Engaging diverse communities in Patient and Public Involvement and Engagement (PPIE) is vital for conducting cancer research that reflects the needs of all populations.
However, populations such as low socioeconomic groups often remain underrepresented in PPIE. The cumulative effect of various barriers to engaging with PPIE (for example digital literacy and financial and language related barriers) can lead to the underrepresentation of low socioeconomic groups, limiting the inclusivity and effectiveness of research. Below are some reflections on improving diversity and inclusion in PPIE, gathered from hosting awareness raising workshops with individuals from low-socioeconomic backgrounds. This work was funded by Cardiff University’s Future Leaders in Cancer Research Award.
Strategies for Inclusion
To foster inclusive PPIE with low socioeconomic groups, researchers should aim to adopt targeted strategies that address:
- Community Outreach and Education: Proactively engaging with low socioeconomic groups through established community organisations can be an effective route to help raise awareness about PPIE and available opportunities. Workshops and informational educational sessions can clarify PPIE processes and emphasise the importance of involvement and engagement work in research.
- Building Trust through Relationships: Establishing relationships with community leaders and organisations can help bridge the trust gap between researchers and communities. By collaborating with trusted figures in low socioeconomic communities, research organisations can facilitate more authentic involvement and engagement.
- Creating Inclusive Recruitment Processes: Utilising multiple avenues to reach potential PPIE members, including community events, social media, and partnerships with local organisations, is important to consider when trying to reach low socioeconomic groups. Tailoring approaches to meet the unique characteristics of each community is essential.
- Flexible Participation Options: Offering varied ways for individuals to be involved—such as virtual meetings, telephone calls, emails, or small group discussions—can accommodate varying schedules and preferences. Providing incentives can also help alleviate financial barriers to involvement and demonstrate value.
- Feedback and Adaptation: Creating feedback opportunities where individuals can voice their thoughts and suggest improvements to their PPIE experience is encouraged. Research organisations should be willing to adapt their approaches based on the feedback received, demonstrating a commitment to genuinely inclusive practices.
Summary
By including the voices of individuals from low socioeconomic backgrounds in PPIE, we can help bridge the gap between scientific inquiry and the lived experiences of those affected by cancer. Incorporating the diverse perspectives of a range of patients and community members helps to ensure that research addresses real-world concerns, prioritises relevant outcomes, and improves the applicability and effectiveness of research. Efforts to improve diversity in PPIE can help to foster an environment where inclusive and meaningful involvement can thrive, ultimately enhancing the relevance and impact of cancer research outcomes.
Written by Dr Pam Smith, WCRC Academic Lead for Patient and Public Involvement