Researchers' perspectives on public involvement in health research in Singapore: The argument for a community‐based approach

Abstract

Background Singapore is becoming a world‐class research hub, promoting the advancement of patient care through translational clinical research. Despite growing evidence internationally of the positive impact of public involvement (PPI), in Singapore PPI remains unusual beyond patient participation as subjects in studies. Objective To explore health researchers' understandings of the principles, role and scope of PPI, and to identify barriers and opportunities for implementation in Singapore. Design Semi‐structured qualitative interviews between April and July 2018. Data were analysed using thematic framework analysis. Results Whilst most participants (n = 20) expressed a lack of experience of PPI, the interview process provided an opportunity for reflection through which it emerged as a beneficial strategy. Interviewees highlighted both utilitarian and ethical reasons for implementing PPI, particularly around increasing the relevance and efficiency of research. In addition to those challenges to PPI documented in the existing literature, participants highlighted others specific to the Singaporean context that make PPI at an individual level unlikely to be successful, including the socio‐political environment and prevailing social and professional hierarchies. They also identified asset‐based strategies to overcome these, in particular, a more community‐oriented approach. Conclusion The cultural reluctance of individuals to question perceived authority figures such as researchers may be overcome by adopting an approach to PPI that is closer to family and local community values, and which facilitates patients and the public collectively engaging in research. Further work is needed to explore the views of patients and the public in Singapore, and the implications for other Asian communities.

Validation of a New Diabetic Retinopathy Knowledge and Attitudes Questionnaire in People with Diabetic Retinopathy and Diabetic Macular Edema

“…Similarly, our A scale provides an opportunity for clinicians to enhance patient care by detecting and address-ing easily correctable erroneous beliefs, especially as the expertise and authority of health professionals are highly respected in Singapore's hierarchical culture. 44 We found that higher K and A scores were associated with greater likelihood of reporting no difficulty accessing DR-related information, a proxy measure of patients' DR-related health literacy. 45 This is important, as limited health literacy has been independently associated with worse glycemic control and higher rates of DR. 47 This suggests that improving DR-related K and A could also enhance DR-specific health literacy, which, in turn, may improve clinical outcomes for people with diabetes and DR. Other studies have also reported a relationship between K and A and DR-related practices in patients with DME and DR, such as getting an eye exam, 15,16 although we were not able to assess this relationship in our study.…”

The “PPI Hawker”: An innovative method for Patient and Public Involvement (PPI) in health research

“…Effective and e cient use of resources PPI is often characterised as a time and energy intensive activity, and it can be this that deters researchers' enthusiasm and engagement for PPI 6 . The "PPI Hawker" addresses some of these concerns as it does not require the administrative burden or the expenses of sending out invitations, hiring a venue or transport for participants.…”

“…Patient and public involvement (PPI) in research is de ned as research that is carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them. Although PPI is a common component of health research in Western countries, such as the UK, Australia and Canada [1][2][3][4][5] , PPI is still in an early stage of development in Asian countries, including Singapore 6 . It is recognised that PPI enhances the quality and relevance of the research, and its impacts are greater when implemented early in the research cycle [7][8][9] .…”

The “PPI Hawker”: an innovative method for patient and public involvement (PPI) in health research

“…Effective and efficient use of resources PPI is often characterised as a time and energy intensive activity, and it can be this that deters researchers' enthusiasm and engagement for PPI [6]. The "PPI Hawker" addresses some of these concerns as it does not require the administrative burden or the expenses of sending out invitations, hiring a venue or transport for participants.…”

“…Patient and public involvement (PPI) in research is defined as research that is carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them. Although PPI is a common component of health research in Western countries, such as the UK, Australia and Canada [1][2][3][4][5], PPI is still in an early stage of development in Asian countries, including Singapore [6]. It is recognised that PPI enhances the quality and relevance of the research, and its impacts are greater when implemented early in the research cycle [7][8][9].…”