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’, ‘involvement’ and ‘participation’).
Having a better-informed community
One of the key reasons for consumer engagement is to improve trial awareness and trial acceptance in the community. Providing information about what trials are around, and communicating the results of trials to the community, might positively influence consumer attitudes towards clinical trials, and increase trial involvement and recruitment.
Trial Recruitment
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).
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 which focus on increasing prospective participants’ awareness of the health problem being studied, and its potential impact on their health are most effective. Additionally, engaging participants in the learning process appeared to further increase recruitment. (Caldwell et al., 2010).
One survey (Research!America, 2017) asked 1,006 US adults to think of possible reasons why individuals do not 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 in awareness campaigns. They found that normalising trial participation and promoting the potential benefits of being in a trial were key areas to focus on for 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 their research results to the community. This will ensure that consumers can use the information to make informed decisions about their own care.
Further Reading
- Caldwell, P. H., et al. (2010). Strategies for increasing recruitment to randomised controlled trials: systematic review. PLoS Medicine, 7(e1000368). https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1000368
- Institute of Medicine (US) Forum on Drug Discovery, Development, and Translation. (2010). Transforming Clinical Research in the United States: Challenges and Opportunities: Workshop Summary. Washington (DC). National Academies Press. 17226/12900
- Massett, H. A., et al. (2017). Raising Public Awareness of Clinical Trials: Development of Messages for a National Health Communication Campaign. Journal of Health Communication 5, 373–385. https://pubmed.ncbi.nlm.nih.gov/28339327/
- Research!America. (2017). Public Perceptions of Clinical Trials: National public opinion survey. Research!America. Retrieved from: https://www.researchamerica.org/