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Unpaid, stressed, and confused: patients are the health care system's free labor

I have spent the past year of my life managing a chronic foot injury. My left foot started hurting after a run last May, and, well, it never really stopped.

At best, the injury lies dormant for a few weeks, barely bothering me. At worst, it can cause intense pain to walk my dog down the block. So I've spent the past year in doctors' offices, in MRI scanners, and in late-night Google search sessions trying to understand what went wrong and how to fix it.

I write a lot about health care for my job here at Vox, and have spent the past seven years covering and explaining the American health care system. But there was something I didn't understand about American health care until this experience.

It is the considerable burden our fragmented system puts on patients to coordinate their own care.

"Every three months, I just know I'm going to lose a few days of my life"

I'm not talking about the work of managing one's health, the work that diabetics do to monitor their blood sugar or the healthy eating choices a doctor might recommend for an overweight patient. This can be a significant burden in its own right.

What I didn't understand was the burden patients face in managing the health care system: a massive web of doctors, insurers, pharmacies, and other siloed actors that seem intent on not talking with one another. That unenviable task gets left to the patient, the secret glue that holds the system together.

For me, this feels like a part-time job where the pay is lousy, the hours inconvenient, and the stakes incredibly high. It's up to me to ferry medical records between different providers, to track down a pharmacy that can fill my prescription, and to talk to my insurance when a treatment gets denied to find out why.

I'm not alone.

"Every three months, I just know I'm going to lose a few days of my life," says Aaron Carroll. He's a pediatrician at Indiana University who directs the medical school's Center for Health Policy and Professionalism Research, and who also writes about health care at the New York Times's Upshot.

Carroll has a condition called ulcerative colitis. Every three months, he has to refill his medications — and every time, it requires him to be the middleman between his doctor and his pharmacy.

"Basically I call the pharmacy, and tell them I'm out of medication," he says. "And sometimes they'll call my doctor for a prescription, and sometimes they won't. So I call the doctor's office to say, 'Hey, I'm out of meds, either the pharmacy will call you or you need to call them.'"

Carroll told me he almost always runs out of his medication early and ends up rationing pills because something goes wrong — a lab test goes missing, a prescription doesn't get transferred. And he's a physician. What about the rest of us?

The American medical system is expensive; that's no surprise. That medicine can be costly is no shock to pretty much anyone who has visited a doctor.

But American medicine demands another scarce resource from patients, and that is their time. The time it takes to check in on the status of a prescription, to wait for a doctor, to take time away from work to sit on hold and hope that, at some point, someone will pick up the phone.

"There is significant work involved in being a patient," says Victor Montori, a doctor at the Mayo Clinic whose research focuses on the work health care assigns patients. "But there isn't any chapter of any textbook, no class in medical school, no theoretical framework we've been able to identify that will help nurses and doctors understand this."

Montori has a term for my part-time job: the "health care foot print." It is a "major blind spot of medicine," he says — and right now I'm stuck in it.

My stressful quest to get a prescription filled

Here's a story about what happened the last time I needed to fill a prescription.

The doctor handed me the prescription on a purple slip. It was for a topical anti-inflammatory medication that my doctor hoped would fix my problem by reducing swelling in a joint.

I wanted to fill it promptly because my doctor said I'd need to bring the medicine with me to my first physical therapy appointment — the sooner I could get the medication, the sooner I could start treatment and (fingers crossed) the sooner I could return to running.

I biked to the nearest pharmacy, a large CVS. A technician there informed me that that branch didn't carry this medication. I tried a larger CVS a mile away; no luck. I was late to dinner.

I cried because I was trying my best, and I really wanted to run again, but I felt like the health care system had bested me

I woke up the next morning. I called Walgreens, which did not carry the medication. I checked my insurance plan online, where I learned that they don't cover this medication so I couldn't use the mail-order pharmacy.

I emailed my doctor's medical assistant at 8:28 am to ask what I should do. I searched for the medication online; the one place that appeared willing to sell it to me was an equine pharmacy in Iowa. I did not need a horse-size dosage.

I sat at my kitchen table crying out of frustration. I cried because I was trying my best, and I really wanted to run again, but I felt like the health care system had bested me. I cried because nobody else — not my doctors, not the pharmacists — really seemed to care.

It was 9:14 am, and I was late to work.

I got an email from a medical assistant in my doctor's office at 5:05 pm. The doctor never should have given me the prescription in the first place. The medication I needed would have to be ordered by their office through a specialty pharmacy. I should expect to hear from them in a few days.

"I'm sorry this was not explained at the appointment," the email said.

But then I got another email, from a different medical assistant. She didn't mention anything about the specialty pharmacy but asked if I wanted help filling the prescription. I sent her two emails back. She never responded.

The issue was resolved three days later when I got a call from the specialty pharmacy, asking where to ship the medication.

On its own, this is a relatively small inconvenience. Just writing out the details feels silly, almost self-indulgent.

At the same time, it took about an hour out of my workday. When I didn't know how I'd get the medication, I was stressed and unable to focus. I felt like nobody else really cared about whether I got the prescribed treatment.

The risk of ignoring patient work: People might give up on managing their care

Montori, the Mayo Clinic doctor, began studying the work of being a patient in 2009. He started by looking for good research on the subject, like a study of how much time patients spend managing their own care.

It didn't exist.

"There are only a handful of studies, and they're all very low-quality," he says. "It's just a not something that gets a lot attention."

One of the catchphrases that you hear a lot in health care right now is "patient-centered" care. The Affordable Care Act put significant investment into promoting something called "patient-centered medical homes." You can think of these as a patient's home base in the health care system — a place where primary care doctors, social workers, nurses, and pharmacists all work together as a team to manage their patients' care.

The health providers at patient-centered medical homes are supposed to work together to address all of a patient's medical needs. Instead of a patient meeting with a nutritionist, and then a doctor, and then going to a pharmacist to get pills — all independent of one another — a patient-centered medical home would mandate that these providers meet and talk with each other about the total sum of care, not the one sliver they happen to manage.

Just the name sounds pleasing: care that centers on getting patients healthier. And some of these experiments have shown promising results using a team of doctors, nurses, and social workers to improve health outcomes.

Montori thinks the general philosophy of this model makes sense; different health providers really should be working together more closely to manage their shared patients' care.

At the same time, he worries that there is something very un–patient centered about it. The metrics used to evaluate whether these systems work usually have to do with the patients' health — what percentage, for example, are getting breast cancer screenings on time or how many diabetics have their blood sugar levels under control.

None of the quality metrics, Montori pointed out, take the patients' work into account. There's nothing that measures how long patients had to work to schedule their screening or how hard it was for a diabetic to fill her prescriptions.

"We, as clinicians and engineers, need to become obsessed with how we provide the best outcomes for patients while having the smallest possible footprints on their lives"

"They have the right idea, about working together," says Montori. "But the execution has become very much about checking boxes — are we hitting patient goals? They're not capturing anything about individuals' own work. There are no quality measures in any quality dashboard we use right now that captures that phenomena."

That's a problem: Patients have lives outside of their doctors' offices. They have jobs to do and children to take care of. I'm lucky that my job comes with flexible hours. I can shoot off emails to my doctor's office and wait on hold, at my desk, without fear of getting fired. Last Thursday I spent 90 minutes waiting to see my doctor, right in the middle of a workday, and my boss didn't bat an eye.

Not everyone has this luxury. Some have to make a choice between doing their actual work (which pays the bills) and their patient work (which doesn't). In those cases, prescribing health care with a high patient work burden can be equivalent to denying health care. Medication won't do much to help a condition when you don't have the time to make the phones calls necessary to track it down.

There is a risk associated with not measuring patient work: namely, that patients will give up when life gets in the way. This is an especially acute worry for lower-income patients, who often work for hourly wages and have little space to change their schedules.

"When family issues become more urgent, when you need to travel, when your parents get sick, your priorities change," Montori says. "Life becomes more meaningful than all the work you need to do to take care of your diabetes."

Montori is about to begin a pilot program in Kentucky that centers on a different philosophy: minimally disruptive medicine.

"The idea is that we, as clinicians and engineers, need to become obsessed with how we provide the best outcomes for patients while having the smallest possible footprints on their lives," he says.

Why doctors need to start taking this seriously

I am very bad at my job as a patient. Last winter, I missed a few weeks of a prescription meant to improve bone density. When I arrived at the pharmacy, the refill wasn't there and I hadn't called to check in advance. It took about five days back and forth among my doctor, the pharmacy, and my insurance before I could pick up my pills.

You know who would do a lot better at managing all this information? A computer. I would love it if an electronic medical record would steal this particular job. If all my medical records existed in one place, digitally, I wouldn't have to spend hours on end chasing down records each time a new doctor requested a document.

Right now I keep all medical records related to my foot in a tattered, white envelope. I keep meaning to make a photocopy of everything inside, because if I lost it, I would need hours to recollect the contents. These files would be much more secure in a folder on my computer's desktop.

Last week, I decided to write down what was involved in getting a medical record — in this case, an MRI report. I needed it for an appointment with a new orthopedist.

More on American health care

Fatal mistakes

On Monday morning. I call the radiology facility. I listen to the list of options and punch in "2" for the film library. A woman picks up there after two rings. I ask whether they can email me the report. They can't — the only options are a fax or picking up the document in person. Because I am a human who lives in 2016, I do not have a fax machine. So I say I'll get my doctor's fax number and call back.

I call my doctor's office at 9:49 am. Nobody picks up, and I wait on hold. While I wait on hold, I start Googling "how to receive fax online." Turns out I can buy an online fax number for $10. At 10:09 I buy an online fax number and hang up.

I call the radiology office back and give them my newly acquired fax number. But it turns out I need to fax them a release form allowing me to get the records I want. This form I can download online.

So I get the form, fill it out, and send it back. I call to make sure they received it. Nobody picks up. I leave a message. It's 10:32 am now and I have to go to the meeting I am two minutes late for.

At 1:30 pm, I call the radiology office again. Somebody picks up! She says they have my release form — and she isn't sure why nobody sent me the MRI report I requested. She sends me the document at 1:34. I just barely have it in time for a 2:15 appointment.

This is a bad process. It's time-consuming for me — and for the radiology clinic, which has to deal with my incessant calls and messages. It also means I'm worse at my job.

It would save all of us time (and the doctor's office money) if I could log on to a website, fill out a release form, and then download my reports. This change doesn't even require any doctor's office to talk to another — it would still be my job to be the go-between.

As much as I desire better technology, there's something else that would make my patient work easier: an acknowledgment from the doctor that it exists.

Last December, a doctor told me to get an MRI and see him again three weeks later to go over the results. I wanted to scream, "Do you understand what its like to schedule an MRI?"

I did — I had done it three months earlier. I knew it would require his office putting together a justification for the scan and sending that to my insurance company. That usually took a few days or a week. Then the insurance company would need to preapprove the scan. That usually took a week or so — and another few days before I received a letter notifying me of the decision. Only then could I schedule the procedure.

But for my doctor, getting an MRI was simple — he just had to ask me to do it. It reminded me of something Montori said in our interview.

"Patients can often become the health care system's free labor," Mayo's Montori says. "The health care system knows that patients are motivated, that they want to get better. So it gains efficiencies by transferring the work."

Medicine often gets thought of as a one-way road, where doctors work to solve patients' problems. And don't get me wrong, that work is incredibly important; there are thousands of doctors who do incredible work every day, and I am grateful to have those people in my health care system.

But patients are doing work, too. It just happens outside of the clinic. Reducing that workload would it make it easier to comply with my doctor's orders — to make the care the medical system prescribes actually succeed. It would mean that patients don't have to choose between their jobs, their families, and their health care.

Even just a better acknowledgement of patient work would be a welcome improvement. It would only take a few moments for a doctor to tell me, "I know it will take some work to schedule that MRI, and we'll have to work through the authorization process."

Providing side effects for prescription drugs, after all, has become commonplace. That would make sense for patient work, too — better information and transparency would make the work easier to approach and more likely to get done. And that would be a big improvement over the health care system we have now.

Sarah Kliff is the deputy managing editor for visuals at Vox.

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