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.


| Background on public involvement
There is growing evidence that public involvement (PPI) in research, defined as research being carried out "with" or "by" members of the public rather than "to," "about" or "for" them, 1 carries a number of benefits, including the production of higher quality, more efficient and effective research. [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16] Such evidence has resulted in some health research funders, such as the UK's National Institute for Health Research (NIHR) 2 making it a mandatory consideration involving human participation. Although patient involvement can be interpreted in various ways, the key principle is of active PPI in the activities, organization and governance of health research, whether in specific projects or research more generally. 2 Arguably, the case for PPI is rooted in the principles of biomedical ethics. The utilitarian case argues that by incorporating public knowledge and expertise, researchers can identify user-centred research objectives and questions; develop more appropriate research materials; enhance recruitment strategies; enrich data analysis; improve cost-effectiveness 10,17,18 ; and optimize dissemination, implementation and impact of the research findings. 6,10,11,13,19,20 As a result, PPI is being embraced not only by many public bodies but by commercial enterprises, such as the pharmaceutical industry. 17,18,21 Balancing this utilitarian model is the Kantian "Categorical Imperative" arguing that human beings should not be treated as a means to an end. 22,23 From this perspective, it is seen that members of the public are legitimate, central stakeholders in research affecting their health and that of their communities. PPI emphasizes the importance and role of lay knowledge. It promotes patients and members of the public as experts in their "lived experience" both entitled to be, and having a responsibility to be, meaningful partners rather than passive subjects and/or recipients of research. [24][25][26][27] In doing so, it, first, challenges the authority of traditional expert knowledge and, second, plays a crucial role in opening up research evidence to public scrutiny.

| The Singaporean context
Whilst Western models have tended to emphasize the contribution of individuals, 28,29 there is a growing trend to move to PPI strategies that are more inclusive and engage those who are most disadvantaged, with the greatest health needs. So far as we are aware, there is little consideration of the concept of PPI or its use in Asian countries. Singapore provides an interesting case study for exploring the potential of PPI within an Asian context.
Since becoming an independent nation in 1965, Singapore has experienced dramatic economic and social change. In little over 60 years, it has risen from "Third World" poverty 30 to being an "Asian Tiger," sitting alongside Hong Kong, South Korea and Taiwan. 31 The drive to survive that powered this enormous transition is now focused on addressing the tension between its political and cultural position as an outward facing country and its geographical context, surrounded by traditional Asian cultures with a growing emphasis on religious fundamentalism, for example Indonesia and the Philippines. 32 Given these existential challenges, it is perhaps not surprising that Singaporean culture privileges the collective rather than the individual experience. 33 As an island city-state with scarce geographical resources, a resident population that has doubled in the past 50 years 34 and which is one of the most rapidly ageing in the world, 35 the Government has prioritized investment in knowledge capital. 36,37 In 2016, SG$19 billion (US$14 billion) was invested in education and research. 38 Consequently, Singapore is rapidly becoming a world-class research hub, attracting globally renowned scholars and researchers. 38,39 Whilst this drive to innovation and excellence in research includes an emphasis on the advancement of patient care through translational clinical research, 40 PPI is unusual. This paper reports findings from interviews with researchers in Singapore, exploring their experiences and views of PPI.

| Study aims
To explore: • The extent to which those working in health research understand the principles, role and scope for involving patients and the public in health research.
• The challenges and opportunities for implementing PPI in Singapore.

| ME THODS
An exploratory, qualitative design was used of face-to-face semistructured interviews. These were designed to offer the opportunity for participants to reflect on their experiences and produce their own narratives, being guided rather than lead by the interviewer. 41,42 The initial topic guide was informed by the literature on the scope and practice of PPI. It was adapted iteratively as the interviews proceeded to take account of emerging themes to be explored in subsequent interviews. These emerging themes were identified through the use of reflexive notes (see below) and preliminary data analysis.
Brief personal profile data on each individual were collected in order to contextualize accounts and experiences (Table 1). All interviews were conducted by LLP.

| Recruitment
Potential participants were identified through purposive sampling from searching the websites of different research institutions in Singapore and by snowball sampling. 43 The intention was to include informant rich cases to ensure a wide range of perspectives so as to learn as much as possible about the topic under investigation (Table 1). Invites were sent via email with a study flyer attached.
When people responded positively, an information sheet and consent form were sent, together with arrangements for the date, time and location of the interview. Participants were eligible for inclusion if they were currently involved in health-related research in Singapore and were able to communicate in English. All participants received a SGD15 voucher as a token of appreciation. Data collection took place between April and July 2018, and all interviews were conducted at the workplace of participants.
Informed consent was obtained at the beginning of the interview and confirmed again at the end. All interviews were audio-recorded, transcribed verbatim, cleaned and anonymized before analysis.
Participants were assigned a code in replacement of their identity, consisting of the letter "R" followed by a two-digit number in order of sequential recruitment (ie R01), gender, ethnicity, position and years of experience. All data were stored securely in line with Nanyang Technological University's requirements for safe data storage. 44 Data saturation was based on inductive thematic saturation (see below), and recruitment ceased when no new themes were emerging. 45

| Analysis
Socio-demographic and professional data were summarized descriptively. A six-stage analysis plan was agreed based on thematic analysis 46,47 (Figure 1). To ensure reliability, a process of inter-coder consensus 48 was adopted, two authors (LLP and BB) independently coded six randomly selected transcripts and developed a coding frame which was then applied to the remaining data by LLP. Where there were discrepancies, the third author also read the data to reach consensus. This coding frame was further revised as codes were dropped and/or emerged as more dominant. The analysis process was both iterative and concurrent with data collection, 49 increasingly moving from the concrete reality of data to abstract, theoretical constructions. 50

| Reflexivity
Detailed reflexive notes were made about each interview as soon as possible post-interview. These contact summary forms included notes on unexpected themes that arose might warrant reviewing in subsequent interviews. 51 The process of reflexivity continued during the analysis in the form of memos (Figure 1).

| Ethics
The study was reviewed and approved by Nanyang Technical

| RE SULTS
A total of 36 potential participants were contacted: 26 (72%) replied and 20 (56%) were interviewed (Table S1 provides the reasons six potential participants were not interviewed). The average interview lasted approximately 1 hour. The total amount of audio data was 22 and a quarter hours.

| Reasons for adoption
Interviewees identified a number of utilitarian reasons for including PPI, of which the most frequently mentioned was making their research "easier" by either optimizing the design, and/or enhancing recruitment:

| Adoption challenges
The overarching challenge to the adoption of PPI was a lack of un-  Linked to this, the broader socio-political context of Singapore was also seen as a potential challenge to patient autonomy, and con-

| Opportunities for implementation
Interviewees highlighted the concept of community-based PPI that would require outreach activities as a way of "being closer to the community" (R03, F, Chinese, Doctoral Researcher, 1-5), and intro- Interviewees identified such education occurring at two levels.

| D ISCUSS I ON
This qualitative study suggests that although researchers in Singapore lack experience of PPI, they recognized it as having a potential benefit and identified a number of reasons for adoption. Such reasons were predominantly utilitarian, around practical help, for example, in improving recruitment, retention and increased impact. However, there was also recognition of the symbiotic relationship between researchers and participants, as members of a shared community, and the consequent responsibility of researchers (and funders) to treat people as people and legitimate the position of PPI in research. Yet, in line with other research, 52,53 this was tempered by a lack of awareness of the expertise that lay perspectives bring to research resulting in evidence of paternalism. 23 Some researchers in this study, as in other work, 54-58 struggled to see the value of PPI and were reluctant to share power and control of their work, seeing patients and the public as passive subjects of research. This is reflected in existing literature describing Singapore's hierarchical society, 33,59 in which lay people rarely challenge the perceived expertise and authority of professionals and researchers. 30,33 Such power imbalance may be deepened by a poorer understanding of research, lower literacy and poorer English amongst those with the greatest health needs, particularly older populations, 60 with a consequent reluctance to speak out and/or engage with research.
Other challenges to PPI identified in this study include it being viewed as time-and energy-intensive, and as an added hurdle to developing and carrying out a research project, a concern that is also expressed in the wider literature. 5,61 In 2015, the NIHR in the UK 62 concluded that despite PPI being progressively adopted, there were "inconsistencies in practice and implementation" and cited negative attitudes of researchers as a major barrier. Consequently, PPI is still often relegated to the role of "thinker at the edges," 58,63 within a dominant positivist research paradigm 64 that hinders the inclusion of "lived experiences" of health and illness.

| Possible ways forward
With 85% of health research globally avoidably wasted, in part because of a lack of relevance to patients and the public, [65][66][67] PPI was seen by researchers in this study to offer opportunities to increase relevance, effectiveness and efficiency. Singapore's ageing population and the concomitant increasing demands on health services were frequently cited as reasons for seeking ways to maximize best use of resources and increase impact. Our findings highlight the ubiquity of social hierarchies in Singapore, an issue recognized as a critical challenge to meaningful PPI. 55,56 However, it may be that the socio-political context of Singapore, with its emphasis on Eastern cultural notions of collectivism, 68 offers opportunities to address this. In a context where society is promoted "above self," 69  bers. This presents an opportunity to consider ways of implementing PPI at an inter-generational, household level and within community groups. [72][73][74] Methods could build on current methodological innovations such as community co-design 75 and cultural animation. 28 In addition to identifying and prioritizing research questions, this participatory collective approach could include participation throughout the research process, including data analysis, dissemination and implementation. 20  A further strength of the study was the contribution of researcher reflexivity. In an attempt to limit the impact of implicit assumptions on the interview process, no participants were working colleagues. The study was undertaken as part of a doctoral research project by LLP, a non-Singaporean. An initial concern centred on the possibility of researchers giving limited data to someone they might perceive as inexperienced and an outsider. In fact, participants gave very generously, with 13 of the interviews running over time. All of the interviewees commented that she was well positioned to critically evaluate the situation in a way that a Singaporean might not.

| Strengths and limitations of this study
In addition to detailed use of the contact summary forms and memo writing, this process of reflection also featured in analysis discussions with the other authors (HES and BB). The process informed both data collection (refining the topic guide) and analysis.
A further strength of this research is its contribution to the growing body of evidence calling for a radical re-thinking of how PPI can be integrated into research in ways that are meaningful and which also maximize its potential impact. [76][77][78] It also supports the argument for clarification on the relationship between PPI, research and research ethics.
Whilst the study includes a diverse range of participants, in terms of research experience, Singapore is itself unique in Asia. The findings from this study, therefore, require more detailed examination in the context of other Asian cultures. Finally, and most importantly, this study focuses only on the views of health researchers; further work is currently exploring the views of patients and the public.

| CON CLUS ION
The socio-political context of Singapore offers opportunities to trans-

ACK N OWLED G EM ENTS
We would like to thank the participants for their invaluable insights during the interviews. We also wish to acknowledge the detailed and constructive comments of the anonymous reviewers whose advice has greatly strengthened the final version for this paper and to thank them for their input. LLP is funded through the Singapore International Graduate Award (SINGA) doctoral scholarship programme.

CO N FLI C T O F I NTE R E S T
There was no financial support or other benefits from commercial sources for the work reported on in the manuscript, or any other financial interests that any of the authors may have, which could create a potential conflict of interest or the appearance of a conflict of interest with regard to the work.

DATA AVA I L A B I L I T Y
This study is not yet complete. Anonymized data will be made available at the university depository in line with best practice when study is completed and data are fully published.