#3: Evil Medical Record Fairies

I have two questions today. I picked two because I don't really have a good answer to the first, so that one is going to be short and mostly BS. Here goes:

Dear Dr. Tumoriffic,

Why did my (former) HMO get rid of all the nurse practioners? (This happened at Kaiser; don't know if it is specific to them or an industry wide issue. All I know is my life was easier with the nurse practioners.

Sharon

Well, Sharon, this is question that doctors and patients have been asking for a long time. Starting about 20 years ago, gradually, nurse practitioners (NPs) began vanishing. Sometimes, they would vanish between patient visits, and, sometimes, even in front of patients. Witnesses talk of a whining sound as the NP appeared to blur and pixelate and then fade away. The more conspiracy-minded believe that they were abducted by aliens or even were aliens themselves. I suspect it was a more natural phenomenon akin to spontaneous combustion. But no one knows. *

Actually, I don't know why Kaiser got rid of its nurse practitioners. Someone certainly does, but this is not an investigative blog. My bet is that they found that they could hire physicians' assistants (PAs) to do the same work for less money.  They don't tend to be unionized, and nurses often are. But that's just my speculation.

Anyway, on to something I actually know about:

Dear Dr Tumorific,

How come you don't have my old doctor's lab results?

Jay

Dear Jay,

Your old doctor didn't like you very much and hid your lab results so you would suffer. We're like that sometimes.

Not really. It was Russian hackers.

Not really. The reason I can't look at your old doctor's labs is because they are hidden in the Kafkaesque funhouse that is the electronic medical record. There is enough craziness in it to write a million books, but I'll try to be brief.

Theoretically, it should be easy for me to see your old labs. Years ago, it made sense that we in medicine would finally join the digital revolution and put our records into computers. With the computerized charts, information would be easily organized and retrieved. Instead of lugging a paper chart or a photocopy of one from place to place, you could just give your permission to a new doctor anywhere in the country. With the push of the button, they could see your whole history, look at your blood tests, x-rays and MRIs, etc, and see the thoughts of other doctors. Medication lists could be accessed so that any one of your doctors could see what any other of your doctors prescribed and every allergic reaction you ever had to drugs. Pharmacies could automatically know when a doctor wanted to terminate a prescription or what prescriptions other pharmacies filled.

The potential for increased safety was enormous. Imagine how many deadly medication interactions could be prevented and how much more quickly care could progress when doctors across different systems could act as a team. And the potential cost-savings were huge. Imagine how many diagnostic workups would not have to be duplicated.

But it was not to be. The evil medical record fairy took this beautiful dream and turned it into a nightmare.

As a patient, I have lived this nightmare. While I live in Boston, my childhood cancer care was done in Baltimore, and much of my adult cancer care has been done in New York. It would have made perfect sense if my New York doctors could have looked at my radiology results from Boston the instant they were done and vice versa. Instead, after radiology studies, K or I would have to go the radiology library in the hospital basement and sign some form so that they would make a CD-ROM and send it to the other system, or, because this was often unreliable, wait for them to make the disk and carry it by hand.

Similarly, I would have to sign forms to have medical records photocopied and mailed up and down the East Coast or carry them myself. I wish I could say that this got better between my big tumor in 2005 and my latest crisis in 2016. It didn't.  We're still in the digital dark ages.

There are reasons why this is so.

First, there are the medical record software companies. If different medical record programs could talk to each other, practices and hospitals would have less incentive to stick with the systems they have. The cost and time associated with transferring all the data from one system to another is prohibitive and fraught with error. Healthcare systems will stick with whatever system they have for a long time no matter what its weaknesses.

Then, there are the large healthcare corporations and hospital networks. Duplicating expensive medical workups may create increased costs for society, but they are big money for the entities that do them. If I had your old labs, I would not be compelled to repeat them.

Meanwhile, those same hospital networks and healthcare corporations make more money if they can keep everything in-house. Having immediate digital access to all new information creates a strong incentive for your doctor not to send you to outside experts.

And, even where communication between software systems should be easy, it is not. Even using the same program, electronic health records in different medical systems do not talk directly to each other. For a fee, one system can access the health records of another, but they don't meld the data, so I still have to know to look in the right place, and the data available are often limited. For instance, I haven't heard of any system that allows docs in a different system to look directly at their MRIs.

It's all a bit nauseating, but medicine in this country is business, and safe, efficient patient care is sometimes not good for business.

And, that, Jay (in a highly abbreviated form), is why your new doctor doesn't have the labs your old doctor did.

As an individual patient, you can't fix the system but you can make it a little better for yourself. You can sign forms to have your medical records copied and sent to wherever you want. I have often found that to be slow with my own records. I try to have copies of the doctors' notes, labs, and radiology studies with me so that i can hand them to a new doctor. Then, I can be absolutely sure they have them and can access them when I need them to. **

Be well,

Dr. Tumoriffic

PS: A lot of this is tied to really dumb government regulations, but that is a topic for another rant.

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* The last nurse practitioner in the world actually works in the office next to mine. Her name is Maria. She always brings good food to work and shares it.

** Try to limit your record-copying to the providers' notes, the labs, and the test/radiology interpretations. There is an enormous amount of irrelevant billing nonsense in the medical record that I do not need to see.

This lion is fed up with bad electronic medical record software: