An FHI Clinical team member recently described her experience with the unwillingness of her mother, who has mild dementia and for whom she’s a caregiver, to participate in a clinical trial. Yet, when presented with the opportunity by her neurologist, her mother opted out — she didn’t like the idea of being reminded of her dementia and her “deteriorating” state. This reaction by her mother emphasized to her that clinical research might not appeal to everyone or tell the person’s whole story.
Hearing her story also prompted our team to consider a component of research that can be overlooked as we move through our day-to-day activities of planning and conducting trials — the personal reasons for choosing whether to participate in research.
Check out this article to read more about how Joy Toro, Senior Clinical Strategy Director, balances her experience as a caregiver for her mother, healthcare accessibility and representation in clinical trials.
If we take a moment and consider the trends of participation, we might recognize three groups of potential participants — those who:
- Always show a willingness to participate
- Have some barriers to participation
- Are just not going to participate
Sign me up!
The enthusiasm of some people to step up and say yes to research can be refreshing, especially in a trial for which recruitment has been particularly challenging. This willingness can stem from:
I might need some convincing...
I'm just not interested.
And it's okay.
So, at the end of the day, we can and should address potential barriers to participation. To ensure our efficacy and safety findings can be applied to the people affected — whether by a disease or the outcomes of a vaccine or preventative treatment — we need to perform our due diligence to include a sample of people in our research that is representative of that larger population. At the same time, take a moment and remember that we are asking a favor of complex human beings who might be going through one of the toughest parts of their lives. And it’s okay for them to say no.
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