Do Patients Have a Right to Understand the EHR?

February 21, 2013

A Kentucky electrophysiologist created a satirical post recently that positioned the EPIC EHR as a computer game.  Screenshots of platform were used and he was subsequently forced to remove the images.  Wes Fisher caught the story and has the necessary links.  While I didn’t feel that the original post was nearly as clever as it was provocative and snarky, Wes’ pithy analysis broaches some interesting questions about EPIC’s response.  More important than the specifics of this type of public dialog is what’s behind it all.

For me, there’s a broader question that I find interesting: Do patients have a right to see and understand the EHR that their doctors are using to facilitate their care?  And if the patients were to experience a mainstream EHR first hand, how would providers be seen differently?  How would patient advocates see meaningful use?

It’s not a crazy question.  Physicians are often criticized for their attention to the second screen.  And the failure to properly shift our focus from the EHR is always on the head of the doctor.  Yet we never consider the experience of this individual who’s legally and ethically responsible for the collection of the patient’s story.

What if e-Patient Dave were put in the drivers seat of the provider with EPIC?  What if Kerri Sparling were forced to sit and enter her story in Cerner?  And what if it were onstage and live streamed at HIMSS or Medicine X?  It shouldn’t be complicated.  They know their story better than any doctor.

No satire.  Just real people showcasing a user interface.

I suspect that it might lead to an interesting and very contagious public conversation surrounding EHRs and the responsibility of those who create them.


pheski February 21, 2013 at 10:52 am

I suppose that if the contents of the EHR were truly private and accessed/used only by the clinician inputting the data, one could attempt to make the argument that the patient has neither a need nor a right to see/understand the information. I think this argument would fail, but that is irrelevant.

The clinician creating the entry in the EHR is going to use it for decision making, without or without the collaboration of the patient. Other clinicians are going to use it to assess the patient and the problem. Insurers are going to use it. Attorneys may end up using it.

Just as consumers have both a need and a right to know what is in the record of their transactions with their bank, investment firm, Amazon account, credit card, so they have both a need and a right to unfettered access to the data in THEIR medical record, electronic or otherwise.

I don’t really see this as debatable or controversial.


DrV February 25, 2013 at 8:30 am

I think the point was missed based on the way I framed the post. What I was suggesting is that if patients knew how difficult it was to navigate and enter information into the mainstream EHRs, they’d be outraged.

The nature of the information is not what I was getting at.

Ileana Balcu February 21, 2013 at 11:24 am

“What if e-Patient Dave were put in the drivers seat of the provider with EPIC? What if Kerri Sparling were forced to sit and enter her story in Cerner? And what if it were onstage and live streamed at HIMSS or Medicine X? It shouldn’t be complicated. They know their story better than any doctor.”

This should have been the way any new Healthcare IT system was designed in the first place. In order to be efficient, you need to at least allow (if not encourage) the patient to enter their data and their story in the system.

DrV February 25, 2013 at 8:30 am

Bingo. My 9-year-old daughter should be able to do it.

Dan Munro February 21, 2013 at 5:48 pm

I wrote something similar when Dr. Lamberts was lamenting the new EHR he had just selected for his practice.

We’ll be living with this for a long time – largely because the primary function of most EHR software isn’t capturing clinical data – it’s designed to capture (and report) billing data.

Seinfeld did a funny skit on this – back in the day when it was still paper-based. Elaine peeked into hers – only to find out that she had been labeled “difficult.” The skit was both funny and reflective of the broader challenges around patient-provider communications.

Ravgen February 21, 2013 at 7:18 pm

I believe the patient has a right to see, considering it is private information about them.

DrV February 25, 2013 at 8:31 am

Again, the right to see information is not what I was driving at. Rather the difficulty in entering that information.

AfternoonNapper February 21, 2013 at 11:31 pm

Let’s examine the question: “Do patients have a right to see and understand the EHR that their doctors are using to facilitate their care?” First, reframe the question to reflect a basic user/operator relationship—the television viewer and the cable man. The cable man is, most likely, a hired contractor assigned to deliver a service that the viewer wants. Does the viewer NEED to understand how his television works, and the cable that runs to it from the pole, and the system that delivers the signal, and the basic premise of frequencies and waves and so forth? No. The viewer does not need to understand these things. However, the viewer, does indeed have the RIGHT to understand them, as the viewer is a human in America. Whether the viewer chooses to pursue that knowledge is up to him.

Patients too are humans. Humans have rights. Patients therefore have the right to understand anything whether it does or does not directly impact their care. It is a right to knowledge, and to deny that right is, at it’s worst, censorship, and at it’s best, pedantic.

The question must be reframed to ask—are healthcare providers responsible for fulfilling patients’ rights to understand their medical care, including EHRs? No. I do not believe it is my doctor’s job to teach me how to use his EHR. However, if I am expected to participate in its use, even through a patient portal, then yes, I do hold the EHR developer and doctor’s overall medical practice responsible for making it possible to understand the EHR is use and its effect on my patienthood. This could be accomplished through video tutorials, put out by the EHR developer, and linked through a practice’s webpage so that patients may access the videos at any time. Patients are then responsible for their own choice as to whether or not to pursue the knowledge.

As for the example of putting ePatientDave or SixUntilMe up on stage to blindly navigate an EHR, the experiment would, of course, be a failure—and the patients consequently made an example of for their lack of understanding, which is unfair. Would any doctor wish to go up on stage and use the tools of someone else’s trade without any training? What a hoot we journalists would get out of putting a cardiologist up on stage and asking him to layout a magazine and send it to press—what a riot!

If asked and if given a functional user interface that either required minimal training or no training, many patients would indeed relish the chance to input their own medical history, as a medical history, by its current definition, relies too much on facts and symptoms, rather than any context as to what those facts and symptoms meant to the patient effected. A patient given the opportunity to input more than just what is clinically relevant would present a more complete picture of him or herself—a human.

It is not lost on patients that there is a human responsible for inputting medical information and that humans make errors. The problem we have is that when you’re not looking at us, we worry you’re not listening to us, and when you’re not listening to us, you’re not ascertaining the wholeness of the problem. Without understanding the wholeness of the problem, the provider can not provide a meaningful solution.

RP February 22, 2013 at 1:03 pm

Up until recently, our institution considered it an offense worthy of termination if you were to peek into YOUR OWN medical record. “Difficult patient” indeed?!?

EPIC also has a strange aversion to allowing likenesses of their product out in the wild. I had made a teaching video which had some images of EPIC. My hospital’s IT department came down fast and hard. This was an transgression punishable with termination of EPIC contract and millions of dollars in fines, apparently.

Why? My unfounded opinion is that EPIC is better served when people are in the dark about their product. They make so much money on these service contracts.

@Cascadia aka Sherry Reynolds February 22, 2013 at 7:46 pm

The questions we ask often frame the outcomes and in this rare case you are asking the wrong one.

“Do patients have a right to see and understand the EHR that their doctors are using to facilitate their care?” Yes is the easy answer but I don’t really care how my TV or my Iphone works exactly (honestly does anyone really understand how the signal from your phone reaches someone in real time around the planet)? The question could be – does the doctor and patient have the communication and documentation tools that meet both of their needs?

Just as an aside except for diagnostic tests and or surgery nearly all “care” happens outside of the doctors offices and is in fact facilitated by the patients themselves. For a diabetic this includes everything from taking meds, doing exercises, testing blood, eating right, getting to appts, coordinating docs, knowing your history etc.

Some of us are BOTH patient advocates and at least in my case have actually trained providers (including surgeons) for years on EHR’s like Epic so yes we do in fact know exactly how to use them and how to design exam rooms and work flows so that the provider doesn’t have to feel like it is comes between the patient and the provider any more than the old paper charts did.. (most docs under 40 can type far faster then they can write by hand so perhaps it is a generational thing?

Cheryl Handy February 23, 2013 at 9:29 pm

There are really two versions of EHRs. There is the electronic version that stays with the medical care provider. There is the second version that appears on patient portals for patients to access lab, radiology reports.

Both from my perspective as a patient advocate and a patient, I do not believe that patients have a “right” to understand either version of their EHRs. Physicians prepare the EHRs to be utilized by other “medical care providers” (eek, I distain that generic, broad job title) and not lay people. The usefulness of the EHRs will be compromised if the information is dummied down for the average patient (like myself).

Patients do have the right to understand the reason for tests, tests results, diagnosis and any other information in the EHRs that will benefit the patient’s well being. The patient has a reasonable right and expectation that the physician will communicate, listen, answer questions.

I am not even a big fan of abbreviated forms of EHRs in patient portals. The information available to patients in the patient portal systems often contains TMI that provides no useful information, leads down rabbit holes and causes confusion for the patient.

For example, radiology reports may identify a “potential issue” and even suggest additional testing. In fact, a decision may be summarily be made by physicians that the “issue” is in fact a “non-issue.” But the radiology report wouldn’t necessarily include the discussions and final determination about the “potential issue.” And the patient is left with just enough information in the patient portal to be unnecessarily worried.

I have a disturbing image of a patient printing the patient portal version of his/her blood test results. Then, results in hand, the patient Googles “understanding blood test results” and panics at every value that is mildly out of normal range. Again, TMI. Instead of interpreting his/her own blood test result, patients should rely on physicians to discuss the results.

Cheryl Handy February 25, 2013 at 11:15 am

Per my previous comment, as Roseanne Roseannadanna would say “never mind.”

No offense, I am certain that you nine year old daughter is very smart Dr. V, but the reality is that MAs with very little education and training *are* entering very important health care information into patients’ EHR. Anytime there is data entry (especially by non-professionals), there is human error.

The likelihood of human error is magnified when combined with the fact that the EHR market is controlled in large part by one company – EPIC. And, EPIC is very territorial, not nimble, does not allow for individualization for the specific needs of medical facilities and physicians. Hospitals purchase EPIC and, for all intents and purposes, are then owned by EPIC.

It is shocking that (as noted by Forbes), by the end of this year, 40% of the US population (127 million patients) will have their medical information stored in an EPIC digital record. It is even more shocking that EPIC’s CEO is not interested in providing the capability for the EPIC system to be integrated into other medical record systems.

Again, as it bears repeating, hospitals sign up for the EPIC system and are effectively owned by EPIC. EPIC determines when system upgrades will be available and when functionality changes will be introduced.

Hospitals accept the massive EPIC system because they rationalize that it is the biggest and, therefore, it must be the best system. Indeed, EPIC holds the largest market in this area. And, federal appropriations have paid for implementation of EPIC.

As Manl and Kohane stated in their New England Journal of Medicine piece, “it is a widely accepted myth that medicine requires complex, highly specialized IT systems. This myth continues to justify soaring IT costs, burdensome physician loads and stagnation in innovation – while doctors become increasingly bound to documentation and communication products that are functionally decades behind those they use in their civilian lives.”

They continued “EHR venters propagate the myth that health IT is qualitatively different from industrial and consumer products in order to protect their prices and market share and block new entrants. In reality, diverse functionality needn’t reside within a single EHR systems and there’s a clear path toward better, safer and nimbler tools for managing health care’s complex tasks.”

Paul Levy is correct that EPIC has a tremendous corporate risk. Since EPIC contains a big piece of the American market (paid for by federal appropriations), if something ever goes wrong (like a coding error or decision support error that results in direct harm to patients), the likely outcome will be dozens of Congressional committees coming down on EPIC. The questions will be “isn’t EMR a medical device like those regulated by the FDA?” “Shouldn’t EMRs be regulated by the federal government for that reason too?”

The EHR system must be nimble enough to incorporate non-traditional encounters and communications. There are instances where physicians ask one another questions in emails or other casual means. Those communications rarely make it to paper records and certainly not EHR. Example: my dad’s oncologist emailed a hospital radiologist and asked whether a very tiny liver lesion could ablated. The radiologist said absolutely as long as the ablation is performed sooner rather than later. There was no procedure whereby that casual email communications would make it into the paper medical records or EHR. Dad never knew of that communication until it was too late.

“Meaningful use” as it relates to the goal of “patient empowerment” is meaningless if physicians are opting for large companies (such as EPIC) that do not allow for individualization by the practitioners. The more non-nimble the EHR system, the less likely it is that the medical records are useful for patients.

Ileana Balcu February 25, 2013 at 12:01 pm

Your comments about EPIC’s dominance and nimble EHR are very true, I just want to comment on your first sentence: that data is entered with major errors – in a well designed system, the patient enters data that is then validated by the nurse and the doctor with the patient. It takes less time to validate and correct errors than it does for the nurse/MD to enter the data – and three sets of eyes will see more issues with the data than one tired MD or nurse entering everything!

Cheryl Handy February 26, 2013 at 9:41 am

The problem with patient entering his/her own data is that patients *do* know their story better than the MAs, nurses, doctors. My story is full of (in my opinion) denial of care, poor treatment. Chances are I would not be able to put my “real story” in the EHR. My story would be considered a risk management issue on multiple levels.

If I put my story (or my dad’s story) in the EHR, the nurse and doctor would want to remove it. Tension would prevail. I would be considered a “difficult patient.” All I would want is medical care. But, ultimately, the doctor-patient relationship I was trying to establish at that visit would suffer.

DrV February 26, 2013 at 9:45 am

Of course I probably should have positioned my point more clearly. It was to suggest not that patients know their stories better but rather to showcase the difficulty with entering data into an EHR. If patient advocates knew this, we would see the whole second screen differently.

Cheryl Handy February 26, 2013 at 9:51 am

Yes. There is a big problem with entering the data into rigid EHR systems. It would be ideal if every physician’s office within a medical facility could enter the data consistent with the specific office’s needs, preferences. But, like any opportunity to get control and money, the big corporations (like EPIC) get federal appropriations and force individual offices into a rigid system.

Interesting query whether EHR will ultimately be deemed a medical device and subject to FDA control and congressional oversight. But, alas, we will save that issue for another day and another walk with Molly. :-P

Ileana Balcu February 26, 2013 at 9:50 am

I respect that. But if I have a story that I want to share and that would be useful to the doctor/nurses I should be allowed to enter it. It’s not mandatory, it’s an option.

I was labeled difficult patient for an year in my doctor’s office. I incidentally sent my doctor an email with my story (prior pregnancy ending in stillborn baby) and a thank you for being patient with me. He put it on the first page in my file and everyone started being nice to me. I made the connection afterwards and learned my lesson: you are human when you tell your story in respectful terms.

And yes, you are human if you do not tell your story to avoid making others uncomfortable too.

kgapo March 12, 2013 at 6:59 am

The answer cannot be anything else but YES, INDEED.
However, even in countries where the patients by law have access right to their medical record, the question is what doctors do to facilitate the understanding of the medical record by the patient. My answer would an easy nothing.
In Greece, we are not yet in the EHR era, doctors keep handwritten notes on the patient record, which is mandatory in hospital setting, but not enforced for medical practices where the bulk of medical consultations is.
First, I would ask how many doctors can confirm honestly that they take a detailed patient history and that they note it down? How many do consult their previous notes at a subsequent patient visit and do not ask the patient to tell again his story? How many doctors note down in the medical record the results of previous tests and do not ask patients to bring them along in every visit?
Doctors who care and take time to explain the diagnosis, the therapeutic options, who listen to the patient who really write down a medical history, at least in my country, are the exception. As still today the exception are doctors who accept to discuss the information that a patient has found and noted on the internet, even if it comes from the same trusted sources that the doctor himself consults.

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