This morning, when I woke up, I called a good friend and colleague to find out about a project we are working on. Before I could even broach the subject, she told me she’d just had a terrible morning. Why, I asked. She’d just gone to see her gynecologist and went in an hour early for her appointment to get some blood work done. The secretary told her to come in at 8 am to do the blood draw. She dutifully arrived only to be told that, in fact, the person who does the blood draws only comes in at nine. Glitch number one.
But that was okay, she was told, because the health care system was updating its computers and introducing all sorts of electronic wizardry (healthcare information technology (HIT) — the kind the Patient Protection and Affordable Care Act (PPACA) has supported and which promises to protect patients from all manner of frightening medical errors and injuries. Because she was early for her appointment with the doctor, she could take the time to fill out a bunch of forms that would provide critical information that would be entered into the computer and would help physicians and nurses etc make better judgments. (Obviously, I added the nurses here because no one in health care would ever talk about anyone on the team other than physicians). Fine, my colleague thought, I’ll be glad to fill out all your forms.
A smart, very literate, upper middle class woman in her sixties, my friend devotedly began reading the forms and trying to enter the correct information, and that’s where the trouble began. First, she said, they asked her how many sexual partners she had had. She was incensed. “Shouldn’t this be a question your doctor asks you? And anyway, who can remember? I put down many.”
Next they asked her about family history. Did anyone in her family use alcohol. “Use?” she asked, “What do they mean by that. Do they mean abuse? How do I answer that question. My father was an alcoholic. My brother had problems with alcohol but stopped drinking. My other brother drinks a glass of wine on the weekend. So what does ‘use alcohol mean exactly in this context?” My colleague told me there was only a tiny space, an inch by an eighth of inch precisely, in which to make any further notations on the health issue in question. When it came to her own alcohol use, she was equally stymied. How, she wondered, does she explain that she used to drink a lot, stopped drinking so much, except at weddings, when she occassionally got bombed, and now has stopped drinking at all because she’s trying to lose weight.
“All of these health issues and our behaviors are dynamic,” she astutely commented.” We read that you shouldn’t microwave with plastic and so you don’t. You discover that if you weigh 160 pounds, you’re now at the edge of obesity, so you go on a diet. You aren’t supposed to eat eggs or butter, so you don’t. Then they tell you it’s actually good for you to eat eggs and some butter, so you do. How does that fit in an inch by an eighth of an inch?”
As she dutifully proceeded with her family history, she was again stymied by the questions. Did any family members have headaches. Well, yes maybe. Her mother had a really bad headache when she had a brain tumor. Did they have skin problems? Her mother had some in her 90′s and her brother had psoriasis. Is that a yes? I guess, she said. Did any of her grandparents have rectal bleeding? Her paternal ones died thirty years before she was born, so how did she know? “If I don’t check the box, does that mean they didn’t? Maybe they did. I don’t f…..ing know.” She was getting pretty frustrated by now.
Things were no better when it came to questions about her own health. “They want to know if I have bladder or urine incontinence. What the hell is the difference? Did I smoke and how much? Well thirty years ago, I smoked a lot. But sometimes it was two packs a day and sometimes nothing. There was no room to make those distinctions. Amazingly, they didn’t ask whether I’d had hormone replacement therapy, which I did. You’d think someone would want to know about that,wouldn’t you? As for exercise, they want to know yes or no, and kind and frequency. Well I bike eight miles, walk for thirty minutes, use weights etc. There is no room to detail all of this. The whole thing is ridiculous.”
What was the most unnerving for my colleague was the idea that decisions about her healthcare would be made on the basis of someone — god knows who — interpreting the answers to these questions. “When you talk to your doctor, you give him all this information and he or she knows what to look for — hopefully — and can make some kind of sense of it all. They can ask more questions, they can learn something about you. This….This was a joke. And I really tried to figure it all out. Imagine what most people would do with this.”
Maybe somebody in Washington is listening. Maybe someone will read this and rethink all this magic silver bullet stuff. In my new book, First Do Less Harm: Confronting the Inconvenient Problems in Patient Safety co-edited with Ross Koppel a world renowned specialist in HIT, Koppel and other raise many of the problems that HIT brings with it. My colleague’s final word on all this? “Why don’t they just sit down with us and ask us what they want to know and then let us really tell them? Oh, and by the way, after sitting and trying to fill out this form, it turned out my doctor couldn’t make the appointment because she was in the hospital delivering a baby. I asked them if I could get my co-pay back but they couldn’t figure out how to get the computer to do that.”