Exploring the potential for public involvement in health research in Singapore

• Main Author: Luna Puerta, Lidia
• Other Authors: Helen Elizabeth Smith
• Format: Thesis-Doctor of Philosophy
• Language: English
• Published: Nanyang Technological University 2020
• Subjects: Science::General::Moral and ethical aspects; Science::General::Social aspects
• Online Access: https://hdl.handle.net/10356/145376
• Institution: Nanyang Technological University

Despite growing evidence of the positive impact of public involvement, formally referred to as patient and public involvement (PPI), in research, this remains rare in Singapore. The potential of PPI in the Singapore-Asia context has to be explored. I conducted a three-phased exploratory study aiming to: 1) set the background through a mapping review of published articles and grey literature, including media reports, 2) provide a national perspective through a qualitative study guided by thematic framework analysis and 3) provide a study perspective through a case study of involvement in a local biobank study using the Theoretical Domains Framework. An iterative research process was adopted throughout all phases, enabling findings from each phase to be integrated. Phase 1 highlighted a shift towards patient-centeredness in Singapore, both in clinical curriculum and practices, and a desire to continue the road of patient activation and engagement. The shift for the clinical aspect could facilitate a shift in research-oriented tasks. Phase 2 revealed that most interviewees (n = 40) expressed a lack of experience with PPI, which was perceived as a beneficial strategy, both by researchers and by lay members. Whilst highlighting both utilitarian and ethical reasons for implementing PPI, challenges specific to the Singapore-Asia context made involvement at an individual level less likely to be successful. Interviewees - researchers from diverse disciplines and levels of experience, and with roles in funding panels and ethics boards, and lay members of diverse background and ages - identified formal and informal strategies to overcome barriers, favouring an asset-based, more community-oriented approach. In Phase 3 biobank researchers’ attitudes were best described through the theoretical domains of knowledge, skills, professional role, professional identity, environmental context and resources, and goals. Sometimes, PPI was simply seen as a middle “nice to have” element, but not one to be considered before other priorities were resolved. Researchers’ experiences of collaborating with the public during this case study were described as a motivation for further involvement. A cultural reluctance of individuals to question perceived authority figures, such as health professionals, clinical scientists and researchers was noted in both Phases 2 and 3 of this study. It may be overcome by adopting an approach to PPI that is closer to local community values, and which facilitates patients and the public collectively engaging in research. Careful consideration needs to be given to issues of resource and support to enable members of the public to engage in meaningful ways that will deliver research best placed to improve patient outcomes. The project’s findings have been used to develop a useful framework to develop and support PPI in the Singapore-Asia context: the supported model of involvement. In the Singaporean context, the timeliness of involvement implementation will heavily rely on political opportunities, as central coordination and support appears to be a decisive factor for many. Despite not having a recipe for involvement, successful work with members of the public is more likely if adhering to four sets of basic principles: adapted to the local context, diverse and inclusive, timely and purposeful and reciprocal and respectful. Preparing fertile ground for collaboration will also require planning and early work building relationships and trust.