Posts about health

In control of health

After I wrote the chapter in my book on Googlified insurance — thanks to the wisdom of the crowd in the comments here — I tried out the ideas on a couple of insurance executives. “You may be mad,” one of them emailed later, “but you had some good ideas.” Actually, my readers did.

I proposed a scenario in which the community of the insured gained responsibility for its own health, which would require insurance and medical companies to hand over control to them, to be fully transparent with data and information, and to provide services the community could use to improve its health and reduce its own costs.

Let me play out two implications of this with my own health situation. First, a case of cutting costs:

Because of my afib, I have to take Coumadin, a blood thinner. I am required to go to the medical group every 2-4 weeks for them to prick my finger and make sure the dosage is OK. In some people, it can be variable and volatile. Not in me. I’ve been on the same dosage with the same effect since I started. But they keep bugging me to come in. They yell at me.

When I get there, I’m offended at the waste of money. There’s a nurse who sits at a computer and judges my results and then types and types and prints out a sheet. There’s an assistant who does nothing but prick my finger and then marks up that printout. It takes them two people to do what my diabetic mother does many times a day on her own. They charge me a $20 copay each time I do this. I shudder to think what they charge the insurance company. It’s like watching a government bureaucracy in white coats.

My point: If my interests and those of my community and insurance company were aligned, I would put up a fuss and whistleblow this boondoggle. If I knew it could have an impact on my costs, I’d report this to the insurance company. If I knew my community had the power to do something about it, I’d tell my tale in a community forum and gather critical mass around imposing efficiency.

But my interests are not aligned with the insurance company’s. They are out to screw me. They think I’m out to screw them. The doctors who are screwing us think we’re all screwing them.

By the insurance company holding onto the power in this relationship, it screws itself. We have no interest in helping them. If, instead, they enabled the community and each of its members to take control of health and costs, if they acted as a true service to the community’s and its members’ needs, then they all would benefit — except perhaps for the unnecessary and now jobless assistant and the doctors who can no longer skim a profit on this scam.

Second example: I’m tussling with my cardiologist about the dosage of the drug I take that stops my fibrillation (the poetically named Rythmol). I’m on a high dosage but it’s working well (knock wood). The doctor says he wants me on a lower dosage, but the last time I tried I nearly went into afib and had too many palpitations (and I couldn’t concentrate under the pressure to get my book written). The risk of the drug is that even as it stops afib, it can cause afib. The risk of not taking the high dosage is that I can go into afib — and the more you get afib, the more afib you’re going to get. The risk, either way, is getting more cumulative bouts of afib. I’ve already had enough to make me a life-insurance risk, which is to say that the condition was not sufficiently managed early on when I got it (after 9/11/2001) and before I went on Rythmol.

[Note, as an aside, that my life insurance company is screwing me for a condition that I got from 9/11 and it's a company run by and for military people. I wonder how they treat Iraq veterans. More on that another day.]

There’s a health decision to be made here. It’s about balancing risks. The only way to make that decision is to look at as much clinical data as is available and judge that against the comparative risks and against my personal experience. The doctor will come to a conclusion based on his education and reading and a few minutes’ consideration in my case.

But the decision is properly mine. My health should be under my control. It is ultimately my responsibility. But the system is not set up for me to make that decision. It is not set up to inform me or give me control.

At Davos last year, I sat at a table with a bunch of doctors who complained about their patients going to the internet to get what they said was misinformation. They didn’t want the internet to get in the way. They wanted to remain in control. I told them they were looking at this the wrong way. Instead, I said, they should point their patients to what they though were the best resources.

Doctors, I said, should act as curators of information for patients. That’s not what doctors do. They don’t have the means or, they’d argue, the time. Insurance companies offer some information to patients, but it’s lite and not too valuable. (Did you know you should eat less? Not smoke? Exercise? No, really?)

If insurance companies and doctors tried to empower patients and their communities to take control of their health and the costs surrounding them, if they gave us information about both the medicine and the business of it, they might succeed. Right now, no one does.

Really public health

I signed up for Google Health and immediately found it handy with news about each of my conditions. My wife wondered why anyone would use it and risk health data becoming public.

But my life is already an open blog and I’ve already talked about most of my conditions — mainly atrial fibrilation — and received benefit for it: support, links, resources, others’ experiences.

So why not talk publicly about our health? Fear. We fear losing a job or not getting insurance or, with certain conditions, being stigmatized. That is what we should address. With universal insurance and laws to prevent discrimination on health, we’d have no need to fear. Stigma, I can’t do much about.

There are other benefits accruing if we talk publicly. The more we share experience and create data, the more doctors can learn about our conditions and perhaps what causes them. The more we support each other, the more helpful it is for each of us (see Patients Like Me).

Do I trust Google with my health information? Do I trust you? The key is to make sure that I have control over my data. Just as with Facebook, control is the issue.

: Just as I finished writing this, I see that Fred Wilson agrees. Note that his father and I have shared our afib experience and I found it very helpful.