Patients generally don’t get the blame when they get a misdiagnosis — when a doctor misses a cancer tumor or fails to order a crucial test.
But a St. Paul organization is challenging patients to examine what they could do to reduce such mistakes in the first place. The Jefferson Center, which uses “citizen juries” to craft policy proposals, gathered consumers in Syracuse, N.Y., last month to discuss how patients could help doctors get things right. The project is among the first to tackle misdiagnosis but won’t be the last; the U.S. Institute of Medicine will put the problem on the national map with a report due this week.
“We tend to pick things that are really technical, really complicated, and really messy,” said Kyle Bozentko of the Jefferson Center, which received a federal grant along with the Society to Improve Diagnosis in Medicine and Syracuse University to generate patient-based solutions to misdiagnosis.
About 10 percent of diagnoses are wrong, studies have found, but the reasons range from absent medical records to misinterpreted tests to physician overconfidence.
Jefferson asked its focus groups to consider things patients could do to help, and to rank them.
Top on the list: “Be truthful about your symptoms and other behaviors when telling your doctor about your history.”
That might seem obvious, but every doctor has a story about the patient who hid a fungus or a rash out of embarrassment.
Also highly rated: “Be prepared to discuss 8 characteristics of symptoms (quantity, quality, aggravating factors, alleviating factors, setting, associated symptoms, location, timing).”
Focus groups didn’t see as much value in patients taking copious notes or peppering their doctors with questions.
The recommendations will be merged with a set from health care providers and circulated to hospitals and clinics.