When inviting patients to participate in clinical trials, your choice of words matters. Really matters!
As an example, we were engaged to assist with a trial that was behind schedule. The protocol evaluated patients with opioid-induced constipation. Before Clinical SCORE was engaged the client created pamphlets and posters with a headline reading “On an opioid?” followed by a paragraph describing some of the qualifying criteria and action steps. During interviews with patients taking opioids we learned that few knew the meaning of the word ‘opioid’. Patients described opioids as ‘prescription pain medicines’. When this term was used, recruitment significantly increased.
In another recent project, patients with early signs of a progressively fatal disease were frightened by the commonly used medical terminology describing the condition (I can’t say the condition because of confidentiality) being studied. The terminology used conveyed to patients a condition that was much more serious than they were willing to acknowledge. Patients had their own term for the condition, but this term was not included in the website key words or in Facebook ads. The result was that few patients with the targeted condition found the website, and patients who clicked through the Facebook ads were not candidates for the trial. This lead to costly delays in a major clinical study.
There is one published study which evaluated the language used to recruit patients into a prostate cancer trial. When treating prostate cancer, a common management approach is ‘watchful waiting’. When potential study subjects heard that phrase, some interpreted it to mean ‘willful neglect’ and declined participation. The phrase was switched to ‘active monitoring’ and the percentage of patients agreeing to participate increased substantially.
Similarly, the word ‘randomized’ is misinterpreted by many patients. To them, it conveys that the investigator does not know which the best treatment is for them, so their treatment is chosen at random.
There are standard recommendations; however, it is our experience that you need to test proposed patient/caregiver facing communications with typical patients and caregivers. We have conducted these types of projects for 20 years and continue to be surprised by words or phrases that resonate and words or phrases that create barriers.
If you would like assistance in ensuring that the words and phrases you use are compelling to patients, simply contact me. You can do that by responding to this email. Or, if you prefer, you are welcome to call me at 610-256-5623.