The problem: has 3 dimensions:

1) Most health literacy research focuses on the individual, despite growing calls to broaden its conceptualisation to incorporate family, community and society dimensions. Lay members of the community are well placed to contribute to such research (‘patient and public involvement’: PPI).

2) Whilst there is growing evidence of its positive impact, there is criticism that such involvement can fail to meaningfully incorporate PPI within the research process. There is a dearth of examples of PPI in the Asian context.

3) The study was interrupted by the COVID-19 pandemic, resulting to changes in our methods.

The approach

Mixed-methods design to:

1. Confirm utility of the Health Literacy Test for Singapore (HLTS) within households in Singapore
2. Explore feasibility of working with lay collaborators to identify and engage households, collect data,  inform interpretation of findings and identify future research questions.

Iterative quantitative (socio-demographic/health data, HLTS scores) and qualitative (PPI contact summary data, de-brief focus groups) data collection. On completion, data from both were triangulated to identify the main themes.

Findings: 9 households/20 individual participants; 7 PPI collaborators. All PPI remained involved throughout the study, however channels of communication had to be adapted, as did the original one-off training package. Identifying multi-generational household participants was challenging. PPI collaborators highlighted that whilst inter-generational support is a feature of Singaporean society, external social factors make it difficult engaging younger people. They noted cultural challenges in developing trust and highlighted that access to digital platforms is not universal. Such challenges were exacerbated by COVID-19 restrictions, resulting in early suspension of recruitment. HLTS scores were high (mean: 36/40), but PPI observations indicate a lack of understanding of some items linked to language skills. 

Conclusions: PPI can increase impact and improve implementation of research findings. In this study PPI collaborators challenged researchers’ interpretations of health literacy data, inter-generational relationships, cultural issues of trust, willingness to participate in research and the extent of digital inclusion, particularly in the context of the pandemic restrictions. Such input has implications for future research design, including the reliability of tools such as the HLTS in community research settings.