Jason over at Healthcare Economist seems to think this is a good idea. I have to disagree with the specific instantiation described here (going solely on Jason’s description). Besides the obvious problem, pointed out by Jason, that most people have way too little expertise in medicine to properly document their health history, making that history significantly less helpful for future readers, aka future physicians, there is the password problem. Either the data is properly contained and can only be accessed with the password or it is improperly contained and the password is useless as a full out security measure. I suspect the latter implementation given the description of the ‘publicly’ accessible confidential information.

My next question stems from this separation. Why are you putting information in that you don’t want your physician to see? Is the interface on this at all clear on this point? (Hint: no interface is ever clear.) At that point, who does this confidential information help? And why the accusation that Microsoft or Google will be selling your information? Frankly, I trust them more than some obscure 3rd party.

On point 3, Just because your name is not attached to information does not mean that your identity cannot be extracted from it. This is a key difficulty in implementing my fantasies about electronic medical records (just remember the AOL Search Data fiasco).

Finally, the more general case for 3rd party EMR data is not extremely strong itself. It is already rather expensive to pass information around. Will creating several more data storage entities, each with their own red tape, make getting the data around any more efficient and/or secure (these should not be viewed as trade-offs, an inefficient ’secure’ system will increase frustration with the procedures and enable more effective ’social hacking’).

Nevertheless, patient access to their own records is something that I would like to see.

An EMR that protects your privacy?

Electronic medical records (EMR) hold the promise of vastly improving the quality of medical care received in the U.S. today. One of the major issues with EMR is privacy however. Patients generally want their doctors to know as much about their health as possible in order to make the best possible medical diagnoses and treatment decisions.

Yet who should you trust with your EMR? Physician groups are generally too small to efficiently implement EMR. Further, if you switch doctors, most patients want their EMR to follow them. What if the health insurers are put in charge of the EMR? This may make the most sense, but some health insurers can use the EMR to learn more about the health of their enrollees. While this seems like a good thing, when a certain enrollee gets sicker, they may decide either to increase their premiums or to try to drop their coverage. A clear conflict of interest exists here.

What about a third party EMR vendor? Google and Microsoft both are offering EMR services. But do you really want one of these enormous corporations selling your most personal medical information to other companies?

One solution to this problem is Keyose.com. Created by Dr. Julio Bonis, Keyose is a completely anonymous EMR service. Here’s how it works:

1. Users sign up and enter their personal health information.
2. A username code is generated along with a public and private password. The public password is printed on an ID card that doctors can use to access medical information. The private password enables users to update their medical information. Further, Keyose allows patients to use their private password to enter confidential medical information that people with the public password (e.g.: physicians) will not be able to view. This allows patients to manage their own health care information.
3. You do not enter personal data (e.g.: not your name or an e-mail) when you sign up in Keyose. Thus, you will not receive any marketing materials. Even if a hacker breaks into the system, they will not be able to match your medical information to your name or email.
4. Finally, it is free to sign up.

As you know, there is nothing in life that is free. How does Keyose plan to fund this project? According to their “Help” section:

In the future we could include information about sponsors (including private health insurance companies, pharmaceutical or biomedical industries) mainly intended for doctors who access the personal health records. We could also charge for premium services (for instance translating the personal health record for international patients or providing contextual information about a patient’s diseases).

There are drawbacks to this patient-based EMR. Patients do not use the same jargon as physicians and, thus, much important information could be lost in translation between the physician and the patient. Also, the information is uploaded by the patient, and not physicians, nurses, or trained staff.

I tried out Keyose myself. It was pretty basic and could have used more pre-defined fields (currently there is only DOB, gender, blood type, allergies, and personal and family history). Specific fields detailing whether or not you have certain allergies, or whether you have received certain vaccines would be helpful. Also, I could view the confidential information section even when I logged in using the public password.

Nevertheless, Keyose does seem like an step in the right direction.