The Black Box of the Patient Experience

Got back last weekend from a whirlwind trip, beginning with a talk by hot-spotting doctor Jeffrey Brenner (featured in the New Yorker) at Penn, followed by hopping on a bus to attend Unite for Sight’s Global Health and Innovation Conference at Yale. The experience gave me a lot of thoughts to write about, and (as you can tell) I’m already behind on writing them, but I’d like to begin with a blurb about the patient experience.

The patient experience, which—judging from the themes I heard this past weekend, and from my own experiences—remains a big black box for many health program managers and even doctors.

Dr. Brenner talked about a diabetic patient in his network who, despite doctors’ repeated (and increasingly frustrated) attempts, could never seem to control his blood sugar. He insisted he was sticking to the prescribed regimen of insulin shots, but the tests (and repeated visits to the emergency room) said otherwise. “Noncompliance,” doctors would conclude dismissively (or, more politely, “non-adherence”). Until Dr. Brenner and a social worker decided to visit this patient in his home.

Where they observed him religiously take out in insulin need, put it into the bottle to draw out the medication, and proceed to give himself 50 cc’s of air. This patient had vision problems, and did not realize that the need was not fully submerged in the insulin.

It was striking to me to hear a similar experience relayed at Yale by a doctor from Partners in Health, but this time not from the streets of Camden, but from the villages of Rwanda. A rheumatic heart disease patient was not managing the condition well, despite being given the necessary medications. A community health worker finally visited the patient in his home, where he learned that the patient was following what he thought to be the doctor’s orders: take the big pill when it’s hot, and take the small pill when it’s cold.

I believe that these two strikingly similar stories represent more than isolated cases. Rather, I think they reveal a failure of the monitoring system, and an inability to reach out and understand the patient experience. Reflecting on my own experiences in China, I realized that no one—not the charity organizations, not researchers in Guangzhou, certainly not myself, and not even the doctors at the county hospital one level up from the village—fully understood the patient experience in deciding whether or not to accept cataract surgery. We have theories and scattered evidence based on imperfect surveys, but if we truly understood it, coming up with effective interventions wouldn’t be so hard.

It’s all a black box to us.

As we move forward, and payment system reforms force us to look beyond the four walls of the hospital or clinic to the pre-admission and post-discharge status of patients, we will need to develop stronger monitoring systems. Task-shifting to non-physician health care workers (and community health workers in developing countries, here’ a shout-out to an organization working on this issue that had some great presentations at the conference) will become crucial to this effort, given the short supply and limited time constraints of doctors.

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