Rebecca Dresser writes:
If experts did listen to patients, here are some of the things they would hear. First and foremost, patients want medical care. Many welcome the chance to help others through study participation, but few will knowingly compromise their own health needs for altruistic reasons. Moreover, a diagnosis of serious illness alters one’s psychological state. Seriously ill patients are looking for support and guidance from their doctors. Impersonal research requirements like randomization and control groups can be hard to reconcile with the sensitive and individualized care patients expect. And few patients welcome the prospect of undergoing extra procedures and examinations for the sake of research data collection. Even an additional one or two visits to the clinic can impose an immense burden on patients already burdened by serious illness.