Perspectives on public involvement in health research from Singapore: The potential of a supported group model of involvement

Abstract Background Singapore is an international research hub, with an emphasis on translational clinical research. Despite growing evidence of the positive impact of public involvement (PPI) in research, it remains rare in Singapore. Aims To investigate Singaporean public perspectives around the rationale, role and scope for being involved in health research To identify the potential, challenges, facilitators and strategies for implementing PPI in Singapore. Design Semi‐structured qualitative interviews with members of the public, analysed using thematic framework analysis. Results Twenty people participated. Four main themes emerged: potential benefits; challenges; facilitators; and strategies for implementation. Whilst initially unfamiliar with the concept, all interviewees recognized potential benefits for the research itself and those involved, including researchers. PPI was seen to offer opportunities for public empowerment and strengthening of relationships and understanding between the public, academics and health professionals, resulting in more impactful research. Challenges included a Singaporean culture of passive citizenship and an education system that inculcates deferential attitudes. Facilitators comprised demographic and cultural changes, including trends towards greater individual openness and community engagement. Implementation strategies included formal government policies promoting involvement and informal community‐based collaborative approaches. Conclusion Given the socio‐political framework in Singapore, a community‐based approach has potential to address challenges to PPI and maximize impact. Careful consideration needs to be given to issues of resource and support to enable members of the public to engage in culturally sensitive and meaningful ways that will deliver research best placed to effectively address patient needs.


| Patient and public involvement
In health research, public involvement (PPI) is defined as 'research being carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them'. 1 Promoting PPI in health research in Western countries began over two decades ago. 2,3 In the UK, PPI is now a required consideration for publicly funded health research studies, whilst in North America, Australia and some European countries such as Denmark and Spain, public engagement is strongly encouraged by research commissioners and national organizations. [3][4][5][6][7][8][9][10] An international network advocating for 'a world where patient and public involvement is an integral part of health research' was launched in late 2017 and has been joined by 240 organizations and individuals worldwide. 11 PPI can inform all aspects of research, from identifying and prioritizing questions through to design, data collection, analysis and dissemination. Patients have lived experiences of conditions and their treatments, and can comment on areas of uncertainty where research is needed. Patient input can thus help in asking patient-focused questions and engaging other patients. [12][13][14] There are ethical arguments underpinning PPI which suggest it can rebalance power, giving a voice to those whose knowledge is less heard in traditional academic and clinical settings, and providing new perspectives from the public as 'marginal knowers' and yet 'agents of knowledge', 15 (p233) who can share their expertise. A utilitarian argument has also been put forward [16][17][18][19] based on the premise that embedding the views and needs of patients in research is more likely to produce outcomes and interventions that will be implemented in policy and practice. 20 Involvement can also positively impact on both patients and researchers, increasing self-confidence, knowledge and skills. 2,[21][22][23] Despite these arguments for PPI, barriers exist to its implementation, such as potential conflicting agendas; challenges in power differentials; lack of time and resources; varying degrees of public awareness; researchers' attitudes and skills; lack of clear purpose, monitoring and evaluation; and wider research systems not supporting researchers' individual efforts to involve. 4,[24][25][26] On the other hand, the literature presents numerous facilitators, such as having clear objectives; establishing ground rules, training and support for all stakeholders; making PPI accessible to a diverse range of stakeholders; building trust; and highlighting the added value to and from those involved. 25-28

| The Singapore context
Founded in 1965, Singapore has a culture that privileges the collective rather than the individual experience. 29 The country has experienced immense economic and social change, rising from 'Third World' poverty 30 to being an 'Asian Tiger'. 31 It has a population that has doubled in 50 years and which is multi-ethnic, with four official languages, 32 with English promoted as the 'working language'. 33 Singapore prides itself on leading global rankings in education, 34 with a system structured to 'foster a sense of national identity' and Shared Values 29,[35][36][37] so as to promote unity within its diverse population. Singapore workers are amongst the hardest working in the world in terms of number of hours worked, 38 with implications in terms of leisure time and availability for volunteering.
Singapore is an international research hub, 39,40 but PPI in health research remains rare, with the public viewed largely as 'subjects' providing necessary data. 41 Singapore attracts globally renowned scholars and researchers, 39,40 and thus provides a useful case study for exploring the potential for PPI within an Asian, yet internationally diverse, context. This aims of this research were to investigate public perspectives on the rationale, role and scope for being involved in health research and to identify the potential challenges, facilitators and strategies for implementing PPI in Singapore.

| Recruitment
Participants were identified in two ways: through (a) local community groups and (b) participants in a previous study, 41 who were asked to invite potential participants to contact the researcher via telephone.
Four community groups (Council for Third Age, Alzheimer's Disease Association, Parkinson Society Singapore and Muscular Dystrophy Association Singapore) were selected due to their high level of activity and wide membership; they were contacted via email and telephone to organize a talk for its members and invite them to take part in this study, but none were interested in collaborating with this research.
Purposive (maximum variation) sampling was used to ensure a range of perspectives, ages and ethnic groups. 42,43,44 Members of the public over 21 who were not English speakers or who had a professional role in health care were excluded. Once face-to-face or telephone contact was made, participants were given information on the study and, if still agreeable, arrangements were made for an interview at a time and place convenient to them. As a token of appreciation, they received a SGD15 gift voucher.
Out of 45 members of the public contacted by LLP, all of them replied and 20 agreed to be interviewed. Saturation was reached after 15 interviews, but we continued to 20 to ensure a solid representation of all age and demographic groups.

K E Y W O R D S
Asia, attitudes, cultural contexts, health research, patients, PPI, public, public involvement, qualitative methods, qualitative research, research design, Singapore

| Data collection
Data were collected through face-to-face semi-structured interviews, designed to guide participants in reflecting on their experiences and views, and to enable them to produce their own narratives, privileging those issues most salient to them. 42,45,46 Interviews were conducted by LLP in July and August 2018.
The topic guide was informed by published literature on the scope and practice of PPI and was adapted iteratively to include emerging themes from the analysis. The initial version included participants' personal background, their views on research and its relevance and impact, their own experiences of research and their understanding of PPI, including how it might be operationalized locally. These broad topic areas were expanded in subsequent topic guides to explore emerging themes, particularly the opportunities and challenges of PPI involvement within the context of Singaporean identity and education, how PPI could be operationalized at each of the different stages in the research cycle and supporting researchers wishing to include PPI in their research.
Informed consent was obtained before the interview and confirmed again on completion. All interviews were audio-recorded, transcribed verbatim, cleaned and anonymized before analysis.

| Analysis
A structured thematic analysis 49,50 of the transcripts was undertaken in six stages (see Figure 1), supported by NVivo 10 data management and analysis software. 51 Analysis started with familiarization with the data (Stage 1). An exploratory framework was adopted using applied thematic analysis, with coding occurring in distinct stages beginning with each case before moving to a cross-case comparison and analysis (Stages 2-3). 50,52 Analysis thus progressed from initial descriptive codes (sub-themes) to interpretative theoretical constructs (main themes). 53 To ensure reliability, a process of inter-coder consensus was Despite English being the language of education in Singapore, Singaporeans commonly use fractured, ungrammatical English, locally known as Singlish. 54 Singlish is a cultural marker for many and F I G U R E 1 The six stages of coding has evolved due to the influence of the diverse dialects spoken locally. For clarity, the narratives reported in this paper have been linked together with pronouns and verbs using square brackets so that the quotes transpose to coherent written text. For example: 'I [would] go with anybody, helping; talking about this, that, every-thing… If there was someone to bring me out, chitchat with me, [it] would make me happy also'.
Detailed reflexive notes, in the form of contact summaries, 55 were made as soon as possible post-interview. The notes included observations about the quality of the interaction and any tensions, questions asked by the interviewee and unexpected themes that might warrant checking out in subsequent interviews. 56 The process of reflexivity continued during the analysis in the form of memos. 57,58 Incorporated into this was the process of bracketing, that is identifying and setting aside researchers' assumptions so as to limit in so far possible prejudices and assumptions that might influence interpretation of the data. 57,58 Analysis was iterative and concurrent with data collection, 59 repeatedly moving from the specific details of the data to abstract, theoretical constructions. 60 Data saturation was based on inductive thematic saturation within topics. 61

| Public involvement in this study
At the time of this study, there were no frameworks for PPI in Singapore. This study was intended to engage with members of the public to explore their views as a first step in addressing that gap. It was itself an extended PPI consultation. between the perspectives of those who had previous experience of PPI (who shared their experiences) and those who had never been involved in research (who shared their expectations). The only difference between the two types of interviewees was that those with experience of involvement were able to give details of how that had operationalized in reality.

| Themes
Four main themes emerged from these interviews: • potential benefits • challenges • facilitators • strategies for implementation.
Each of these themes is presented together with the sub-themes that structure them using illustrative quotations. Unique identifiers include participant number, age, gender and ethnicity, with previous experience of involvement in health research indicated by yes or no ('Y'/'N').

| Potential benefits of PPI
All interviewees recognized the potential benefits of PPI. These were structured around three sub-themes: positive impact on research, benefits for those involved and benefits for researchers.
Whilst people identified a number of challenges around motivation to be involved, all described it as a worthwhile exercise.

Positive impact on research
The first sub-theme was rooted in a realization of the need for including the perspectives of those whom the research is intended to help, that is patients and the public: 'It will move us forward, because after all research is meant for everyone, and not just researchers' Linked to this was its potential to strengthen research through community engagement, as this participant with previous experi- In terms of implementation, PPI was seen to have the potential to influence policy and service stakeholders who would be more responsive to recommendations from a study with public collabora-

| Challenges to PPI
Despite the potential benefits of PPI identified, interviewees also mentioned potential challenges. However, no concerns were raised over potential individual harm or risk. The challenges consisted of three sub-themes: pragmatic citizenship, the education system and deferential attitudes.

Pragmatic citizenship
Interviewees described their compatriots as predominantly pragmatic and passive in terms of social and community engagement:  The implications of such hierarchical positioning were intensified by the character trait of 'saving face' discussed above and were seen as a barrier to laypeople's genuine engagement with the research process:

| Facilitators for PPI in Singapore
Despite these challenges, interviewees also highlighted characteristics of Singapore society that could facilitate involvement locally.
These consisted of two sub-themes: the ageing population and cultural change.

The ageing population
Firstly, the rapidly ageing population was perceived as a potential

| Strategies for implementation
During the interviews, participants drew on their past experiences of campaigns driving changes in health care to suggest both formal and informal strategies to realize PPI in Singapore. A frequently cited example was the recent government-led initiative to address diabetes by involving communities and voluntary organizations 64 :

Formal strategies
Interviewees discussed the potential to introduce policies to promote PPI which, given the culture of deference, most interviewees However, linked to this there was some concern that a top-down approach would defeat the principle of empowerment inherent within PPI, particularly undermining the potential to identify research priorities, resulting in research questions that did not challenge existing policies and practices:

| Summary of findings
Findings from this study suggest that although laypeople in Singapore may be unfamiliar with the concept of PPI, once it was explained they recognized its potential benefits at both an individual and a societal level. PPI was thought to offer the potential to generate individual and collective empowerment and to build new relationships and trust between laypeople, academics and health professionals. Proposed challenges were seen as culturally rooted in the 'Asian mindset', because of social norms emphasizing a high degree of deference, an educational system resulting in high literacy and numeracy but low critical appraisal skills, and a society with a heavy emphasis on long-working hours to the detriment of community involvement. Nonetheless, interviewees noted current cultural shifts which could facilitate PPI adoption, including the revival of a 'kampung spirit' with its emphasis on community support and inclusion. Participants identified formal and informal implementation strategies, including government policies and incentives and awareness-raising campaigns at a community level.
However, PPI has been criticized for being dominated by topdown and expert-driven models 65 that do not address the power imbalance between professional and lay experts. 66-69 These concerns were reflected in the views of participants in this study, with concern that not all of the many approaches would yield participant empowerment or improving research. 70 35,37 intended to foster community cohesion, as well as reflecting the structure of Singaporean society. 29,78 Whilst the latter acknowledges the importance of expertise, the former emphasizes the importance of the state ('Nation before community and society above self') and communities ('Community support and respect for the individual'). 37 The model reflects three components or key players:  A further strength of the study was the contribution of researcher reflexivity. The use of the contact summary forms, memo writing and discussions with the other authors encouraged further reflection. This process informed both data collection (refining the topic guide) and analysis. The study was undertaken as part of a doctoral research project by LLP, a non-Singaporean. Initially, this led to concern that the public would be reluctant to share their views with someone perceived as an outsider. In fact, participants shared generously, often commenting that they felt less constrained talking to an outsider who might be better positioned to critically evaluate the situation in a way that a Singaporean might not. Consequently, being an outsider generated potentially richer data than might otherwise have been the case.

| Strengths and limitations of this study
In terms of limitations, this was a small exploratory study which showed no differences in attitudes across the ethnic groups included. More in-depth exploration of attitudes across a diverse range of ethnic populations is needed in order to fully understand the potential for PPI in Asia.

| CON CLUS ION
Our study concludes that whilst unaware of the concept of PPI, participants recognized its potential to increase impact and improve implementation of research findings into health care, as well as having direct personal benefits for engaged individuals. Interviewees noted challenges specific to the local context, particularly hierarchical power relationships between professionals and the public.
Facilitators included current demographics, cultural shifts and a tendency to comply with centralized initiatives, leaving room for both formal and informal PPI implementation strategies.
Findings suggest the need for a 'supported group model' of involvement. Such a model offers opportunities for partnership and collaboration framed within the socio-political context of Singapore, within which the principles of PPI resonate deeply with current community-based initiatives from diverse stakeholders, including the government. However, given the lack of familiarity amongst the public of research generally, and PPI specifically, a combination of formal and informal strategies will be required to raise awareness of the unique contribution such involvement makes to research. More research is needed to understand the motivators and barriers to involvement amongst diverse ethnic populations in Singapore and in Asia, and to identify culturally sensitive solutions. Finally, careful consideration needs to be given to issues of resource and support, both educationally and practically, so as to enable members of the public to engage with researchers in meaningful ways that will deliver research best placed to improve patient outcomes.

ACK N OWLED G EM ENTS
We would like to thank the participants for their invaluable and generous insights during the interviews.
LLP is funded through the NTU-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.

E TH I C S
The study was reviewed and approved by the University's Internal Review Board, April 2018.