Power to the patient

If dropped, my medical file would hit the floor with a "whomp." It’s thick as a phone book—and that doesn’t include hard copy of the many scans I’ve had.

There are compelling medical reasons why electronic medical records would be an improvement over unwieldy paper records, including the prospect of better continuity of care. If I visit a specialist in Portland, I’d like to know that he or she has quick and easy access to all prior reports. That way my care is more likely to be both informed and consistent with what’s gone before. It’s demoralizing to have a doctor waltz into your exam room and say, “So tell me what’s going on?”

You’re supposed to know that, doc. That’s why they pay you the big bucks.

I’m no utopian on the subject of EMRs, however. There are huge issues of system compatibility, security, and confidentiality, to say nothing of user inertia. Most doctors over 50 will go to their graves resisting anything that calls for their fingers to hover over a keyboard. Perhaps it wasn’t a coincidence that my last oncologist retired shortly after the Corvallis Clinic introduced an in-house computerized patient record system. He was hopeless at a computer.

The actual information that’s contained in your medical records belongs to you, by the way. If you want to put your doctor’s stethoscope in a twist, just ask them to hand over a complete copy of your records. No one has flat-out refused to provide copies of radiology reports or lab results I’ve requested, but the odds that it takes a follow-up phone call before they appear are about 50/50.

I suspect the reason hospitals and doctors jealously guard medical records is they don’t want to open themselves up to second-guessing from patients—or patients’ lawyers. That lack of openness not only keeps patients like me in the dark about things I want (and deserve) to know about, but also prevents the sort of social networking for disease groups that might improve our care and save lives.

Imagine, for example, knowing what treatment protocols are being followed by other patients with the same chronic disease and (in the case of cancer) the same staging as you. You could compare symptoms, medications, side-effects and other details deemed too sensitive to share. When I was being treated last year, I was desperate to hear about and from other patients with melanoma similar to mine. There is an on-line bulletin board for melanoma patients, but it’s not designed to parse health data. I hated not knowing how my treatment regimen, and my prospects for recovery, stacked up against others who had jumped through the same hoops I had. I want to be able to engage meaningfully with those providing my care, and knowing how others have responded to possibly better protocols would have helped to keep my doctors honest.

President Obama has pledged to make all medical records electronic within five years. Good luck with that, Mr. Healthcare Reform. The last major cottage industry in America (that would be healthcare) is yielding to the power of the chip, albeit at glacial speed. It may not save money initially, but digitization will save lives as patients discover ways in which they can, of their own volition, share data that can be crunched for insights on treatments and outcomes. I suspect that healthcare providers will be hard pressed to match the collective wisdom of on-line communities, which may serve to make them better at what they do. And, hopefully, force those who make bad choices to the sidelines.

As John Lennon might have sung, let's give power to the patient.