Electronic Medical Record - Electronic Patient Record - what are the differences and just who has access to what?
In Western society we tend to place special emphasis on certain domains that we consider particularly private. One of these is legal matters—the conversations you have with your lawyer are highly confidential—and health. So it’s no surprise that when the issue of electronic medical records comes up, privacy is everyone’s major concern.
Researcher Nina Boulus, is an expert on these digital systems. She’s completing her PhD examining the implementation issues from everyone’s point of view. She points out that there are actually two different systems as I mentioned in the previous column – Privacy and Your Medical Records (June 6). The institutional system, often referred to as an electronic medical record or EMR (although there are other names), and the electronic patient record or EPR which is the Google Health, Microsoft HealthVault, or Dossia types of models. Check them out, you might be surprised at what is already available.
It all seems tempting, total control over your health records. At least the parts that are not kept from you by the institution. Legal jurisdictions vary but certain things such as notes about your psychological condition or the fact that your disease is terminal blur the lines between what should be available to you and what should not.
When Boulus asked people about their concerns around EMRs in general, they quickly associated the system with the Internet and of course that’s considered vulnerable territory these days. Everyone worries about hackers and viruses. And with good reason.
But people were quick to pick up on more subtle aspects of the patient’s medical record, now digitized and available to anyone with the authority to open it up on screen. Patients worry—quite rightly—who will have access to which parts of the information. The Los Angeles Times has reported that in the US up to 150 people might view an average patient’s chart. Will they all see just what they need to see?
Physician Robert Steinbrook writing in The New England Journal of Medicine points out that at present only about one percent of respondents to an online survey said that they had personal health records (the EPR) and that even fewer had personally controlled electronic health records (the EMR). But that could all change. Perhaps you’re reading about all these developments for the first time. We all know that things catch on quickly in a wired world.
There are other issues. In the US there is the Patriot Act which allows the government access to information for security reasons. People in Canada for example have made it very clear they’re not happy having their data on American servers where they can be viewed by government officials. Sometimes this is a valid distrust of exactly where the information will be stored. As computers become ubiquitous, so do the server farms which require huge volumes of power to run and cool them. These systems, often the size of several football fields, are being built near power supplies (Google is in the process of building a site near the Columbia River in Oregon precisely for that reason), and plans are to place some in Siberia where cooling is not such an issue. How would you feel about your medical records being in the Russian Federation?
People are also concerned about loss of information, perhaps because most of us have managed that on our own computers at one time or another. There are also concerns about other technical problems, backup, system crashes and so on. There is even concern about what will happen to the old paper chart. Will it be destroyed? Kept around for a while or even a long time?
Nevertheless, Boulus feels the technological allure is too great. Just as computers have reached every business desktop, the electronic health record is on its way. It’s all in the way it is introduced, explained, and developed. No one would dispute the speed and convenience of having everything at your doctor’s fingertips.
There are, in fact, many other advantages. Information can easily be shared among those that need it. Wouldn’t it be nice to not have four different people ask you whether you have allergies? Space can be saved, less paper is environmentally more attractive (although it is offset by those servers gobbling power), physician’s notoriously bad handwriting might be a thing of the past, and long-term storage might be simplified.
The biggest beneficiaries might be those with chronic conditions, those people who make regular and frequent visits to many health care providers. Of course, as we age that is more and more the case for all of us. But not matter how the system evolves and what benefits it has, privacy and confidentially will stay as a top priority for everyone.
If you have a comment or question for Guenther, you can contact him directly at guenther@knowitallhealth.com