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

Patient and public involvement and engagement (PPIE) in research refers to studies conducted with or by members of the public, rather than for them. The Health Inequalities Assessment Toolkit (HIAT) aims to integrate an intersectional equity perspective into research and considers how people with real-life experience can contribute to this process. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2) is an international tool that standardises the reporting of PPIE in healthcare projects. There is growing interest in assessing the impact of public involvement (PiiAF) on both researchers and public contributors. The objectives of PPIE for the HANDCLAP study (Health inequalities in access to Dental care for children with Cleft Lip And Palate) was to ensure that parent and public voices were included at all stages of the qualitative research process, from study design through dissemination.

PPIE in this study was guided by the HIAT, GRIPP2 and PiiAF frameworks. HIAT assessments were conducted at three points during the project to ensure that equity was sustained. GRIPP2 was applied to report the aims, methods, outcomes, conclusions and reflections of PPIE. The Public Involvement Impact Assessment Framework (PiiAF) was used to assess the impact of PPIE.

Parents and public contributors participated in the following stages: proposal development, review of information sheet and consent forms, feedback on translated Welsh documents, PPIE discussion group, development of the visual topic guide and summary, feedback on qualitative interview questions and dissemination of findings.

This article shows how structured PPIE was used to improve research design, accessibility and relevance of the HANDCLAP study. Using established frameworks supported the consideration of equity, transparency and impact. Embedding PPIE at all stages is important in research addressing health inequalities.

Parents with lived experience were involved at all stages of the study. A diverse group of Parent helped the research team by giving feedback on study documents (such as the information sheet and consent form), helping to design better interview questions, and explaining why certain families find it difficult to access dental care. They shared their experiences of accessing dental care, which helped identify barriers, particularly for underserved groups, and informed changes to the study design, recruitment, and data collection for HANDCLAP study. Parent involvement also made it possible to develop more accessible and diverse outputs, including a visual summary of PPIE activities (Figure 2), animation video, and plain-language materials. These diverse outputs reflected parents' preferences for how findings should be shared. Parents were also involved in dissemination, including attending a national webinar.