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.