When people are sick – really sick – they want to get better. And their doctors certainly want them to get better.
Some doctors combine providing clinical care with a passion to do research in order to discover new ways to treat sick people. However, these clinical researchers often are required to do research to support their salary and get promoted.
As such, researchers could find themselves with a conflict of interest with regard to any given patient. They desperately need patients to participate in their research studies, but a study may not be the best choice for any given person. This process where the goals of the research get mixed up with the goals to treat the person is called a therapeutic misconception. So the medical profession takes great steps to make sure that the patient clearly understands all aspects of the research – the risk, benefits and reasonable expectations. Hospitals have committees that approve human research and they require clear forms that explain the process to assure that people are well protected.
In my experience, any time a sick person participates in clinical research, there is a tendency for him or her to engage in some element of unrealistic optimism. This means that patients believe that they have a better chance of a positive outcome from the research than others in a similar situation.
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It is a bit like people who feel their chances of winning the lottery are better than others. In medicine, the unrealistic optimism is not due to the doctor providing bad or misleading information, and it is usually not due to the patients not understanding the information. Rather, the patients interpret the information through their own overly hopeful lens. They tell you they “just feel in (their) heart that this drug is going to work.” But is it the doctor’s role to correct this optimism, perhaps bursting the patients’ bubble of hope and perhaps also risking that they will choose not to participate in the study.
Clearly if patients do not understand the goals, benefits and risks of proposed research, they should not be allowed to participate. But what do we do when they do understand, and they can clearly explain the research process back to the doctor in accurate terms, but they have unrealistic optimism based on their strong hope? We certainly don’t forbid unrealistic hope in other areas of life and we probably shouldn’t in medicine, so long as there is absolutely a clear understanding by the patient.