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Participating in device evaluations and research studies is crucial for advancing our understanding of how products work, improving usability, and enhancing overall product design. However, individuals with low literacy levels are often underrepresented in these studies. In the US, this issue has been addressed in part by implementing a screening tool called the Rapid Estimate for Adult Literacy in Medicine (REALM), but in the UK, recruitment is often based on education levels, which may not accurately reflect an individual's literacy level.
As recruiters, it's essential to understand the reasons why it's often challenging to engage with these groups of participants and to recognise the unique barriers that prevent them from participating in research studies. Understanding these barriers is crucial for ensuring inclusivity and equity in research. Here are a few reasons why individuals with low literacy levels may not take part in device evaluation and research studies:
Mistrust in the Healthcare System: Past experiences of discrimination or mistreatment within the healthcare system may lead individuals with low literacy levels to have trust issues, making them reluctant to participate in research studies.
Limited Health Literacy: Reading requirements in study materials, such as understanding instructions for use, medical terminology, or packaging labelling, may deter individuals with low literacy levels from participating, despite the study's purpose being to ensure understanding for all users.
Fear of Stigmatisation: Individuals may fear being judged or stigmatised by researchers due to their literacy skills, leading to reluctance to participate in research studies.
Language Barriers: Those who speak languages other than English may face difficulties understanding research materials or communicating effectively with researchers.
Limited Access to Information: Individuals may have restricted access to information about research opportunities due to factors like limited internet access, literacy skills, or reliance on informal communication channels.
Healthcare Disparities: Socioeconomic factors can contribute to disparities in healthcare access and quality, making individuals from low literacy backgrounds less likely to engage with the healthcare system and research opportunities.
Concerns About Privacy and Confidentiality: Individuals with low literacy may be more apprehensive about the privacy and confidentiality of their personal health information, particularly if they lack trust in healthcare institutions.
Perceived Lack of Benefit: Individuals with low literacy levels may perceive research participation as offering little personal benefit outside of any financial gain, especially if they don't understand the potential impact of research on healthcare outcomes or if findings aren't communicated in an accessible manner.
Recruiter Strategies to Engage Participants with Low Literacy Levels:
- Use engaging formats such as videos, diagrams, infographics in all initial outreach, and plain, clear language in communication materials.
- Ensure clients are aware of potential challenges when asking respondents to complete detailed consent forms or study documentation.
- Utilise community outreach and referral networks to reach participants through trusted channels.
- Collaborate with literacy organisations to enhance understanding of research opportunities and support participation.
- Raise awareness through targeted community outreach efforts and education about the importance of participation.
- Gather feedback from participants to identify barriers and create a supportive environment.
By addressing these barriers and implementing proactive strategies, recruiters can create more inclusive and equitable recruitment processes, ensuring that individuals with low literacy levels are effectively engaged in device evaluation and research studies.
