Advice From Health Care’s Power Users

Advice From Health Care’s Power Users

Findings from the Survey Conducted by SSRS for the New York Times, The Commonwealth Fund and the Harvard T.H. Chan School of Public Health

When you’re sick, the health care system can be scary and confusing. But in a recent survey, seriously ill Americans shared some hard-won wisdom.

If the health care system seems confusing to you, you are not alone. In a large recent survey of the most seriously ill people in America, we learned that they, too, find it difficult to navigate. But they have developed a few strategies for getting through. Here are some tips and pitfalls about how to be sick from a group with lived experience.

Among the seriously ill people we surveyed with the Commonwealth Fund and the Harvard T.H. Chan School of Public Health — those who had been hospitalized twice and seen three or more doctors in recent years — bringing documents with them to doctor’s appointments was common. Seventy-eight percent of them carried a list of medications. Seventy percent brought a list of questions.

Many people in our survey had seen more than five doctors in the last year. So bringing records with them made sense, to ensure that each physician knew what others were doing. In an ideal world, every doctor would have a patient’s complete medical records. But, in many cases, medical records remain siloed and hard to share digitally.