Having Access To Medical Records Is Useless For Most Patients

I knew up front that it would be ugly. After two years of treatment, a chronically-ill patient like me generates a lot of records, and I had every reason to expect that they would be disorganized and dense.

Still, when I sat down to tackle the 600-odd PDF that Kaiser Permanente made available, I was pretty intimidated. Yeah, when I say this I can almost hear you thinking “well, duh!” but your warnings couldn’t prepare me emotionally for the document that I got.

In any event, this encounter with my personal data has convinced me that if CMS doesn’t change its strategy, pushing consumer engagement with their online medical record will prove to be a complete waste of time.

Actually, getting my records was actually amazingly easy.  I logged into my Kaiser portal and navigated little difficulty to a link I could use to request records for the past two years of treatment. Having been a patient with Kaiser for just over two years this was perfect,

Within 24 hours, Kaiser has sent me a link to the FTP site for which I could download my records, and creating a login for the FTP server was simple. I logged in, clicked to fetch the PDF and voila, there it was. As an aside, this was a stunning exception to Kaiser’s usual foot-dragging and bureaucratic bluster, and my guess is that their Epic system deserves at least some of the credit.

In any event, you’ll be far from surprised to learn that from that point on, things got a little crazy.

First, it was the predictable but unfortunate fact that the document was 643 pages long and completely chaotic. Visit records from various providers were displayed in random order, with encounter information from say, May 2017 followed by documentation from November 2019 then August 2018.

Updates from my primary care doctor were followed by nursing notes from urgent visits, then records from podiatry consults the year earlier. There were pages and pages of repetitive blood pressure readings.

Now, because I’ve been part of the healthcare business world for decades, I had a pretty good idea what to look for within the masses of data. And because I’ve been a technical editor for just as long, I had the skills necessary to sift through all that information visually and isolate the parts that I needed.

In fact, I’m happy to report that after investing an hour or so, I was able to zero in on one particularly important consult report which could ultimately prove helpful in addressing some diagnostic concerns I have.

That being said, if you think the average individual has the time, expertise, energy and context to fish out valuable information from this flood of words, you’re nuts. Even among my coterie of medically-informed, educated patients with complex care to manage, my guess is that the vast majority of them would roll their eyes and give up if they had to take on a document this size even once, much less on an ongoing basis.

The reality is this: if patients need to have a sophisticated understanding of their condition(s), know how medical data is organized and why, patience, time, strong editorial skills, persistence and the willingness to manage their own care to get something out of their medical records, it’s never going to happen.

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.

2 Comments

  • Ms Zieger thank you for your article about the “patient portal” of your healthcare system. The title was a little daunting which enticed me to read your article of course. I did follow your plight well in your story but felt the acronyms like “CMS” and “FTP” could have been explained a bit more. I am not a writer so please excuse my brief statement. I have been and Electronic Medial Record consultant for quite a few years and have supported EPIC and Cerner and other EMR systems. Many times I have supported the registration departments. Almost all departments are required to ask the patient is they would like to be a part of the patient portal to be able to have access to their medical records. This is a required request for most facilities. This portal not only allows you to get your medical records as you have experienced it also helps patients communicate with their provider privately, see their test results, schedule appointments and update information as needed. While you have had a not so good experience with your information being such a hodge-poge of disarray my question is if you have sent a comment to your healthcare provider to request that their setup be more chronological? Many times the builders are not aware of how the information is displayed for the end user. These systems are built to help with medical access be more available and forthcoming for the patient. Any suggestions you can give will be definitely appreciated for the next person as the EMR’s are constantly trying to build a better system.

  • I think the over all focus here is that, we’re being sold access to our health records will do something for us? I agree with the with Ms. Zieger, unless you have some relevant medical knowledge, what’s the point of the history, you’re not a clinician and it’s dangerous to treat yourself as such.

    Now, access to the records that provides chronological view of treatment such as trending blood work and other tests is more meaning I suspect.

    There’s value in access to reschedule and communicate with your doctor based on some news on your treatments. Rescheduling is simple But I believe is better suited via chat bot text to scheduling departments vs portals.

    Good discussion article!

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