1. Discovery
Public awareness of, education about, and access to clinical research
“Discovery” is the time when members of the intended audience learn about research for the first time. Here is an opportunity to build trust in the research establishment and demonstrate transparency in research.
- At the “Discovery” stage of the clinical trial life cycle, general information about clinical trials or a larger research program may be shared for informational purposes and/or to lay a foundation for future study-specific recruitment.
- The focus at this point is on general education and on developing relationships that lay the foundation for a person’s future research interest and study participation.
- In addition, “Discovery” can be two-sided: this is an ideal time for research stakeholders to gather information from the potential study population to better support a research idea, define research outcomes that potential participants agree are important, and gauge interest in the research study.
- Ideally, many of these activities would occur prior to finalizing a study protocol
- Any materials and scripts used to introduce research concepts should ideally be subject to usability testing with the population of interest.
Click through the individual tabs below to learn more about how your “Discovery” research communications can be improved through plain language, numeracy, clear design and cultural considerations.
Plain Language
- During the “Discovery” stage, use clear and simple language to explain general research concepts, like
- What is research?
- How is research different from medical care?
- Should I be a research participant?
- What are my rights if I participate in research?
- Use resources to support plain language explanations of clinical research:
- Participant’s Bill of Rights to make potential participants aware of their rights
- Research Pamphlets to describe research concepts and procedures
- Glossaries for words that are more likely to be understood by the intended audience.
Numeracy
- During the “Discovery” stage, numeric information needs to be communicated in simplified ways.
- Share targeted information to help specific communities become more aware about prevalence and incidence rates of specific health issues (and how researchers are studying them), as well as information on risk and severity (like in the graphic).
Clear Design
- During the “Discovery” stage, general information about clinical trials or a larger research program may be shared.
- This is a time for clinical research stakeholders to share information about research and topics that may be of interest to the target community.
- Pamphlets, flyers, and outreach materials that describe clinical research should use strategies that make the information clear and easy to understand. The adjacent material shows how information about research can be presented in relatively simple ways.
Source: National Institute on Aging
https://www.nia.nih.gov/sites/default/files/participate-ad-research-infographic-508-1.pdf
Cultural Considerations
During the “Discovery” stage, clinical research stakeholders can to get to know more about the study population.
When clinical research stakeholders approach the community of interest at “Discovery,” it is important to keep in mind:
- the perceived power differential between the medical research establishment and the individual and general public.
- the impact of historical research exclusion and exploitation on communities’ openness to joining a study.
Teams drafting research information should include input from people who are similar to the study population and share their characteristics.
- These individuals can help create effective communications and may help support interactions if necessary.
As a research study is developed, input from the community of interest on study design, study logistics, and study outcomes helps researchers offer research participation opportunities that are relevant and important to the study population of interest through a process of:
- Getting to know the needs of the population,
- Ensuring the study is relevant to that population,
- Developing a protocol with procedures that are more likely to be adhered to.
- Identifying what information the population wants after the study is over.
Consider including patient navigators and cultural brokers to help promote trust in research in the local community