"It's all about the information!"
— Cosmo, played by Sir Ben Kingsley, to Robert Redford in "Sneakers"
You call up a doctor's office for an appointment. You tell them your name, your concerns; they may ask for an insurance update. They give you a time and date. This is information. You are in an exam room with the nurse or physician; you tell them about an ache or pain. It is information. They order tests and images of your arm or shoulder. You get blood work and a MRI or X-rays. It is information. You are referred to a specialist. There may be a procedure or a hospital operation performed, rehab, medicines; it is all information.
Where does all this information go? Whose medical record is it? Of course, that's simple, you say. It is your information, because it is about you. But not so fast. Your employer paid for part of the premiums. Doesn't payment constitute a right to know? Insurance companies feel it is their authority, since they are paying the bills. The doctor makes a diagnosis. Does that imply ownership? And what about the pharmacy, hospital, labs and radiology services?
In fact, in the electronic era, there is no real record. There are only 0s and 1s, tiny electrons. Yes, it is about you. Yes, the information is sometimes so personal even your mother doesn't know. However, someone has to make the medical record real; it does not exist in one place at one time. Legions are generating and using the information on your behalf.
In days past, I have seen patients bring their own form of a medical record into the office or hospital in the shape of a sack filled with pills and empty containers. That hodgepodge collection of old and new prescriptions is the chronicle of this person's health and sicknesses. Others have arrived with literally a shoe box with papers collected over the course of an illness or a lifetime. Still others' medical records are an attempted description of some blue pill they were supposed to be taking. Or it is a daughter-in-law who is the one assigned to take grandmother to all the various clinics and doctors. She is the medical record.
In my office, currently the medical record is a folder of papers. Even with good dedicated staff, there are papers missing, others misfiled, labs not retrieved, images not seen and trends not plotted. The worst is not knowing what is not there. In two words, the current state of medical information in this country is "deadly awful." That is in good times. After Hurricane Katrina, clinics all over the Gulf region opened their offices and found only wood pulp. Others were seen laying the private papers out on their home driveways to dry.
This has to change; it is changing. How it is implemented is the question. As the patient, you should have supreme control over all your information. Period. Ownership is not the issue; stewardship is the question. Since the information can be in multiple sites and forms, it is the bringing together of that information that is the job of the stewards — people who do not own your information but who have been charged and paid to care for it in your behalf. You, too, need to have the information in your own personal health record. Keeping it correct and current will be part of the task that is before us. But there also needs to be a context for the information and its relevance, reliability and significance.
States are now all across the land constructing the structure for this information exchange about you and your loved ones. This process is too important to be entrusted to all the others: payers, government, physicians, IT experts, private concerns. You need to be involved with the process so the stewards get it right.
Remember, it's all about the information.
Joseph Cramer, M.D., is a fellow of the American Academy of Pediatrics, a practicing pediatrician for more than 25 years and an adjunct professor of pediatrics at the University of Utah. He can be reached at firstname.lastname@example.org.