Why engage consumers?
This page describes why sharing and communicating the role and value of clinical trials is essential
Within this Toolkit, consumer engagement is defined as ‘where information and knowledge about research is shared with consumers and the community so that they are better informed on why, how, where and by whom research is conducted’ (the about involvement and engagement webpage differentiates the terms ‘engagement’ and ‘involvement’ and ‘participation’).
Researchers’ estimates of how many trials achieve target recruitment vary, but it may be that as many as 90% of clinical trials worldwide fail to enrol patients within the allotted time period (Institute of Medicine 2010). One of the key reasons for consumer engagement is to improve trial awareness and trial acceptance by identifying messages that may positively influence consumer attitudes towards clinical trials to increase trial recruitment.
The reasons for poor recruitment have been widely explored. One Australian systematic review compared methods of recruiting individual study participants to establish effective recruitment strategies. The group concluded that strategies that focus on increasing potential participants’ awareness of the health problem being studied, its potential impact on their health, and their engagement in the learning process appeared to be most effective in increasing recruitment (Caldwell et al. 2010).
One survey (Research America 2017) asked 1006 US adults to think of possible reasons why individuals don’t participate in clinical trials. Lack of awareness, lack of trust and perception of risk were identified as the three most significant barriers to trial participation.
To address low awareness and attitudinal barriers to clinical trials, Massett et al. (2017) conducted an environmental scan to identify the behavioural determinants that should be addressed by awareness campaigns. Normalising trial participation and promoting the potential reward of being in a trial, were identified as key areas to focus engagement activities.
These initiatives suggest that researchers and research organisations should engage consumers and the community to:
- ensure they better understand the benefits of clinical trials and why they are conducted
- normalise clinical trials by promoting clinical trials as a routine care option
In addition, researchers and research organisations should find the most appropriate ways to disseminate the result of their research to the community so that this information can be used by consumers to help them make informed decisions about their own care.
- Institute of Medicine (US) Forum on Drug Discovery, Development, and Translation. Transforming Clinical Research in the United States: Challenges and Opportunities: Workshop Summary. Washington (DC): National Academies Press (US); (2010). 2
- Caldwell, PH et al. Strategies for increasing recruitment to randomised controlled trials: systematic review. PLoS Med (2010);7:e1000368
- Public Perceptions of Clinical Trials: National public opinion survey. Research America! (2017)
- Massett, HA. et al. Raising Public Awareness of Clinical Trials: Development of Messages for a National Health Communication Campaign. Journal of Health Communication 22.5 (2017): 373–385.