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 want need 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.)