I found a recent Associated Press article on an aspect of the new health care law that many of us may have overlooked. It requires consumer-friendly summaries of what insurance plans cover, a provision that now seems to be at risk. The insurance industry is up in arms about implementation costs and added regulatory burdens. (There’s a good story at NPR, which includes a link to an example of what the language would look like.)

My initial thought was what a shame it would be to lose that provision. But then my mind flipped to the e-patient movement and how it’s teaching people to be active participants in our medical care. That means learning as much as we can about our conditions and treatment options and sometimes questioning our doctors’ recommendations.

It occurred to me that when we focus only on doctors, we’re missing a very sizable forest for the trees.  One of the overriding concerns of health care reform is getting costs under control. That’s made more difficult because no one knows what any of this stuff actually costs, including doctors. My plastic surgeon didn’t have a clue what the Alloderm he used in my reconstructive surgery cost. (In case you’re curious, it cost $22k three years ago. When I wrote a book about my experience with DCIS, I included a chapter on costs because I had never seen it discussed anywhere.) The health care law’s proposed consumer summaries would include ballpark cost estimates for normal childbirth, breast cancer treatment and diabetes management.

In our current system, the entities most focused on cost control are the insurance companies. This focus leads them to deny payment on claims. My oncologist told me denying claims has become so widespread he’s had to add at least two staff positions to focus on it. As far as I know, patients are largely silent and our doctors are fighting this battle on their own.

This is where I think the “i-patient” needs to step up: “i” for insurance-savvy. We should be demanding to know what insurance companies’ decisions are based on when they deny a claim. My oncologist told me one of his denials was based on the assessment of a general practitioner hired by the insurance company. Without the specialized knowledge of blood markers an oncologist has, this doctor didn’t realize that the normal marker used as a basis for denial wasn’t a good indicator. Where does that leave my oncologist and his decades of experience?  Like he told me, “Medicine is not like taking a car to a shop.” Patients need to know about this. When selecting an insurance company, we should know which ones have the worst record of denying claims.

We also should be keeping a close watch on electronic medical records, beyond simply demanding access to our own records. I recently read a fascinating post by Adam Sharp, MD, founder of par80 & Sermo, called “Why EMR is A Four-Letter Word to Most Doctors.” He explained how EMRs were largely a top-down effort, allowing third parties to implement policies by simply removing options from the EMR.  “If you can’t select a particular treatment option, for all intents and purposes, it doesn’t exist or the red tape to choose it is so painful that there is little incentive to fight the system.”

I found that chilling. Yes, we need to get health care costs under control. Yes, doctors should know what treatments cost and yes, they should weigh those costs against potential risks and benefits. But that should be their call. They went to medical school for a reason and it wasn’t to select pre-approved choices from a menu developed largely without their input. Reducing people to menu items ignores the endless variations and quirks of the human body. It also ignores a doctor’s own professional judgment based on years of training and experience.

We need an i-patient movement to make sure our voices are heard and our choices are preserved. We need to ensure those choices are made in partnership with our doctors, not handed down to both of us by some invisible third-party payer. We have a Society for Participatory Medicine (I’m a member); maybe it’s time we had a Society for Participatory Insurance. Because our doctors can’t fight this battle alone.

Jackie Fox is the author of From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer, and blogs at Dispatch From Second Base.

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