I’m at the gigantic HIMSS health IT conference in Orlando, in the consumer pre-conference. In my opening talk I briefly mentioned something I’ve said for years:
Have you looked in your chart? Your medical record? Do you know for a fact that there are no errors in it?
Most audiences appear intrigued and thoughtful at this. But ha ha ha, at HIMSS (people who work in health IT), on Twitter there are two interesting reactions:
- Several different people tweeted it, showing unusual interest in it, and more than a dozen retweeted those
- And, a whole bunch of people are saying “Who says?? What’s the source??”
How fascinating. Well, here’s what I know about it.
- 18 months ago I spoke at the Veterans eHealth University, a virtual university for people who work in the VA (veterans’ administration) health system. They asked me to submit some interactive audience response questions.
- One was to ask the audience if they had checked their own record. The results are in the slide above. (Sorry about the typos – that’s how the A/V guys typed it into the computer.) Results:
- 50 / 66 (76%) said no, they’d never looked. (Have you?)
- Of the 16 who had looked:
- 5 (31%) weren’t sure whether there were errors.
- Of the 11 who were sure:
- 7 found mistakes (64%)
- 4 found the record was perfect (36%)
So, roughly: of those who had checked, about 2/3 found mistakes: missing allergies, wrong medications, wrong diagnoses, etc.
Since then, depending on the audience, I’ve asked this of other audiences. Every time of those who’ve checked, about 2/3 found errors. Every time.
This is not a peer reviewed journal article. I’d love to see one! I also encourage all health IT speakers to ask their own audiences. Maybe mine aren’t typical, somehow.
And by the way – if you’re skeptical, do you know if your record contains everything doctors and nurses should know about you, and doesn’t contain errors?
As always, discussion is welcome!
It’s like the old Capital One commercials – do you know “What’s in your wallet?”
Updates added later:
- At the British Columbia Patient Safety & Quality Council conference later that week, in a post-keynote workshop, I asked the room about this:
- Of more than 100 in the room, eight had examined their entire records.
- Of those, six had looked errors, and two had found them completely accurate.
Carolyn Thomas says
Hi Dave – I’m not skeptical that there may well be errors in our records, but I am thinking this was seven people out of 11 you’re talking about here.
A survey reporting conclusions from just seven people is dinner party conversation, not a quotable stat suitable for future conference presentations.
Is there something in the water today? I’ve been seeing SO MUCH on Twitter lately that makes me ask the same questions: “Who says?? What’s the source??” If credible sources are missing, better to leave the “facts” out!
Believing simply does not make it so. . .
e-Patient Dave says
Sure, I know, Carolyn – did ya read the rest of it? Every additional audience I’ve asked has been right around the same ratio: About twice as many hands say “there were errors” as say “I checked and I know there weren’t.”
It’s absolutely fine with me if this isn’t the global reality. Absolutely fine. Meanwhile, I keep asking people: Have you checked yours? Are you sure there aren’t mistakes in it? You’re hyper-engaged (yay!) – feel free to ask your audiences.
The other thing I said in the speech was that this is an excellent way to get people started on engaging with their records: BEFORE there’s a crisis, have ’em check and see what kinda stuff is in there.
(Consider also this tweet today from someone in the audience: “@lifedashcourt: When @caresync got my family’s records, I was SHOCKED at errors & things not mentioned to me from our charts.”)
Again, I’m not attached to this view – that’s why I’m saying exactly what I’ve seen with my own eyes. I’ll welcome yours. :)
Carolyn Thomas says
Thanks for your prompt response, Dave! Again, numbers DO matter. And if they don’t matter, don’t use them.
A number that seems far more compelling than those seven people who did find errors was that gigantic percentage of respondents (76%) who had never bothered to even look at their medical records in the first place!
Now THAT’s a stat to be focusing on.
It’s hard enough to convince hospital admin-types to provide open health data to patients when the stats seem to merely confirm their opposition: patients are just not interested!
Similarly, in my women’s heart health audiences, I always ask for a show of hands to the question: “How many of you know what your blood pressure is?” followed immediately by this question: “How many of you aren’t sure of the numbers, but your doctor has told you that your blood pressure’s just fine?” A shocking number of hands fly up at that second question, and THAT is the issue. These are not only average healthy people but heart patients (!) who not only don’t have a clue about a basic health indicator like BP, but don’t have even the slightest interest in finding out.
It’s the “Don’t Worry Your Pretty Little Head” attitude that a hierarchical medical tradition has trained patients to adopt. And (judging purely from your informal stats and my informal show of hands survey), it seems to be working.
Disclaimer: First, I am @lifedashcourt, who tweeted this week, and second, I work for CareSync, a company that helps people get access to their health information through a records retrieval service, and then transcribes the Plan, Assessment and other important info from past medical visits into structured, codified (read, shareable) information that is meaningful, because it makes sense to a non-clinical person, such as myself. Thoughts here are my own.
I used our services to have access to my family’s entire past medical history. I have a minor neuro condition that I manage with a daily medication routine, but in general, tend to be health. My son had ear complications as a newborn, tubes at 1, then some speech issues (reasonably connected to hearing issues) in pre-school; completely healthy, normal 7 year old today.
When our records (keep in mind, FULL records, not the snapshots we get in the portals at our hospital system) came in, I was truly shocked at some of the errors, or even more prominent things not effectively communicated to me/us, because they didn’t seem to have anything to do with a chief complaint, or why the test was ordered in the first place.
I blogged about this months ago on the CareSync blog; but what was written in my son’s speech therapy discharge record couldn’t have been more different than what happened; the record said that they suggested he should stay in speech, the therapist (same one who signed the chart) told us that his progress was amazing, and to get him reevaluated when he started kindergarten in 3 months. It brought me to tears that the official documentation implied that I didn’t make the best choice for my son–and who knows how that could come into play if someone was facing a custody battle, etc.
I had a C-spine MRI done in 2011, a year after my neuro Dx. It was unremarkable for what they were looking for (signs of MS); and the top-of-the-line neuro hospital called to tell me that. It wasn’t until I looked into the report and actually digested the information that I learned there was significant degeneration of multiple discs; but they had nothing to do with what they were looking for, and therefore I didn’t know. What I did know? That I’ve been going to the chiropractor 1-2x week for the past three years because of neck and upper back pain. Good to know!
I agree and disagree that people aren’t really interested. In a lot of cases, people are not interested. Even before we started this business a couple of years ago, I’d done a phenomenal job of getting my son’s records each time that we moved. I did a less stellar job for myself and my husband. That said, all of those records are paper, in a drawer, and I hadn’t ever bothered reading them. It wasn’t until the information was dissected and presented to me in a way that I understood it (and while not clinical, I have been in healthcare tech long enough to talk most of the talk) where I digested it in a way that was meaningful to me.
Additionally, even if YOU don’t care about your health, chances are pretty good that someone else does care about your health. So, putting my CareSync hat back on:
My childhood best friend asked for CareSync for her birthday last month–her very first record came in and said she’d had a mammogram. She’s 35, no family Hx of breast cancer and knowa that she did not have a mammogram.
Other CareSync members have reported finding errors and things that were never conveyed to them; we hear it almost every day.
I believe that it boils down to this: we know we should care, even when we’re healthy (especially when we’re parents), but we are busy, the process is a total pain in the rear end, and for most of us, the chart might as well be in a language we don’t speak.
Sorry for the novel! Thanks for the RT.
e-Patient Dave says
Comment on Twitter from @K80Hume: “Asked a colleague – her chart incorrectly said she had Hep C!!”
Helen Shirts says
Accurate patient records are critical for seamless continuity of care as providers transition to a new EHR system. Legacy data is full of inconsistencies which can be dangerous if not transitioned into the new EHR correctly. Automated data conversion alone is not enough! It can leave up to 60% of data behind and doesn’t meet the strict quality standards for medical records. When asked, none of the migration service vendors we queried at HiMSS had an answer for how to handle exceptions and data fall out. Our mantra is “Quality = Safety” so we’ve developed a method for 100% data capture with near-perfect accuracy. We hope that we can move the needle in the industry to include higher standards for EHR data migration.
e-Patient Dave says
A quick update … on June 10, 3+ months after this post, the Wall Street Journal ran a front page piece that validates the smaller-scale numbers I cited above: “Studies show errors can occur on up to 95% of medical records…”
(The full text is hidden behind a paywall.)