Privacy and Your Medical Records

Your personal information online? Is it all it’s cracked up to be?

When it comes to health and technology, few issues get as up close and personal as the implementation of an electronic medical record. Handing over all or some of your most private information to complete strangers in order to maintain control of your personal health status seems paradoxical. As is so often the theme in these stories, there are two sides to the coin.

Nina Boulus, a research assistant with a background in computer science and expertise in electronic medical records is completing her doctoral work examining the multiple perspectives in this complicated game of moving from paper-based charts top a digital version. While everyone would agree there are many players with a stake in the process—patients, health care professionals, equipment vendors, governments—hardly anyone agrees on exactly how the system should be rolled out.

By now many of you may have heard of Google Health. It’s an example of how you can start to manage your health record all by yourself, free of charge, on your own computer. Microsoft and others are trying to get in on the act, but in my opinion after looking at the competition Google has the edge. It works by a series of seemingly simple steps: sign up (just like you would for other services offered by Google), start tracking and learning about your illness, import your medical records (this will be done for you although it’s extremely limited at the moment), view your medical history, use the software to keep track of what’s going on like when you need to refill you prescription, and then even search for doctors and hospitals.

But according to Boulus, this electronic patient record is a portal into the comprehensive and more controlled electronic medical record used by people such as doctors, nurses, pharmacists and others. You are not getting your complete information from a hospital or clinic. But you might get what you need in order to feel as if you are now in control with lots of information about your health conditions on your screen. So far it all sounds positive.

The number one issue on everyone’s mind is privacy (I’ll examine this in detail in the next column). But there are other factors, often missed by media reports but definitely on the mind of patients. Boulus has interviewed people who don’t like feeling “outside” of the process, having a computer screen between them and the physician. So while you’re waiting for your doctor to finish typing (and waiting and waiting) while you have lots more to say, it all becomes a bit awkward.

Doctors also worry about what is lost when they miss all the potential body language and clinical cues that come from a close encounter in an environment of trust. According to Boulus, there is a distinct difference when people sit down face-to-face with eye contact happening as opposed to the physician staring at a screen waiting for your answers.

Of course for every problem, there are solutions. Physicians can share the screen, showing trends and graphs in a visual display that quickly and easily demonstrates improvement, deterioration or status quo in a specific health condition. There is no doubt that ordering tests and verifying results can be faster, easier and even cheaper. And if a patient has done their homework and read about their condition they can be informed and the discussion with their doctor can be elevated to a whole new level as strategies are planned and decisions are mutually agreed upon in a truly collaborative manner.

But before all this can happen, the hospital or clinic based record must be in place and in most places it isn’t. In Canada, Alberta and Prince Edward Island have systems in place that keep all records in a central digital repository. This is reassuring for anyone who has been to multiple health care practitioners and worried about whether information is being properly shared with everyone else. Did your family doctor get that report from the neurologist you saw two weeks ago or is she still waiting for a handful of faxed papers?

Some of the success of these systems will be due to the perceptions of users themselves. Like banking on line, some find it an imposition, downloaded work. Users themselves must take responsibility for what professionals did in the past. But it is also a chance to take control, just as you might want to pay your bills when you want and from the convenience of your home. Many will probably jump at the chance to take charge of their entire health history, visiting the doctor print-outs in hand.

Boulus points out that the transition to digitize patients’ medical records has been going on since the 1970s. Decades later we’re still debating how to do it, who will do it, who will pay, and on and on. But one thing is clear, the best people to give us answers will be researchers like her who carefully examine everyone’s perspective and then provide policy makers with the help they need to implement this massive transformation.

If you have a comment or question for Guenther email him at gkrueger@knowitallhealth.com

What are science and technology studies (STS)?

STS is a very broad research area that looks at the relationships between technology and their effects on things such as society, politics, and culture. The assumption is that technology takes place in a social context and that people relate to it in many different ways. One approach that STS researchers such as Boulus undertake is to look at things using actor network theory. In the case of electronic medical records, the computer now becomes “the third actor in the room” in addition to the patient and the physician. How the whole system works becomes of interest.