Embedding Equity, Transparency, and Impact Through Patient and Public Involvement: Insights From the HANDCLAP Study

Area of Science:

• Health Services Research
• Qualitative Research Methods
• Health Equity Studies

Background:

• Patient and Public Involvement and Engagement (PPIE) is crucial for research conducted with communities.
• Established frameworks like HIAT, GRIPP2, and PiiAF guide PPIE and impact assessment.
• The HANDCLAP study focused on health inequalities in dental care access for children with cleft lip and palate.

Purpose of the Study:

• To integrate parent and public voices throughout the HANDCLAP qualitative research process.
• To ensure equity, transparency, and impact in research addressing health inequalities.
• To improve study design, accessibility, and relevance through PPIE.

Main Methods:

• PPIE guided by Health Inequalities Assessment Toolkit (HIAT), GRIPP2, and Public Involvement Impact Assessment Framework (PiiAF).
• HIAT assessments conducted at three project points to sustain equity.
• GRIPP2 used for reporting PPIE aims, methods, outcomes, and reflections.

Main Results:

• Parents contributed to proposal development, document review, and feedback on study materials.
• Parental input refined interview questions, topic guides, and identified access barriers for underserved groups.
• Diverse outputs, including visual summaries and plain-language materials, were co-developed with parents.

Conclusions:

• Structured PPIE enhanced the HANDCLAP study's design, accessibility, and relevance.
• Frameworks facilitated consideration of equity, transparency, and impact in PPIE.
• Embedding PPIE across all research stages is vital for studies on health inequalities.