Guide Whats Wrong with Me?: The Frustrated Patients Guide to Getting an Accurate Diagnosis

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Early on, she recognized that technology could contribute to streamlining care. She joined a committee overseeing updates of a home-built electronic-medical-record system we used to rely on, helping to customize it for the needs of her fellow primary-care physicians.

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When she got word of the new system, she was optimistic. Not any longer. She feels that it has made things worse for her and her patients. Before, Sadoughi almost never had to bring tasks home to finish. Now she routinely spends an hour or more on the computer after her children have gone to bed.

She gave me an example. The list is intended to tell clinicians at a glance what they have to consider when seeing a patient. Sadoughi used to keep the list carefully updated—deleting problems that were no longer relevant, adding details about ones that were. With computers, however, the shortcut is to paste in whole blocks of information—an entire two-page imaging report, say—rather than selecting the relevant details. The next doctor must hunt through several pages to find what really matters. Before she even sets eyes upon a patient, she is already squeezed for time.

And at each step along the way the complexity mounts. When I do a Pap smear, I have eleven clicks. Why is it asking me what date, if the patient is in the office today? When do you think this actually happened? It is incredible! She continued rattling off examples like these. The rest came after hours.

The pointlessness of it did. Difficulties with computers in the workplace are not unique to medicine.

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Matt Spencer is a British anthropologist who studies scientists instead of civilizations. Years before, a graduate student had written a program, called Fluidity, that allowed the research group to run computer simulations of small-scale fluid dynamics—specifically, ones related to the challenge of safely transporting radioactive materials for nuclear reactors. The program was elegant and powerful, and other researchers were soon applying it to a wide range of other problems.

They regularly added new features to it, and, over time, the program expanded to more than a million lines of code, in multiple computer languages. Every small change produced unforeseen bugs. As the software grew more complex, the code became more brittle—more apt to malfunction or to crash. The I. There is, he said, a predictable progression from a cool program built, say, by a few nerds for a few of their nerd friends to a bigger, less cool program product to deliver the same function to more people, with different computer systems and different levels of ability to an even bigger, very uncool program system for even more people, with many different needs in many kinds of work.

Spencer plotted the human reaction that accompanied this progression. People initially embraced new programs and new capabilities with joy, then came to depend on them, then found themselves subject to a system that controlled their lives. At that point, they could either submit or rebel. The scientists in London rebelled. They insisted that the group spend a year rewriting the code from scratch.

And yet, after the rewrite, the bureaucratic shackles remained. As a program adapts and serves more people and more functions, it naturally requires tighter regulation. Software systems govern how we interact as groups, and that makes them unavoidably bureaucratic in nature. Conservatives and liberals emerge. Changes required committees, negotiations, unsatisfactory split-the-difference solutions. Many scientists complained to Spencer in the way that doctors do—they were spending so much time on the requirements of the software that they were losing time for actual research.

Yet none could point to a better way. The Tar Pit has trapped a great many of us: clinicians, scientists, police, salespeople—all of us hunched over our screens, spending more time dealing with constraints on how we do our jobs and less time simply doing them. And the only choice we seem to have is to adapt to this reality or become crushed by it.

Many have been crushed. The Berkeley psychologist Christina Maslach has spent years studying the phenomenon of occupational burnout. She focussed on health care early on, drawn by the demanding nature of working with the sick. She defined burnout as a combination of three distinct feelings: emotional exhaustion, depersonalization a cynical, instrumental attitude toward others , and a sense of personal ineffectiveness.

She and her colleagues developed a twenty-two-question survey known as the Maslach Burnout Inventory, which, for nearly four decades, has been used to track the well-being of workers across a vast range of occupations, from prison guards to teachers. In recent years, it has become apparent that doctors have developed extraordinarily high burnout rates. In , fifty-four per cent of physicians reported at least one of the three symptoms of burnout, compared with forty-six per cent in Female physicians had even higher burnout levels along with lower satisfaction with their work-life balance.

A Mayo Clinic analysis found that burnout increased the likelihood that physicians switched to part-time work. It was driving doctors out of practice. Burnout seemed to vary by specialty. Surgical professions such as neurosurgery had especially poor ratings of work-life balance and yet lower than average levels of burnout. Emergency physicians, on the other hand, had a better than average work-life balance but the highest burnout scores. The inconsistencies began to make sense when a team at the Mayo Clinic discovered that one of the strongest predictors of burnout was how much time an individual spent tied up doing computer documentation.

Surgeons spend relatively little of their day in front of a computer. Emergency physicians spend a lot of it that way. As digitization spreads, nurses and other health-care professionals are feeling similar effects from being screen-bound. There are messages from patients, messages containing lab and radiology results, messages from colleagues, messages from administrators, automated messages about not responding to previous messages.

The rest she deletes, unread. As I observed more of my colleagues, I began to see the insidious ways that the software changed how people work together. None of this was possible anymore.

What's Wrong With Me? The Frustrated Patient's Guide to Getting an Accurate Diagnosis

The doctors had to do it all themselves. As the chief clinical officer at Partners HealthCare, Meyer supervised the software upgrade. An internist in his fifties, he has the commanding air, upright posture, and crewcut one might expect from a man who spent half his career as a military officer. He still sees patients, and he experiences the same frustrations I was hearing about. Today, patients are the fastest-growing user group for electronic medical records.

In one project, Partners is scanning records to identify people who have been on opioids for more than three months, in order to provide outreach and reduce the risk of overdose. And the ability to pull up records from all hospitals that use the same software is driving real improvements in care.

Meyer gave me an example. A recent study bolsters his case. Researchers looked at Medicare patients admitted to hospitals for fifteen common conditions, and analyzed how their thirty-day death rates changed as their hospitals computerized. The results shifted over time.

In the first year of the study, deaths actually increased 0. But after that deaths dropped 0. Indeed, the computer, by virtue of its brittle nature, seems to require that it come first. Brittleness is the inability of a system to cope with surprises, and, as we apply computers to situations that are ever more interconnected and layered, our systems are confounded by ever more surprises.

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By contrast, the systems theorist David Woods notes, human beings are designed to handle surprises. Last fall, the night before daylight-saving time ended, an all-user e-mail alert went out. The system did not have a way to record information when the hour from 1 A. This was, for the system, a surprise event. The only solution was to shut down the lab systems during the repeated hour.

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Fetal monitors in the obstetrics unit would have to be manually switched off and on at the top of the repeated hour. Medicine is a complex adaptive system: it is made up of many interconnected, multilayered parts, and it is meant to evolve with time and changing conditions. Software is not. It is complex, but it does not adapt. That is the heart of the problem for its users, us humans. Adaptation requires two things: mutation and selection.

Mutation produces variety and deviation; selection kills off the least functional mutations. Our old, craft-based, pre-computer system of professional practice—in medicine and in other fields—was all mutation and no selection.