Reports indicate that more than 20 percent of all medical costs in the United States go to maintain the current paper-based record-keeping system. The average hospital moves five million pieces of paper every year. Paper records can be viewed by only one person at a time, and during an average hospital stay a patient’s file is seen by an average of eighty people. Every doctor you visit has a record that is unconnected from your other medical records.
Or at least it used to be that way.
A centralized medical records database would address the access limitations inherent in paper records, but privacy and confidentiality concerns pose huge problems.
Remember one of the basic new principles of information: Information expands as it is used. Instead of all that paper being passed around, imagine the efficiencies of the digitized version of the same information available on a distributed network. Instead of each professional maintaining separate and distinct records, all of your records would be centralized and instantly accessible.
Such centralized database facilities are already under development, and in some cases currently being tested. As the health care industry continues to rapidly consolidate into a handful of providers, the potential for abuse becomes obvious.
More likely than not, you’ve never heard of the Medical Information Bureau. If you are one of the millions of American citizens on whom the organization has information, though, you’ve probably felt the impact of the Medical Information Bureau in various parts of your life. The Medical Information Bureau is an insurance company clearinghouse of medical information related to individuals.
Here’s how it works. When you apply for insurance, you will likely be required to sign a release form allowing your potential insurance carrier to exchange information with other insurance companies. This exchange of information takes place through the Medical Information Bureau.
The organization was originally designed to prevent fraudulent insurance applications but quickly grew to include disparate bits of information that would be of interest to the insurance industry.
Consider this fictional scenario, for example. You visit your doctor for a routine checkup and sheepishly mention—in the course of the inevitable small talk conversation with your physician during the course of the examination—that you’re having a bit of a hard time with a hangover from the office holiday party last night. The doctor idly makes note of this seemingly irrelevant information. You don’t drink much at all and last night’s festivities have left you feeling under the weather.
Your doctor routinely submits your patient records to your insurance company and the Medical Information Bureau. And the most recent entry includes your comment. This bit of information remains in your medical files but you don’t know anything about it until you apply for life insurance.
You are shocked to learn that you’ve been denied life insurance coverage based on your history of alcohol abuse.
Your life insurance company is a Medical Information Bureau subscriber.
What seemed like an innocuously irrelevant comment in passing, during what you thought was a private conversation, has suddenly had a tremendous impact on your life.
What you thought was harmless, the Medical Information Bureau found significant.
No federal laws protect the privacy of medical records except those related to drug abuse and psychiatric care. Few states have medical privacy laws. Like most of the other information we provide about ourselves, our medical records don’t belong to us; they belong to whomever assembled them.
And there is virtually no limitation on what can be done with them. Your medical records can be sold to your insurance company or employer, for example. In fact, if you work for a medium-sized or large corporation, chances are you signed away your rights to protect your medical records from being shared with both your insurance company and employer the first time you received medical care under your health plan.
In September 1997, the Clinton administration proposed legislation that would allow law enforcement agencies to gain almost unlimited access to individual medical records, without the knowledge or consent of the subject of the records. Law enforcement authorities insist they need access to all medical records in order to more effectively investigate fraud in the health-care industry, even though they are not medical experts and unqualified to interpret medical records. At the same time, the proposed legislation would restrict access to medical records by employers, researchers, and marketers (who are also neither medical experts nor qualified to interpret the records).
Imagine suffering an apparent stroke and the attending physician being able to access your medical history instantly. It could save your life. Now imagine your mortgage application being denied because the lending institution accesses your medical records and discovers your history of strokes.
An appropriate solution is to strip all personal identifying information from shared medical records using a system of strong cryptography while granting ownership rights of all records to the subject. We would each have the right to decide who has access to our records and what they could do with them.
