Patients Should Not Control Their Medical Record
Oh lordy is this a terrible idea.
Google and Microsoft are trying to put patients in charge of their medical data, and there’s even some screenshots of the Google Health online application. I love you, Google, and my friends that work for you, but are you honestly this naive about people’s level of health knowledge? Roni Zeiger, primary care doc turned Google Health employee, what are you thinking?
Patients without medical training but that actually understand all the nuances of their diseases and medications, I applaud you; most of your fellow patients, however, don’t. I strongly advocate for patients to read and learn as much as they can about their diseases and drugs they take, but this is not the way to go about it.
I’ll start by bitching, and then offer some constructive suggestions.
What the hell, Google/Microsoft:
- This is supposed to be a medical record, right? For use by physicians, right? Because from the looks of it, you want patients to use medical terminology (which most don’t know, use, or understand) to create their medical record. You want people to know terms like “AV Nodal Re-Entrant Tachycardia” or “Partial Complex Seizure secondary to Temporal Lobe Neoplasm” or “Takayashu’s Thyroiditis,” right? Because that’s what I’m expecting to see in a medical record. Often I don’t hear these terms from patients. I hear that they have, in order, “a funny heart rhythm,” “seizures,” and “thyroid problems.” If the medical record was just for public display, like a web photo gallery or a Facebook profile, “funny heart rhythm” would be fine. But I actually use the medical record to diagnose and treat patients, and “funny heart rhythm” doesn’t cut it.
- Are we supposed to trust this medical record? Now, I know as physicians we’re not supposed to trust anything we don’t see with our own eyes or done by our own lab or radiology department, but at least in a medical record controlled by a medical team, it’s a health care professional that’s putting information in there, so it’s a little more reliable (but far from perfect, doctors are incorrect too). I see patients that say they don’t have high blood pressure even though they do, and their medical record shows they’re persistently hypertensive in clinic; I see patients that claim they have “high sugars” or “pre-diabetes” when they don’t; I know people who read something online making them think they have symptoms of disease X and just decide that they probably have it. I also see patients with multiple allergies, which aren’t true “allergies” but just “adverse reactions.” The two are very different and have very serious differences.
- Should I rely on this data in my management of my patients? Some of these medical records will be great, others will be okay, others will be terrible. How do I know which medical records of which patients to trust? Should we rank patients on their health literacy? What happens if your Google Medical Record lists your blood type as A-, and I give you AB+ blood?
- What’s the point of the medical record if it doesn’t provide me with accurate and up to date data? There are subtleties to labs and reports and studies and findings that don’t often get reported to patients, because at the time they aren’t significant or important. (Note: I try to explain as much as I can to patients, but often it’s easier to explain basics.) For example, if a patient has certain changes on an EKG, it can indicate subtle signs of a heart attack–but if they’re also on an older EKG, you worry much less about a heart attack. I don’t want to see something in a chart that just says “EKG normal on 8/8/2007,” I
wantneed to know more. Also, what if a patient forgets to update their medical record for several years, and has lots of problems in the interim? (Now I fully realize that today’s medical records often miss a lot of medical information and are often incomplete, but if people are proposing major changes to medical records, we should probably think a bit harder about this than just lurching forward.) - What if the patient leaves out medical information he or she is embarrassed or ashamed of? I need to know if you use drugs, or if you have sex with multiple partners, or if you have HIV, or if you’ve had STDs in the past, for example. (Yes, yes, I know, if it’s important, I’m still going to ask about it again, but in the current medical record, if we know about it and it’s relevant, we’re likely to know about it up front in the chart, because the chart hopefully contains relevant, important data, not just the data that’s not uncomfortable to discuss.)
(I know I’m going to piss off a lot of people with this post, but I’m truly not trying to be condescending. I know a lot of patients understand more about their diseases than their physicians, and many are very empowered and active. This is fantastic, but the vast majority of patients are not to this level, and I worry about a system which assumes that patients are active to this level, and even have any interest in managing their medical record. Add to this the fact that even growing up in a medical household, I didn’t really understand many medical conditions–and didn’t even understand them as a pre-clinical medical student, either.)
Let’s work this out, Google/Microsoft:
- I would love you to be a national medical record. I would love for patients to be able to enter basic information about themsevles and then allow their doctors and hospitals to write notes in them and upload data to them. A central repository for EKGs, Xrays, CT scans, Echos, with full reports would be absolutely revolutionary. Absolutely. There’d probably be reactions from patients who read their doctors’ notes and don’t like the way they’re described “Obese gentleman in no apparent distress” or “Patient denies smoking” (as if we’re accusing the patient), but a system where I could see what other doctors saw would be hugely helpful. We get patients transfered from Nevada and Southern California routinely and often have very little information about what happened to them at other hospitals. Scary, huh?
- Help us fix HIPAA. It’s kind of funny–since Google nor Microsoft are health care providers or payers, they don’t have to conform to HIPAA online privacy standards. Physicians, however, have tons of online standards we have to use to access online health information. (Now the question stands, if physicians access these online medical records, will they have to then conform to HIPAA privacy standards?) Please–make it easier to safely protect people’s information online–doctors want it to be less confusing and safer, just like patients.
- I’m all for patients learning about their diseases, and facilitating this is great–but let there be a distinction between patient-entered information and physician-entered information. Or allow patients to add comments or extra information to what doctors say.
Those are starting points. I’d love to hear what other patients and health care providers think. As is now the case, comments are open, but keep it civil–constructively criticize my arrogance if you want. I fully admit that I have a doctor-skewed perspective, and I’d like to be educated about things I’m missing because of it. (Please also note that the people that are online that read health blogs are likely pretty highly educated or have health interests, so your own experience is likely not representative of the patients we normally see.)
I didn’t see anything that indicated these offerings are supposed be official medical records. I didn’t see anything that indicated that the physician is the primary user. The patient is the primary user. The patient is not mandated to use this service, but they might benefit if they do.
Google and Microsoft have devised a competitor to WebMD, with a bit more social networking built in. Having your doctor log in and look at your profile and make suggestions looks like a novel function. To me, it seems equivalent to asking your doctor to e-mail you if they find some information relevant to your condition – a practice increasingly common. This is facebook for health information. Seems like a neat idea and nothing to get your scrubs in a bunch over.
Fair assessment–but from what I’ve read, Google Veep Adam Bosworth thinks patients should be in control of and manage their medical record–my understanding was that this was it.
I am in full agreement with your assessment, Graham, but I think Raffy is right about this rendition of the Google app: it looks like it’s made for patients, and just for patient use. To that end, I think that it’s a good idea, because ideally, we want patients (and perhaps more importantly, their families) to keep track of their health status (i.e. take notes, even if not official). I’ve seen a number of family members accompanying their loved ones carry a notebook detailing symptoms, medications and dosages, etc. This seems like a natural, easy-access and more standardized extension of that idea. Essentially, Google and Microsoft are just adding a new, personal use tool.
However, as you pointed out, there are many problems if Google and/or Microsoft want their system to interface with official health records, or if they expect physicians to make any use of these records when the patients come into the clinic or hospital. I think that’s why Google’s program has the long search-narrowed, drop-down lists of diseases – so that people can try and remember what the doctor said they had, and maybe even confirm it or remember it by the description. Then again, it’s possible (probable?) that Google’s search just isn’t sophisticated enough yet to really tackle the various presentations of diseases, how they’re characterized, and what distinguishes between them.
There are several things about this that creep me out, most of which you touched on already.
1. The biggie is privacy. Most people aren’t aware that Google tracks your searches. It does. When I search “pacemakers” from work, I get results from medical web sites. When I search the same term from home, I get patent web sites. Do you think this is because my husband is a patent researcher? It most certainly is. When I search “west nile” the first thing that comes up is the Ontario government web site. Do you think that’s because Ontario is the world leader in West Nile, or because Google can see my IP address? No privacy measures are perfect, but this gives people the illusion of control over their health information.
2. My second problem is what you already mentioned about health literacy. Both medical professionals and Google employees suffer from a common problem: the assumption that they are the norm, and others are the deviant. This is a huge problem for health literacy. I work in a university. Everybody I talk to today will either a) have an undergraduate degree at minimum or b) be in the process of earning one. In fact, the people I spend the most time talking to (other medical librarians, nursing faculty, doctors, epidemiologists, etc.) all have Master’s degrees or higher. Yet according to statistics for our cachement area, only 6% of the population in this area has a postgraduate degree. A stunning 27% did not finish high school. yet looking at my social circle, my family, my colleagues, etc. I would never know that. I imagine Google employees come from a similar world, where everyone they encounter is similarly educated. It is a huge fallacy.
People are far more mobile than in the past. We can’t have a system that is geographically based when someone like myself has lived in 4 jurisdictions in 3 different countries before turning 30. We need a hematologist in Vancouver to be able to communicate with one in Hong Kong to determine if her patient (a Canadian resident) is a compatible bone marrow donor with her sister (a Chinese resident). I’m just very leery of any documentation that lacks controlled, standard vocabulary. Of course, that is the librarian in me talking!
I’m with Apollo. It would be great if patients could add to their medical record — as long as those additions were clearly marked as added by the patient.
Off the top of my head — patient-entered data would be useful for tracking blood sugar and blood pressure measurements made at home, and for keeping diaries of things like seizures or migraines.
As both a librarian (non-medical) and IT professional I have to say that they haven’t done their due diligence on this research wise. As a patient with a PITA disease that non-specialists think they understand, I love the idea of being able to document issues I’ve had. But I digress.
There is a missing element here, most people are going to need some sort of intermediary – whether that is a nurse or medical librarian or some other health advocate is going to be determined over time. There is still a large portion of the population that will need hand-holding because all those test numbers and results are not all that easy to understand – and can have different meanings in conjunction with one another and medications and – you get my drift.
The human body is a multi-system biomachine with a lot of interaction we do not yet understand. Personally, I think they are trying to create a medical informatics file to track disease trends for pharmaceutical companies that will in turn, pay them lots of money for advertising dollars :-)… Ok, I’m only half-joking.
Pax,
MLO
Wait, so you think that people knowing what their allergic to, what medications they take, and the names of the conditions they have is a bad idea? Guess I disagree there.
I also agree with the commenter that said this doesn’t seem like it’s meant to be an official health record.
Also, doctors takes patients’ words for things all the time. If I tell a doctor I have diabetes I have yet to have a doctor ask to see the lab work that diagnosed me. If someone tells their doctor that they had the chicken pox in 1975, they believe them. Or if a patient says they haven’t eaten or drunken past midnight. On and on and on.
Oh, I also wanted to say that I like your ideas for the ideal system.
Perhaps as EMRs gain ground, a section of chart for the patient could be constructed with the medication and problem list. Giving patients control of the doctor’s notes about them serves no purpose.
Our EMR has an option where patients can have access to limited amounts of their own health info via the Internet. It seems to give them enough info without giving them so much (even CT reports) that they’re calling peoples’ offices worried. If they go outstate, they can pull up their own modified EMR via the Internet and get what the MD says they have for diagnoses, meds, etc.
Princess Graham, Learn a little law before you start having fainting spells. HIPAA establishes that healthcare consumers OWN the information in their medical records. Doctors own the paper its written on. Given this legal situation, it is perfectly correct that consumers should control what is theirs.
Patients should be able to delete information that is embarrassing to them. They may get worse care, but that’s their choice, not some nosey med students’ with obvious control issues.
Okay, admittedly, I haven’t viewed the screenshots because I’m blind and can’t see them. My thoughts though, are that if what a patient writes in their records is distinguished as the patients perceptions/personal record, it would be okay. If I say that I’ve got a strange heart rhythm, but really have sinus Tachycardia, that could be helpfull because you’d know that I didn’t totally understand my condition.
As a former high school newspaper writer, I don’t think we should be able to change our records of what the doctor writes. If I miss-represent/edit your words and it’s not clear that it’s my perception of what you charted, there are ethical issues.
But I think the solution to the too much information would be an agreement between doctor and patient. I’d prefer having lots more information, because I can then have a reminder of what my doctor and I discussed. It would be very neat to have a method of the doctor linking to a patient information sheet in her/his notes, and me being able to read them. This would be more like a social network situation, I think.
Caligirl, did I understand you correctly? Patients should be able to modify the medical record?
That is IMPOSSIBLE. You just can’t take care of patients that way. What if the patient deletes mention of alcoholism, then goes into DTs in the hospital because you no longer had access to that info?
Yeah, I’m not sure what kind of “Dr.” “Dr. Caligari” is, but it’s clearly not an MD. This would never fly–HIPAA gives them protected access to the record, but not to cherry-pick and edit.
This is a great discussion on a serious matter for the 21st century of medicine! I think it is inevitable that patient-centered records will be used online. I also think that it is best if Google sets the standard and raises the bar for all other competitors… there is nothing wrong with patients being concerned about their health and requesting their own medical records so they can best fill out the form when they have “Takeyasu’s arteritis” or “Neurofibromatosis.” I think it’s cool that they want to know the name of their disease and learn more about it through more official channels (assuming doctors are providing the linked information on these diseases) than a misspelled google search that whisks them away to an altie site claiming that their best treatment is laxatives, lemon juice and herbal supplements.
So I guess I agree with the “private facebook” idea. Caligari has a very twisted opinion of what this is supposed to represent — it’s supposed to be YOUR TRUTH, not a declassified government document with black marks streaked across the page to clean it up and make you “look good”!
Yes, a medical record helps the doctor care for the patient by containing all relevant information. Ideally, another doctor should be able to read the chart and pick up where the first one left off. Unfettered “editing” is never allowed–doctors are not allowed to erase information–only simple strike outs. Patients, if they have any input, have been allowed to insert additional notes…i don’t like the idea, but it’s better than actual editing.
I’m not a medical professional, but I have been active in managing my father’s care for several years. I always want to know the correct name for his symptoms and diagnoses, and I try to get copies of his blood work and other test results whenever I can (it’s not easy, even though the information does legally belong to him). I have a 3-page list of my father’s conditions and medications, and also an “event log,” all of which I update periodically. But my experience is that after he leaves the emergency room (where they really appreciate this information), the document is buried at the bottom of his chart and no one looks at it again. Sometimes the discharge instructions get the medications wrong (and I don’t mean the ones that were changed during the hospital stay).
When he’s released from the hospital and a visiting nurse comes to check on him, she inputs all this information into a laptop, apparently for all agency personnel to access, but the next nurse who comes out never seems to have read the file. I have had the experience that a treating physician has not taken the time to glance over my father’s medical chart before entering the examination room, so I am called upon to remind him why he is seeing my father and what treatment he has already prescribed. (And this is not a strategy for gleaning new patient insights.) So I would hate for this Google system (or any other) to give patients a false sense of security, thinking that just because the information is there, entered in the system, that someone has actually read it. Serious mistakes can be made when the patient assumes the provider is fully informed while the provider assumes that the patient will say something if, for instance, there are allergies or adverse reactions to consider.
I think the idea of allowing a patient to enter information in his or her own chart is great, but only if it is distinguished from the “record.” Patient notations could be especially handy for jotting down questions to be asked at check-ups — the doctor could access and answer these questions even if the patient has forgotten all about them by the time of the appointment. But do any of you really believe that doctors will be reading patient charts (in their spare time?) and sending links for further reading to them? I find that highly unlikely.
And finally, my concern with the entire system is that employers and insurance companies will gain access to this information and use it to make hiring and coverage decisions. I think that part is inevitable, and just like with social networking sites, people will not think about the ramifications of exposing themselves online until after the damage is done, say, speculating about what illness they may have contracted on their last vacation, or asking questions about that debilitating but non-life-threatening illness that runs in their family.
Interesting discussion!
It could be used in a way that’s similar to most online menstrual cycle trackers. Patients could log their symptoms, see if there are patterns, and bring this data to their physicians during their annual exams. This just provides the physician with more information on which to base their diagnosis and treatment – it wouldn’t be “official” in any way. The patient wouldn’t necessarily use clinical language, s/he could instead use descriptive language such as “strange pain in chest after jogging” or “strong stomach pains after eating ___.” This could potentially be a really useful tool, because a lot of the time people forget to mention the strange symptoms they had four months ago when they go for their annual exam.
hi nice post, i enjoyed it
Graham, awesome post. Good call.
And Caligari, much respect to your doctorate, but waaaay off the mark. “Patients should be able to delete information that is embarrassing to them.” People are embarrassed by lots of things, sometimes very medically important things relevant to treatment. They aren’t in the record for a “nosey” med student.
I wish people were required to put the degree behind their name, not just “Dr.” in front of it.
hi nice post, i enjoyed it
[...] Graham at Over My Med Body has some nice lists on why Google is wrong and on what Google should do. [...]
Great discussion everyone. I think that it is a very good idea for patients to be able to log their medical records online. I myself am a huge fan of computerizing everything, and I think it would help a lot of patients and their caregivers keep track of things/research their conditions etc (though I am still skeptical of how secure Google would keep it all).
That being said, there needs to be one very very clear distinction. This needs to be viewed as a personal medical record, not an official chart.
As was mentioned by others, many patients with low health literacy (vast majority of patients) may not completely understand their condition (I have “heart problems” = history of MI, arrhythmia, CAD, valve prolapse …?). They may put in one thing and mean another, typo dosages, or leave out “unimportant” information.
Using Google Health or similar services needs to be viewed as if the patient is telling you something or brings in information they wrote themselves — usually helpful, but sometimes taken with a grain of salt. If it is able to be edited by patients, it cannot be treated like a chart. Make a wrong decision based on it and you are in trouble. Ignore key information you are unsure of and you could be in the same bad spot. Good tool for patients, but make sure it’s in its proper place.
This is a terrific discussion, mostly because it involves both docs an patients. I think the above ideas about “parallel” records is very creative.
Managed care has actually veered away from having patients know their full diagnoses. So the idea of a patient “parallel” chart is excellent. As an ER physician at night with little to go on, such a chart would be a good way to start in on a problem.
When I had a private office, I had my patients reduce their last EKG to credit card size when they traveled. You can often avoid being hospitalized if you can produce such an EKG so the ER doc can write “no change.”
Chuck Phillips, MD, FACEP
I think Google is just trying to squeeze some interesting data out of patients. Think of the data-mining possibilities… and since people have pretty much forked over their privacy the second they started using Gmail, there’s no problemo. Drug adwords ON the patient record! Scary.
What happens when a patient writes that they are “pre-diabetic” or puts down a diagnosis that has not been confirmed but they believe they have. Example: patient is convinced they have fibromyalgia but not official dx of same.
Now an insurance company decides to look this up on the now available internet and uses the information against the patient.
Isn’t this a potential issue?
I do like the idea of patients having meds, dosages, a copy of their latest EKG and documented health history available to them. But can’t they just make a list with the help of their physician? We have one doc who prints out a summary of the patient’s meds and issues after every visit and hands it to the patient. These are invaluable in the ER.
Patients can have access to their medical records at any time. Do they really need to put it up online where anyone might get access to it (legally or not?)
Sorry so long winded. Summation: Good intentions, bad idea.
[...] Stanford medical student who blogs at Over My Med Body!. Nearly two months ago, Walker wrote an impassioned post arguing that patients shouldn’t have the ability to cherry-pick and edit their own records if [...]
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