Free at last--from pain--guest blogger

A former colleague of mine comments on my comments on Dr. Blumenthal's 2 part series on HITECH which appeared in December in the New England Journal of Medicine. I was concerned about a number of issues, including the rush to push it through and the shaky privacy issues, but here's an alternate view of how advances in digitized health records mandated by PPACA could benefit the patient. She is now pain free after surgery and it has given her back her life, but some of her experiences in getting there were extremely unpleasant.

I thought this was an excellent article evaluating the benefits and challenges of bringing one part of American health care into the 21st century. I recommend we all read the full Blumenthal article. It's short and accessible. I took away something very different from it. It left me hopeful that things might change for the better.

Although we all rightly are concerned with the privacy of our health care data, as the article mentions, paper data is not secure either. But online data does present more challenges because no system is un-hackable. However, that's not a good excuse to stay in the 19th century forever.

My doctor's office automated their records and system a few years ago, making him an early adopter. There was slow down in the first 6 weeks, they told me, but then it got VERY efficient. When I go in now, it is faster, he knows exactly which tests are due and he prints out any prescriptions right from his laptop or faxes it directly to the pharmacy. He spends time talking to me, not flipping through paper files looking for previous test results, which are all on his laptop. I love it. He does too. After the initial few weeks of learning the new system, everyone in his office is fluent in it and very efficient.

None of these systems are developed from scratch in each doctor's office. They are turnkey systems with training provided. So the analogy of creating LCS from scratch isn't comparable.

Here's my example of why I think a state-of-the-art health care information system is desirable. Before my second hip surgery, I was in a wheelchair and in excruciating pain. I realized I couldn't keep working unless I got "real" painkillers. So I was referred to an OSU-affiliated pain clinic.

The biggest fear that pain clinics have is that patients will game the system, get painkillers from multiple doctors and sell them on the black market. This does happen. But I didn't realize that this fear made some pain clinics abuse their patients.

The waiting room was NOT filled with 20-somethings in black leather strung out on illegal drugs. It was filled with about 30 moaning elderly middle-class men and women, some in wheelchairs, some with canes or walkers, most were accompanied by worried relatives. One women was in such pain, she passed out during the wait. The office staff wouldn't help her. She said: "They do that to get sympathy so we'll give them drugs."

Her husband, who was almost shouting, had to be calmed down by other patients and we all demanded someone come out and help her into the bathroom to put cold water on her face, since not of us was strong enough to help her out of her wheelchair. They begrudgingly helped this "potential" drug abuser.

When it was my turn to be seen, the questions the doctor asked had to do with whether I was being seen by another doctor and if I was getting drugs from them too. If it had been said for my benefit to make sure I didn't overdose on a combination of things, it would have been appropriate. But it wasn't. It was an interrogation that implied I was a drug addict trying to cheat the system. I had never been treated so nastily by a doctor and I was really surprised. But pain clinics act this way because there is NO WAY TO CHECK RECORDS TO SEE IF OTHER DOCTORS are also handing out prescriptions. Finally, the doctor said he'd give me a prescription, if I passed the drug test, which was required of everyone.

So I went to the drug testing clinic he mandated. I had to be there in 20 minutes (or it was invalid), so I wouldn't have time to get a "clean" sample elsewhere. If you've never had a drug test (some states want all welfare recipients to pay for one themselves, before they can sign up for benefits), it isn't as easy as you might think.

A same-sex attendant accompanies you into a bathroom and watches you. You pee in a cup while someone watches your hands to make sure you don't substitute another sample. It was not handicap-friendly. The commode was on a platform in a small room with nothing I could hold on to easily. Because of my hips, it was excruciatingly painful. It was humiliating. I thought of the women in their 70s and 80s in the waiting room of the clinic who had to do this. It made me angry at our backward system.

The clinic said the test was a nominal cost, like $30. (Just like states say the charge will be nominal for welfare recipients, who must pay for the drug test themselves.) Turns out it was $250. I refused to pay that much and after weeks of arguing over paperwork, the price was changed.

Had there been a centralized health information system in place, this entire traumatic episode would not have been necessary. The pain clinic could have pulled up my x-rays, seen the bone-on-bone hips, seen I had no other prescriptions, and prescribed an appropriate painkiller. Instead, they were ruled by fear and lack of information. The prescription they gave me was inadequate; the surgeon said he didn't know how I managed the pain with only what the clinic prescribed me.

I, and all those suffering people, would have gotten better, cheaper, less humiliating care. The people who REALLY are gaming the system might be caught faster and punished. The insurance companies and we might have saved a small amount of time and money, but multiplied by millions of people resulted in huge savings, if there had been an investment by the government to create a unified medical information infrastructure.

I'm afraid of abuse of medical information. But that won't keep me from wanting to have a modern medical information system to allow better care, better tracing of public health concerns (like food poisonings from unknown sources), better tracking of outcomes using different types of procedures, and brings us closer to the care provided by other industrialized nations.

Do you know where you should move if you are a Type 1 diabetic? FRANCE. Because they have proven the slower speed of their dialysis treatment provides better patient outcomes and longer life. U.S. hospitals don't have a system to track outcomes, unless they do a special (costly) research study, because we don't have any medical information infrastructure. So we do what the insurance companies will pay for, which is the faster version, which results in more deaths for US diabetics than in other industrialized countries overall.

I went to my doctor years ago with what could have been either food poisoning (after eating at a new restaurant) or a flu bug. I asked him if other people in the area were coming in with similar symptoms, in case it was food poisoning. His answer: we don't have any way of knowing. They would have gone to different doctors and no information is shared. How's that for public health? We have to wait for multiple people to die to find out if there is a public health issue in an area, because deaths are reported.

I know I'm not going to convince anyone who, like the clinic doctor, is guided primarily by fear of abuse. But I believe shared medical information is vital to us as a country and as individuals. Everything can be abused. That clinic was so afraid of abuse that they were abusing people in a different way, by treating everyone as a criminal. They provided expensive, inadequate care. They had no way to track the outcome of the treatments they prescribed or even if their patients lived or died.

The only follow-up I ever received from the pain clinic was a post card a few years later saying they moved to a new address. We deserve better health care than this.

This is certainly an eye-opener, however, if patients can be abused in such a manner with face to face, 21st century care, I can hardly see EHR improving on that!