Our experience of piloting the PPI Hawker
The pilot PPI Hawker was held on November 8th, 2018, in Serangoon Gardens Market and Food Centre (Fig.1). It soon became apparent that inviting participants to join our table as they queued to buy themselves refreshments from the hawker stalls was not going to work (Fig.3). Everyone approached refused to join our table, but instead invited us to join theirs. After a quick discussion, we decided to approach people already sitting and asking if we could join their table. With this amendment, 28 members of the public participated, but all declined the offer of a free drink.
Our experience with the first PPI Hawker highlighted the need to be clearer when introducing PPI and describing the overall aim of the research study being discussed. The need for this information became apparent when members of the public initially misunderstood what they were being asked to do, thinking that we were seeking participants for the study. The public required sufficient background in order to meaningfully engage in the conversation. Therefore it was crucial to have one of the in a facilitating role to communicate information about the research project both to the public and other facilitators. Finally, it was helpful to work in pairs, with one person capturing all the insights shared by members of the public and the other focusing on the conversation. To increase the clarity and utility of the comments collected, we developed a coding system for future PPI Hawkers.
The conduct of two further PPI Hawkers
Our pilot involved mostly Chinese, so to achieve greater ethnic diversity the two subsequent PPI Hawkers were conducted in locations frequented by more Malay and Indian residents (Malay and Indian represent 13 and 9% of Singapore’s population respectively, 74% being Chinese (34)). With our revised method (Fig.3), we engaged a further forty-four members of the public (24 Indian, 13 Malay and 7 Chinese), in short conversations (around 15 minutes per table) sitting at 33 tables (16 in Admiralty and 17 in Tekka Centre).
We found the presence of the public facilitators was particularly helpful with developing trust, for example with the Indian population an introduction in Tamil defused feelings of being caught in an unfamiliar situation to inclusion in a conversation in which they were central.
Alongside positive aspects of the PPI Hawker, some negative views were also noted. Around a quarter of members of the public approached wanted to be left “alone”, others wished to discuss topics not related to the research study (e.g. digressing to complain about the government), but only one individual responded with some aggression, sharing their dogmatic beliefs about medicine. No offers of a drink were accepted, and occasionally a participant expressed offense when offered a free drink, as they saw it as too small a token of appreciation, because it was something that they could easily afford for themselves.
Achieving our goals
On evaluation the PPI Hawkers exceeded our predefined goals for feasibility, acceptability and utility. At each PPI Hawker more than twenty members of the public were engaged, and within each session at least ten individuals responded to each of the questions posed. The PPI Hawker concept was well received by the public; 75% of those approached at their tables agreed to engage in a conversation with us. We involved members of all three ethnic groups in Singapore and spoke to adults from a wide age range, confirming accessibility of the PPI Hawker.
Researchers’ feedback
The Steering Group’s response to the feedback from the public about their population-based study was encouraging, and they expressed the need to continue with the PPI Hawkers to also understand the views of populations from different neighbourhoods. The researcher involved as a facilitator commented on how “The public’s opinion are very diverse, and I learnt that if you spend the time to listen to public, there are many things that you can learn. People are generally willing to help, and their feedback will only make our research stronger!” With subsequent PPI Hawkers her appreciation of their value was strengthened by observing the hidden knowledge within different communities. She commented “An eye opener, certainly I could see the totally different perspective from those of lower socio-economic classes about research health screening”.
The discussion of the feedback from participants prompted refinements to the PPI Hawker including more consistency in the terminology used. For example, while some facilitators had used the word “confidentiality” others had used “anonymity” when discussing data sharing issues. This inconsistency made the PPI feedback less useful as it was not always possible to know which term the pubic were responding to. As a result, we agreed facilitator’s should only use the terminology on the cue cards and would always explain any technical terms before engaging in discussion.
Examples of how PPI impacted on the design of the population-based study can be found in the box 1 below.
Box 1: Impact of the PPI Hawkers on the study design
After the PPI Hawker Pilot, members of the Steering Group were receptive to the public’s suggestions to allay concerns about data security by sharing more information on how participant data is stored and by requesting additional consent for data sharing with commercial collaborators (Question 1), to consider how the research data could be incorporated into the individual’s health records (Question 2) and to regularly update participants on the study’s progress (Question 3).
After the two subsequent PPI Hawkers researchers introduced a number of changes to the research process supported by the public’s comments. Researchers are seeking to establish new recruitment strategies, by formalising agreements with various employers (Question 1) and are setting up a community Advisory Group that could provide regular advice on issues that can’t be discussed in the context of the PPI Hawker (Question 3). Changes also included amendments to the informed consent form, giving research participants the choice of who their data could be shared with in the future without the need to recontact them (Question 2). There were four categories to select from; (i) Universities/ academic institutions, (ii) Health institutions, (iii) Government institutions and (iv) Commercial bodies. The amended consent also includes an improved explanation of incidental findings using simple terms, detailing the pros and cons, and giving participants the option to decide whether they would like to have their incidental findings communicated to them (Question 4).
The public’s perspective of the PPI Hawker
From the public’s feedback the opportunity to take part in the PPI Hawker conversations was appreciated. Most members of the public we spoke to were “happy to give [us their] opinion”. Participants enjoyed “feeling helpful” contributing to something that would benefit their community. They felt that by meeting in the familiar space of the hawker centres, researchers lost “their authoritarian attitude”. Moreover, they recognised that “researchers don’t know [our needs and wants], we have to tell them”. The format of the PPI Hawker as an involvement method for Singaporeans was widely supported; participants valued its concise and one-off nature, because of the pressures on their time and no wish to talk about research on a regular basis. One member of the public finished their conversation with us by thanking us for meeting the public: “You are doing a very good thing for people [coming to ask for people’s perspectives at the hawker centre]. I have to appreciate”.
PPI facilitator’s experience
Facilitators observed how the informal setting allowed members of the public to talk openly and freely and share personal experiences. This relaxed environment allowed us to approach audiences unfamiliar with research, where they felt able to comment freely and also ask questions on topics beyond those proposed by the researchers. Facilitators were encouraged by their experiences of the PPI Hawkers, and highlighted the feasibility and accessibility of this method of involvement in the Singaporean context.
The reflexive notes of the coordinator captured how the degree of engagement exceeded her expectations:
“I was surprised by how most people were receptive and keen to discuss the project with us. Singaporeans are often zealous in the protection of their privacy and are reluctant to share their opinions. However, those we interacted with were willing to talk at length about the issues, curious about the research, and seemed to enjoy the experience” (LLP).
One of the public facilitators recorded their observations of how the public’s initial hesitancy to be involved was quickly transformed into engagement:
“People were apprehensive when we first approached them (like we were going to sell something/ask them for something/like we were disturbing quiet, family time) but once it was clear we just wanted their OPINIONS, the conversation flowed quite effortlessly. I was surprised to see them have so much to say, so much to contribute to each of the questions asked. The public are not as oblivious or ill-informed as some may think, they may not be researchers but everything that was said made perfect sense and was of great value. We could not have predicted those responses or gotten a more honest feel for their perception of research in general or the barriers and facilitators to research if we did not sit down and talk to them in person, in a natural setting as we did today.” (Public facilitator, reflecting on sessions #2 and #3)