One of my roles as a patient research advocate was to help the patient community to understand the methods of clinical research and to translate study result so persons with the disease and receiving recommendations for treatment could make better informed decisions; another was to communicate to researchers the research preferences of patients (the primary stakeholders) and their loved ones. ( For example, the importance to patients of including quality of life endpoints to supplement time to events (PFS) primary endpoints in cancer trials. )
In this capacity I advised the FDA, the NCI, and the primary investigators in the Alliance cooperative group and reviewed protocols and consents as a member of the CIRB.
From these experiences I learned that few scientists take the time to explain their work to the public or put enough effort into writing plainly . I did not find the jargon and concepts especially challenging to appreciate and translate in the clinical research domain. I wish I could say the same for much of the correspondence and papers devoted to statistics.
I put this down for consideration by this fine group … asking that you devote at least some time (especially when asked) to explain the relevance of your idea to the patient, or to the public – a public that increasingly does not trust science.
“According to a November 2023 Pew Research Center survey, Americans’ trust in science and scientists has declined since the start of the COVID-19 pandemic. The survey found that 57% of Americans say science has had a mostly positive effect on society, which is down 8 percentage points since November 2021 and 16 points since before the pandemic. Additionally, 27% of Americans say they have “not too much” or “no confidence” in scientists, which is lower than at the start of the pandemic.”