Some patients in our survey said working on questions in advance was empowering. Doctor’s visits are often over before you know it, and it can be hard to follow up afterward.

“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,” said Tristan Berger, 47, of Tucson, who has had numerous orthopedic operations for complications from spina bifida.

Find an advocate

More than half the people in our survey said they brought a friend or family member with them to every appointment. When you’re sick, you may not remember everything that is said to you. A second set of eyes and ears can be helpful.

People who are very ill, said John Benson, a senior research scientist at Harvard who helped devise the survey, “need somebody who will be able to function who is not ill.”

About a third of people in our survey said they had a friend or family member in the health industry whom they could go to for advice. Those people were often used as sounding boards for finding the best doctors, or troubleshooting problems with treatments. Of course, not everyone has the good fortune to have a medical professional in the family.