The perception that adults always know best the thoughts and feelings that adolescents have around their disease could not be further from the truth.
Too often adults forget about or quiet the voices of adolescents (12–17 years old) and assume they know what’s best for them. With the best of intentions, decisions are made on their behalf, often taking away their opportunity to be heard or to tell their own stories. Vulnerable groups1 such as adolescents have much to say that can truly shift the way industry leaders perceive needs, motivators, and barriers to clinical study participation. Leaders simply need to take the time to stop, ask, and actively listen.
Understanding patients and the system of individuals, groups, and communities that support them, should be the first step in the earliest stages of clinical trial development and study design. Skipping this step is a missed opportunity to truly understand the needs and desires of the people we are seeking to help.” Melissa Lewis, Vice President, AXON
When engaging with adolescents, invaluable insights can be gained. Including their feedback prior to the development of a protocol is critical to study success. The true impact and experience of living with a disease or condition can only be shared by someone living with it, no matter their age. Those we often think have the least to say have more to contribute than one could imagine.
"When we listened to adolescents, it was very enlightening to see the difference between what they were looking for when considering a clinical trial and what their parents thought they were looking for. It provided us with a unique perspective into their own experiences, preferences and concerns and also allowed us to take these into consideration when designing our trials and related materials." Léa Proulx, Patient Voice Partner, Roche
Discover how AXON partnered with Roche to give adolescents a seat at the table of decision around their involvement in clinical trials. Join our session at SCOPE EU, in Barcelona:
October 17, 2023
15:05
InterContinental Barcelona (Fira Center)
References
- Gordon BG. Vulnerability in research: basic ethical concepts and general approach to review. Ochsner J 2020;20(1):34–38.