If you want to change a culture, start with its children

My kids are brilliant. If you don't believe me, just ask my wife.

-- Anonymous

Well, they are. Let me give you an example. Weekend before last, my youngest daughter (9) woke up on Saturday morning with an earache. I heard her crying in the living room and went to see what the problem was. She told me it felt like someone put a bowling ball in her ear. She had been swimming the day before and couldn't get all the water out, so I was pretty sure she had an ear infection. I called the pediatrician, but they don't open until 9:00 am on Saturday, so I called my practice's urgent care center, and they opened at 8:00am. Since it was about a 40 minute drive, I gave her some ibuprofin to help with the pain, and off we went.

To make the ride easier for her, I engaged her in conversation. She wanted to know what was going to happen at the office, and I explained how it worked. You didn't need to make an appointment, you just showed up. They would take her history, and the doctor would take her vital signs, record them in the EMR (she knows what that is because it is what daddy does), and then look at her ear, and probably prescribe some antibiotic and maybe some ear-drops to help with the pain. Then I told her that since her doctor is a "Meaningful User" of HIT, she could get a print-out of her record. Next I explained that everyone has a right to get a copy of there medical records, and that by law, in most cases, the doctor or the hospital has to give them to her (or in her case, her parents). And then I explained that since her doctor was already in Meaningful Use, she would not have to wait a long time to get them.

"We can ask them for the record, do you want it?" I asked her. "Yes, I want it." She told me. "When we're done, you can look at it. And if there is anything wrong with it, you can tell them to fix it. They have to respond to you, and tell you at least if they are going to or not." I told her. "It's the law. There is this thing called HIPAA (not HIPPOs), that makes sure you can do that." "OK." She said.

By the time the visit started, her ear only felt like it had a baseball in it (or so she reported). And during the visit, I asked the doctor if he could print out her record for her. He said he would as soon as he finished writing it up. He then dug out his iPhone and started calculating her dose. I asked him what app he was using for that. He told me, and I laughed, and said, I have that same app on my iPad. "Are you a practioner?" He asked. No, just a healthcare IT geek with an iPad I said. He computed her dose, order the antibiotics, and we talked about whether he should prescribe ear-drops for pain management. "Given that she woke up crying," I said, "let's go ahead and do that."

So he placed that order too. He then handed me a printed set of patient instructions regarding her treatment that described her problem and how it was being treated, and what we should do if it didn't work. He came back a few moments later with the completed visit report and hand it to her (not me -- which was the whole point for me). We left to go to the pharmacy to pick up her meds.

On the way there, she read through her record. She asked me questions about what stuff meant. When we got to the vital signs section, she said: "Daddy, it says here that they took the Oxygen off my right hand, but they used my left." So, I told her that she was good to spot that and that she needed to write them a letter to tell them about the mistake. I figured that this was a great way to drive home the lesson.

When we got to the pharmacy, we had to go through the "Insurance Card" rigamarole because I gave her nickname rather than her legal name to the doctor, and they didn't have her on file (or so they thought). We fixed that. Then the pharmacist told me that the insurance was going to cover the anitbiotics, but not the ear-drops. "OK, thats fine," curious, but not interested in battling with the pharmacist. He then went to fetch an "Ear-wax removal kit". I looked at it and said, "No, that's wrong." I asked my daughter to run out to the car to get her records. She ran out and back, and we showed the pharmacist what the doctor's records had said. Then he showed me the e-prescription that they recieved. There was a mismatch. The drug listed in her chart was "Ear Drops (some chemical name with percentage in solution)", but what was on the printed version of what had been recieved via the ePrescription message just ended before the parenthetical clarification, just: Ear Drops.

So my daughter learned that having her records helped with stuff like that, too.

Then I called the office, to tell them about the mixup, but they apparently don't have a procedure to deal with that kind of error report. I know who to talk to there, so I'll fix that later.

Last Sunday, while I was reading, I heard my daughter working out the letter with her mother that she is going to send to the place that saw her. I'm going to write one too and send it with her letter. We'll address it to the HIPAA compliance officer, so that I know it will get the appropriate attention.

My daughter won't forget this lesson, and she's learned something exceedingly valuable that will help her when she is responsible for her own healthcare, something that not many people are really aware of. Last Saturday, I got to spend an hour with @Lygeia and several other patient advocates at Health Foo. We talked about how to get patient engagement. I recalled parts of this story to the group, and pointed out that by the time a person leaves high school, they are able to balance a check-book and write a resume, but they are not at all trained to deal with doctors, choose an insurance policy, or manage their own interactions with the healthcare system. These are necessary life skills that we need to teach our children. Because if you want a society to change, you need to start with its children. So, you might think that its funny that ONC is going to use cartoons to teach Health IT, but I really don't. I think its brilliant, just like my daughter.

-- Keith

---

Update: Not to be outdone by her sister, my eldest went to the pediatrician's this morning. Diagnosed with Swimmer's ear and Otis Media. She's picking up an electronic copy of her records mid-week on disk! When asked why she wants them, "I wanna be an e-patient!" she said to them. I think we need to declare a week for e-pediatric patients.