Cloud computing, your patient information, and privacy

In the not too distant past, healthcare providers sometimes worried that reliance on technology might put private patient information at risk. For example, they might have debated whether having a computer technician restore information from a damaged hard drive might be unethical, as the technician would see confidential patient information.

Gradually, both patients and providers became comfortable with the burgeoning reliance on digital storage of patient records. It was, in fact, the convenience of being able to share the information with specialists, pharmacists, specialists, and so on that made electronic medical records so appealing. Further, patients enjoy being able to access their records online, communicate with providers through email or other web-based technology, and make scheduling and payments over the Internet.

When I first heard the phrase “cloud computing,” I was excited to think I might be able to put things in “the cloud” and access them from various devices. Indeed, I do enjoy being able to access the music and videos I have on iTunes from my laptop, desktop, and handheld devices. I assumed, though, that my files were in the cloud because I wanted them there, but I was surprised when someone told me of having all her files restored by a technician who got them from the cloud. She had no idea that her files were in the cloud in the first place. As excited as she was to have these important files restored, it was a bit disconcerting to know that they were in the hands of third (and fourth or fifth?) parties in the first place. How many technicians in how many companies have access to our information?

So, now we move to electronic medical records, a digital archive of our most private information. As noted in the American Medical News blog, in 2011 55 percent of office-based physicians used electronic health records and 41 percent of those were in a cloud-based system. The blog, by Pamela Lewis Dolan, cites information from Jonathon Padron, senior client service analyst for comScore, and Internet analytics company. From the blog: “Because EHR data give marketers the ability to target messages in a more granular way to the specific physician, it’s very effective for marketers, Padron said. For example, the system can identify the condition a physician is looking at and automatically pup up a drug that can treat it.”

These ads are linked to keywords, of course, just as you see ads related to a condition you search on WebMD. We trust that our searches, the doctors’ searches, and our names and medical records are not combined for nefarious reasons. Howard Burde, a health IT lawyer, offers this assurance: “The technology is improving such that data is more and more secure all the time. The problem isn’t the technology, it’s the people.” Everything is all right then, see?

I see two bits of take-away information in all of this: 1. Our private health information is being spread further in cyberspace than we might care to think about. 2. Pharmaceutical and device manufacturers will aggressively use any means available to insert themselves into our healthcare decisions by targeting healthcare providers and patients with intrusive influence at all levels. Of course, if access to healthcare, or at least health insurance, is actually guaranteed by the Affordable Care Act, we may be less concerned about our information being shared. I don’t want to be embarrassed by my private information, but I prefer being embarrassed to being uninsured.

Genetic testing, the Affordable Care Act, Ethics and You

In Slate, science writer Virginia Hughes published an essay decrying what she sees as superfluous or even harmful discussions around the ethics of genetic testing. She says, rightly, that some ethicists are discussing the wisdom of closing the door on testing after the “personal genomics horse has bolted.” It is true that genetic testing is here and will not go away, but we certainly haven’t worked through all the challenges posed by testing, information-management, and client care.

One of the major ethical challenges of testing, I hope, is being helped by passage of the Affordable Care Act. Starting in 2014, patients with preexisting conditions in the US will be able to purchase health care insurance through affordable insurance exchanges. Currently, though, one fear of testing is that it would reveal preexisting conditions that would otherwise be invisible and make it impossible for some people to get insurance coverage even while healthy.

Hughes hardly mentions that particular reason for the concerns related to testing.  She says in one sentence, “Would adding this data to someone’s medical record affect health insurance rates?” After raising this question, she neither answers it nor discusses it. I would think the ability to buy and afford health insurance is one of the major concerns for patients who consider the risk of exposing genetic determinants of future diseases. Medical testing is assumed to be confidential, but patient records are, of course, shared with insurance companies.

Another concern for people considering genetic testing is that the information revealed by the tests may lead to discrimination in employment. Without legal protections in place to ensure that employees are protected in the event a genetic test reveals a likelihood of future illness or disability, concerns about having the information available are quite rational.

Setting aside concerns about insurance and employment, which are monumental, Hughes addresses the issue of how information may harm patients. She is of the mind that full disclosure is always the best policy for health-care providers. The question of when it is appropriate to withhold health information from patients seemed to arise as soon as anyone began providing health care. The question has been around so long, of course, because it is both extremely important and because different patients express extremely divergent preferences. While some want full disclosure, others would prefer to be left to enjoy their lives ignorant of impending doom.

The most confusing part of Hughes’ essay is when she states, “While wasting time debating ethical dilemmas, the medical community has neglected to talk about more pressing logistical problems: 1) How to ask people ahead of time what, precisely, they want to know (and don’t want to know); and 2) How to improve the medical system so doctors can follow through on those wishes.” The two “logistical problems” she identifies are exactly the kinds of concerns expressed by the “ethical dilemmas” noted by ethicists. Yes, what is the best way for doctors to give patients exactly the kind of information they want without revealing unwanted information? These are the ethical dilemmas ethicists are wasting time debating.