routinely take a media pounding about information blocking, whereas the reality is that there is no incentive for the hospital to help you so their staff often do the blocking.

    Great article!

    All the best,

    Colin

  • Colin,

    Glad you found the article to be helpful. It’s scary to contemplate how much “sneakernet” work is required to condense and centralize you or your dependents’ medical records, isn’t it?

    At least we *can* get them online now. I once contested a decision by an insurer to deny coverage of my older son’s hospital stay, and I ended up having to send state regulators perhaps a thousand pages of paper! (I did end up winning but still…>

    -Anne

  • An excellent article about patient portal especially Lucy (I heard it from you for the first time).

    Our government has pushed over $30 billion in past 5-6 years into healthcare information technology and we are still talking about 10-year roadmap. It is not uncommon today that patient records may be located in 5 or 6 patient portals. The ONC and HHS has spent billions on HIE but there is not much to talk about.

    You wrote that Lucy will handle “standards-compliant Continuity of Care Documents” but there are few EMR install which are standard.
    We may be the only application which has solved this problem by creating a free DIY tool within ZibdyHealth which can take BlueButton complaint continuity of care document (CCD) in XML format and import into ZibdyHealth. It will work with all top tier EMR vendors’ CCD. Our user can download a report in generic CCD which can then be uploaded into any EMR thereby creating a personal health information exchange (HIE). We are not aware of any such tool available even after billions have been spent on this effort. You can learn more about this at http://goo.gl/H4vp6l and http://goo.gl/48yg0W.

    I will be glad to walk you through via webex.

  • Anne,
    I completely understand what you have been through. This issue could simply be resolved by creating a standardization for application communication, much like HL7, that is agnostic to any application certified by CMS guidelines. The main change to some of the previous comments would be to create an HIE or a US master database that requires every practitioner to submit the patient’s encounter as soon as it is closed, this would be automated of course. I know the discussion has to do with patient portals but patient participation and the accuracy of their data, work hand-in-hand with the physicians clinical documentation. There are ways to ensure patient participation and high percentages of accuracy of that data. It has everything to do with the technology used, ease of use and mandating certain data sets in order to proceed in the completion their registration. The capabilities of statistical reporting would create phenomenal solutions for our health care system. These statistics would allow us to practice preventative medicine, not reactive medicine and to prevent unnecessary and expensive testing or the correct testing rather than a large sample to narrow down the possibilities. Imagine how many billions of dollars that could be saved by preventing 50% of our potential diabetic population from becoming actual diabetics using specific stats, advance lipid testing and other specific less expensive testing. Not to mention the fact of how happy (patient satisfaction) patients would be and the level of participate in their own care. To take it a step further, working under this type of system would allow for the best physicians in the world to relay their knowledge to all interested physicians simply by seeing their style of documentation (how they practice medicine). Please excuse my ADD, back to the patient portal, the patient would have access to their data from any encounter in the US allowing the checks and balances that Anne was able to provide for herself and helping the patient to stay engaged with their own care by feeling that they are actually a part of the solution.

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