Your data or your life

Your daughter has just been in a car crash. She falls unconscious on her way to the hospital, but not before she is able to tell the paramedics the name of her doctor. This is vitally important because the emergency room won’t know that she’s an insulin-dependent diabetic with a penicillin allergy, but her doctor will be able to give them her relevant medical history.

Or, at least he would be if he’d renewed the tech support contract on his medical records software. He didn’t, though, and now his information—and your daughter’s—is locked away in a proprietary database he can’t access.

As unlikely and alarmist as this sounds, it could really happen. Intracare is the publisher of a popular practice management system called Dr. Notes. When some doctors balked at a drastic increase in their annual software lease, they were cut off from accessing their own patients’ information.

This situation is completely unconscionable. There can be no truly open doctor-patient relationship when an unrelated third party is the de facto owner of and gatekeeper to all related data.

In the short term, cases like the example above are all too possible, and simply unacceptable in every way. With today’s large practices built around large numbers of patients, many using multiple prescription medicines, these practice management systems are absolutely critical and can’t be permitted to be held ransom. Additionally, doctors in the United States are saddled with a giant bureaucratic tangle known as HIPAA. Even if a doctor and her software vendor are working happily together, the government may take a dim view of an outside party controlling access to patient records.

In the long term, patients could lose their own medical history as doctors migrate from one proprietary system to another by simply starting over rather than paying thousands of dollars for expensive data format conversion. Even if you have an excellent personal relationship with your doctor, a relocation or changes to your insurance could make you need a copy of your records to give to a new doctor’s office. Your old physician may know to monitor that funny looking spot on your shoulder, but might not have entered it into the new system he put in place since your last visit.

Finally, practice management software can be extremely expensive. Doctors have to pass these expenses along to their patients, increasing treatment costs for all involved.

Fortunately, the situation isn’t entirely bleak. New online communities are developing to build and market free software solutions. LinuxMedNews is a regularly updated online forum for discussing industry news. GPLMedicine is a similar site maintained by Fred Trotter, project manager for the Free software ClearHealth management system. A project by Canada’s McMaster University, OSCAR, became the first IT system certified by OntarioMD.

Although these don’t have the name recognition among the medical community of commercial ventures such as Dr. Notes, they’re available for testing and implementation—free of charge and usage restrictions—today.

If you are a doctor or other healthcare provider, you owe it to yourself and your patients to take a look at these forums and applications. At the worst, you’ll find them uninteresting and unuseful. However, you could also find ways to protect your patients’ and your own best interests—all while saving money.

If you are a patient, print a copy of this blog and hand it to your doctor next time you see her. She may not be aware that there are viable alternatives to the expensive, restrictive systems she’s been leasing. If she’s not interested, you’ve lost nothing. If she finds something useful, though, then you may have done a real service to yourself, your doctor, and your fellow patients.

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