Four and a half

I was babysitting Saturday night for an adorable four and a half year old, the half is important because she reminded me she was four and a half a half dozen times. We were eating pizza and she noticed me take out my pump to give insulin for my meal.

“What’s that?”

It was an innocent question. But how do you explain type 1 diabetes and an insulin pump to a four year old? I haven’t spent much time around young kids lately, how much would she actually comprehend?

“This is a machine that gives me medicine.”

“Why do you need medicine?”

“I have something called diabetes. There’s part of my body that doesn’t work anymore, so I need to give myself this medicine.”

She thought about this for awhile.

“Will I need that?”

“Hopefully not. Your body doesn’t need it, everything is working and doing it’s job.”

“My mommy doesn’t have that.”

“Nope. She doesn’t need it either.”

“Do you always have it?”

“Yup, it’s always with me.”

And that was the end of that. She seemed satisfied with my explanation and moved on to trying to teach me how to play chess (with a few questionable new rules).

In that moment I couldn’t help but think about all the four year olds out there whose understanding of type 1 diabetes is so much more complex because unfortunately they’re living with it. I was 12 when I was diagnosed, I never had to experience diabetes at such a young age. Such little people living with such a big, burdensome disease.

I hope the future is filled with way more naive, innocent 4 year olds who will never have to know what it’s like to live with type 1 diabetes.

 

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The Patient Experience

I work for a global healthcare leader. A couple weeks ago we had our company conference. While listening to the various speakers within the different business segments of the company, one theme became very prevalent. Leaders in pharmaceuticals, medical devices, and consumer healthcare, all kept emphasizing the same topic: the patient experience. Speeches were littered with phrases like, “patient-centered”, the “patient journey”, “putting the patient first”. As a public health professional and as a chronic disease patient myself, I was happy to see the clear focus shifting towards the patient.

But then I stopped to think about what this really means. As a type 1 diabetes patient, what does patient-centered care really look like?

To start, I can tell you what it does not look like. A few days ago, I received this letter from my health insurance company. At the top of the letter it read, “Talk to your doctor about this important issue. It may improve your health.” Intrigued, I kept reading. The letter explained that they had basically reviewed my health records and wanted to bring a potential health problem to my attention so that I may speak to my doctor about it. The health topic was on the back of the letter. Since my various doctors have already tested and reviewed my blood work, I was curious what health issue they may have missed. I turned over the letter.

The first line on the back said, “Our data shows that you may have diabetes.” The paragraph went on to explain the importance of checking for protein in the urine as a sign of kidney damage if you have diabetes. It’s not the letter itself that annoys me. I actually think it’s great that the health insurance company is sending reminders or health information to patients to bring up with their doctor. It’s the fact that the first line says, that I may have diabetes. Guess what? I do. And I have for the past 14 years. Honestly I find this letter off-putting and probably has the opposite effect than intended. I expect that my health insurance would know that I have diabetes, they see the diagnosis codes for all my doctor’s appointments, they aren’t making a leap to say that I have it. Telling me that I may have diabetes basically says that you don’t know me at all. It’s the opposite of patient-centered. It’s communicating that I’m just another medical record that a computer scanned and looked for key words or results to send a form letter.

If they had just changed the top line, I would have reacted completely different to the letter. They should have instead said, “Reva, since you have type 1 diabetes, here is some information that you may want to bring up with your doctor at your next visit.” This would have instilled confidence that my health insurance company actually knows my health condition, it would have felt more personal, and I would have reacted overall more positively to the actual information rather than getting caught up in the first line.

My “patient experience” doesn’t just happen in my endocrinologist’s office 4 times a year, it’s tied up in everything that is communicated to me and that I do day-to-day. It’s in letters like this one. It’s in all the moments between doctor’s appointments. It’s in the way that the doctor speaks to me and even in their particular word choices when talking about my diabetes. It’s in the waiting room or exam room when I’m waiting 30 minutes to talk to the doctor for less than 15. It’s in my conversations with customer service about my pump or CGM. It’s in my multiple phone calls with my mail order pharmacy when they screw up my insulin prescription or the countless inconveniences of getting my a1c test done. My patient experience involves the lack of integration and communication between doctors and health care systems and even medical devices.

I applaud the shift and emphasis on the patient experience. It’s about time. When a patient truly feels at the center of their care, that their time and efforts are acknowledged and respected, when their obstacles are recognized and addressed, I think there is huge potential for helping patients live longer and healthier lives. I’m glad to see that we’ve taken the first steps of a long, but necessary journey.