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October 23, 2018

The 3 big ways the health system is failing patients, according to 1,495 seriously ill patients

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    In a recent survey, nearly 1,500 seriously ill patients described the obstacles they faced in seeking care—revealing several key "weak points" in the notoriously complex U.S. health system, Margot Sanger-Katz reports for the New York Times' "The Upshot."

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    About the survey

    The survey was conducted and analyzed by the New York Times, the Commonwealth Fund, and the Harvard T.H. Chan School of Public Health. It included responses from 1,495 adults who either had been seriously ill in the past two years or were caring for someone with a serious illness. The researchers defined "seriously ill" as being hospitalized at least twice in the past two years and seen by at least three doctors.

    According to Sanger-Katz, "[T]he estimated 40 million people in this population visit doctors, hospitals, nursing homes and pharmacies the most, [and] they are the likeliest to see the weak points in the health care system."

    Uncovering the 'weak points' in the US health system

    The survey found that, even for the country's most frequent health care users, navigating the U.S. health care system can be overwhelming. Sixty-two percent of respondents, for instance, said they have felt "anxious, confused, or helpless" when navigating medical care.

    In particular, the patients described confronting three key obstacles.

    1. Doctors can't keep track of their patients' medical records

    Especially for patients who see multiple doctors each year, the providers they see may not have access to their full medical records. As a result, patients may receive duplicate and unnecessary treatments, scans, and tests.

    To overcome these communication gaps, the surveyed patients said they often must bring their own medical documents to appointments. Further, 78% of respondents said they bring a list of their medications to appointments, and 70% said they bring a list of questions to discuss with their provider.

    2. Patients feel like they can't navigate the health system alone

    Almost half of the seriously ill patients said they receive help in coordinating their appointments and treatments from a professional who works in their provider's office or for their insurer, and 95% of these patients said their coordinator is "helpful," according to Sanger-Katz. These patients were more likely to know the costs of their care and less likely to be subjected to duplicate tests and procedures, Sanger-Katz reports.

    Patients who didn't have access to a medical coordinator, meanwhile, often tried to recruit their own advocate. More than half of the survey respondents said they bring a family member or friend to advocate for them during their medical appointments, and a third of respondents said they seek advice from a family member or friend who works in the health care industry.

    3. Health care providers are often inattentive, confusing, and in conflict

    Twenty-two percent of the respondents said hospital staffers were not attentive to their needs, 18% said they received conflicting advice from medical professionals, and 15% said there were occasions when they did not understand the treatment they were receiving.

    These results "[reflect] just how hard it can be to navigate the health care system when you're sick," according to Sanger-Katz. "[The respondents] counted on the system to help them, but also recognized that it often let them down," Sanger-Katz writes.

    To prevent these misunderstandings, the respondents said they often sought to ask questions, do outside research, and get second opinions whenever possible.

    Tristan Berger, a patient whose had several operations as a result of spina bifida, said, "The doctor is just going to come in poke you and go, and you can't let them go until you feel comfortable with everything" (Sanger-Katz, "The Upshot," New York Times, 10/20).

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