I have identified a new unidentified sinister force. Not much has changed since the USF of erstwhile President Nixon’s Watergate drama, but the USF I have identified very possibly has the potential to undermine what’s left of consumer medical privacy, deeply and forever. Forget potential; it’s a done deal.
Nothing on the Internet is private or impermanent. The “Your Health Portals” that have sprung up are not for patients’ convenient access to their medical records–though I suspect that was the scheme our faithful government health care system touted, in order to make health portals mandatory under the Health Insurance Portability and Accountability Act (HIPPA).
A new industry was born: a compulsory health care records system, located in the Cloud, and, so importantly, private (well, except for authorized data mining and various staff unknown to patients). Patients, of course, tend to have ludicrously archaic ideas about their records being their own.
I have no evidence, one way or the other, that points directly or indirectly to a gainful alliance between any particular politicians with chunky favors to hand out, and electronic records entrepreneurs. I honestly haven’t the endurance to research that angle, though I wish someone would.
These portals, or EHRs (Electronic Health Records), or EMRs (Electronic Medical Records) are competitively marketed to health care providers. Again, they are mandatory. Everyone supposedly finds them convenient because they have everything in one place. This is possible because data mining finds things from multiple sources that refer to one individual.
All of a patient’s physician and hospital records can be accessed by all authorized persons. How handy for your dermatologist–and his Trusted Authorized Staff (TAS)–to know how you and your drug counselor (you didn’t tell your dermatologist you had a drug counselor??) are doing!
While the list of access-authorized persons does include the patient, the patient is not authorized to correct errors: even errors that could kill him or harm his reputation. Only his health care provider who made the error can do that; but of course, this task is usually placed back in the lap of the TAS who made the error in the first place. I have discovered serious errors in my hospital portal, and in the portal of one of my specialists. It is very unnerving to see something like this and contemplate the consequences that might easily have arisen, had I not reported the errors.
Now, the competitive marketers I mentioned above are also in the loop: your loop and my loop. These guys are not just drop-off vendors. They are the miners who keep everything together. But the pitch is, “Data mining provides more information for everybody!” “And that helps us identify at-risk patients!” Right. Who’s afraid of preëmptive quarantines, anyway?
Given the prevalence of inaccuracy and improper data recording, are we really zeroing in on the right at-risk group?
In fact, we’re all the group at risk. It seems to me that the abundance of mineable data, collected in many cases from careless input, is the real risk that encroaches not only on patients’ privacy, but also potentially on their health and reputation. (Case in point: A substitute intake person in a doctor’s office labeled every new patient she interviewed the day she worked there an “Habitual drinker.” In fact, all turned out to be light or non-drinkers. The doctor thought it odd (he’s an ophthalmologist) and asked her whether she was sure she had heard the patients correctly. He then realized she wrote down what she thought the patients meant, not what they actually said. She did not know what “habitual” meant.
Office computers have a default program that sends inputted records to the EHR system, where they are formatted and launched into the Cloud. Since I was one of the brainchild’s “habitual drinkers,” my attorney husband sent the doctor a pleasant letter informing him of the situation. The doctor corrected the records himself. Had I not taken the trouble to check out my Portal, I’d still be another Cloud-based Habitual.
As patients, we of course pay for these cloudy portals with increasing health care costs, underwriting new mandatory technology, along with our own peril.
I’m more than a little skeptical. I’m also in compliance with Former Homeland Security Czarina Janet Napolitano’s prime directive: I am very afraid.