Privacy, a Complex Problem Underestimated.
I have passed my CISSP certification, marking me as an Information Security Expert. I had to pass a complex test and demonstrate that I had three years of full-time security experience to become CISSP certified. I have a four year degree in Computer Science, and I have been trained in Information Warfare by the United States Air Force at the Air Force Information Warfare Center in San Antonio. I have been trained in physical security by the United States Marine Corps (Hoorah). I have worked in Healthcare IT Security for over 5 years now. Frankly, I find the issue of Health Information Security to be extremely complex. Here are examples of the thorny issues that I face as a professional. (this article was originally written about HealthVault, but applies so broadly I removed HealthVault from the title 10-04-11)
There are various State and National laws that govern the disclosure of HIV or AIDs status. These often mean that portions of medical records must be operate with different disclosure rules based on whether they reveal a persons HIV status. For instance imagine the physician discussing a patient with AIDS in the notes section for that patient.
” It would be good if Patient X could maintain their exercise regime. However, given his level of immune function, Patient X should stay away from public gymnasiums, which can be unsanitary. I recommend any kind of constant aerobic activity, three times a week for at least 30 minutes each.”
Normally a message like this would be ideal for a PHR to pass to a personal trainer, however the middle sentence arguably reveals the HIV status of the patient. There was no mention of the terms “HIV” or “AIDS” so a simple text search of the document could not easily determine that it was associated with HIV status. Yet this piece of patient information should be treated differently. The level of awareness that a PHR would need to have in order to determine that the note above is related to HIV status is equivalent to human intelligence. The PHR would need to understand English to such a high degree that it would be very close to passing the Turing Test.
The alternative, of course, is to have a person validate every piece of data to see if they reveal HIV status for patients whose PHR records are tagged with HIV positive status. But how many records could such a custodian hope to manage? What level of human-error would be acceptable from such a custodian? Assuming all the records were correctly tagged, how could a human accurately review thousands of medical data points in a given record?
But even those issues ignore the problem of who tags a record with HIV status. Perhaps the patient should be in charge of tagging the account with HIV status, so that automated systems could attempt to handle the rest. But what if a patient wants to withhold that status from the PHR?
What about Family planning and pregnancy status? Physicians must be very careful to follow local laws to know what extent a patients parents can be informed about their under-aged daughters reproductive condition. However, any other medical condition would obviously be under the purview of the child’s parents or guardians.
There are also cases where the patients themselves cannot access their own records. Many psychiatrist records must be protected in this manner.
Can a patient remove the information that they have diabetes from their own record? Can they remove their allergy to penicillin? What if they removed it on accident? If patients can accidentally remove data, or can remove a diagnosis or allergy that they do not like, how can a physician or other healthcare provider rely on the contents of the PHR? If a physician knows that they cannot rely on the contents of the PHR, why would they both to add information themselves. If physicians do not add information to the PHR, why should its contents be trusted. Electronic trust is tricky.
If the patient cannot totally control every aspect of the record, does the patient really own the record? Does the healthcare provider own the record, even though the law often compels providers to produce and distribute a patients record?
How much information should payers (insurance companies, etc.) be able to see? Payers certainly must be made aware of the procedures that they will be paying for, but they should not be given so much information that they can discriminate inappropriately.
Lets sum up. Medical records belong to the patient, except when they don’t. They should be accessible to the patient except when they shouldn’t. The records of minors are always open to their guardians except when they are closed. Segmenting data in order to protect portions of health information is currently an intractable problem of free-text analysis. Tagging patient records with critical information is difficult. Trust is far more complex than is first seems. Finally, patients should be allowed to “control” their own record, except when that control would allow them to do something that would invalidate the record.
This is just a taste of the kinds of problems that I have run across during a career as a health information privacy professional. Notice that a deep understanding of several of these problems requires enough Computer Science know-how to understand why free text analysis is a difficult problem. The other problems required at least shallow understandings of medico-legal issues, which seems simple until you consider how you are going to design a PHR or EHR to meet these requirements.
How do you design a PHR so that “control” can be so finely parsed? How do you put the doctor in charge sometimes, the patient in charge other times (except to undo what the doctor did), the teenage daughter in charge, for only one of her medical issues, in such a way that her parents are not informed about that one medical issue, but are in charge of everything else?
In short “patient privacy” is a very, very complex problem that requires some pretty high level thinking and is pretty easy to mess up. When you see someone pretending like there is a simple solution to these problems, you should be very suspect.