From time to time, I am asked by someone about participating in a medical research study. These situations are usually when an individual, or someone close to them, has unmet medical needs. Understandably, a patient with a condition who is not improving on standard treatment, would be amenable to participating in a clinical trial to receive experimental treatment.
I find that most folks misunderstand and exaggerate the benefits they may receive as a medical study participant. Sometimes, I feel their “misunderstanding” is fueled by study investigators who may overtly or unconsciously sanitize their presentation to patients and their families. There is no malice here. Investigators have biases and likely believe that their experimental treatment actually works. Their optimism is likely evident in their communications.
Here’s what an investigator might say to a patient.
I thought you would be interested in a new clinical trial testing a new medicine for your disease. Preliminary data show promising results.
If you were a patient, wouldn’t you infer that the drug might help you?
Patients, I have found, are of the mistaken belief that they may directly benefit from the drug being tested. Of course, this makes sense to them. Their rheumatoid arthritis drug isn’t working. They are informed of a clinical trial of a new treatment for patients who do not respond to conventional treatment. Obviously, they enter this trial with the hope that their condition will improve. Unfortunately, this is the wrong way to approach a medical study.
Clinical trials are not designed to benefit the participants. They are performed to generate new knowledge that may help future patients. This is the key point that so many study participants are not fully aware of, and they should be. The investigators do not know important data about safety, efficacy, and dosing. These are among the fundamental data that the study — and future studies — will determine. If medical investigators knew that the drug actually worked, then there would be no need for a clinical trial. There’s a reason behind the term experimental treatment.
If you want to enter a clinical trial, know that you are doing so to help others who will come after you. This is a selfless and praiseworthy event. Indeed, we have all benefited from the sacrifice and altruism of prior patients who agreed to create new knowledge to help us. If we enter a study, we may not personally receive a return on investment for our efforts, but we are paying it forward to others.
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