How is knowledge shared in Public involvement? A qualitative study of involvement in a health technology assessment

Abstract Background Public involvement in research is seen as a quality marker by funders. To understand the process and impact of involvement, more in‐depth studies are needed on how members of the public contribute in meetings with researchers. Objectives This study aimed to observe and reflect on what is said by public advisers in involvement. We wanted to understand (a) what knowledge and experience is shared during research meetings, and (b) how this knowledge is shared with researchers. Methods Data were collected in November 2016 as part of the public involvement in a health technology assessment of lung cancer screening using low‐dose computed tomography. Three meetings were audio recorded and observed with the purpose of understanding how members of the public contributed during the meetings. Audio recordings were transcribed verbatim and data analysed using a thematic approach, with the coding framework developed inductively. We also included reflections from a community drop‐in session. Results Members of the public brought three different ‘sources’ of knowledge and experience to meetings with researchers: direct lived personal experience; learnt knowledge; and the experience and values of others. The data suggest that group settings allow for dynamic discussions and sharing of different types of knowledge. Conclusion Group‐based involvement meetings allow for the synergistic combination of individual knowledge and experience. This gives researchers a broader understanding of the topic, which can be the vehicle for patient impact on the research. A combination of group meeting and community drop‐in can enable more varied input into research planning and conduct.


| INTRODUC TI ON
Patient and public involvement is a broad term used to describe the involvement of patients, carers and members of the public in research decision-making and is distinct from that of participating as a subject who provides research data. It can be defined as research being carried out 'with' or 'by' members of the public, rather than 'to', 'about' or 'for' them. 1 In recent years, involvement of and collaboration with patients and members of the public is seen as a quality marker by research funders in the UK and elsewhere. Involvement is thought to lead to better quality research with more clinical relevance due to the inclusion of the unique perspective of patients and members of the public. [2][3][4][5][6] Involvement can happen in all stages of research, and patients and members of the public can have an advisory role, collaborate with researchers or control the research. 7,8 Despite increased attention to involvement of patients and the members of the public in research, little is known about how involvement works. More theoretical underpinning or conceptualization of involvement is needed. 9,10 Patient and public involvement can be justified on a democratic or ethical basis, or on the foundation that it improves the quality of research. 11,12 It is the latter justification which this article is anchored in. 13,14 Patients and members of the public are invited to the research space to provide 'lay' or 'experiential' knowledge. This knowledge is different to, as important as and complementary to, scientific or professional knowledge. 3,15,16 People's experiential knowledge can be multifaceted, gained from living with a health condition, experiencing health care or caring for someone with a condition, and complements the researchers' academic or scientific knowledge. 17 This 'experiential knowledge' can also relate to other aspects of life, such as being a parent, a smoker or unrelated professional experience. Proponents of patient and public involvement argue that this additional knowledge can create a more holistic understanding of complex health problems, thereby improving research relevance and validity. 18,19 Traditionally, experts were deemed experts due to their position, rank and education. 16 For example, medical doctors and professors are certified experts, because they have formal qualifications which certify their knowledge. Experiential expertise of patients does not carry this 'certification' but is no less important to research. One problem of extending the definition of expertise in this way relates to the question of how far one should go when opening up technical decision making to experts who are experts by experience rather than certification. 18 In the case of patient and public involvement, this particularly relates to the 'public' involvement. What is the naïve or lay perspective that we seek when inviting members of the public? What constitutes knowledge in patient and public involvement, and does knowledge equate to experience, and vice versa?
In the context of this paper, a member of the public was someone being a smoker or a family member of a smoker, as the HTA was about screening smokers for lung cancer. In addition, a member of the public is also someone who does not have the perspective of technical research knowledge. When involving members of the public researchers seek both knowledge gained from lived experience and lack of technical research knowledge.
A number of terms have been used to describe experiential knowledge, including 'lay beliefs' and 'lay knowledge'. They all characterize this knowledge as being rooted in everyday experiences of health and illness. Stacey preferred the term 'people knowledge', stating that its crucial characteristics are that it is informal, experiential and mostly unwritten. 20 Williams and Popay pointed out that lay knowledge provides an epistemological challenge to expert knowledge by challenging the impartiality of the latter, as well as a political challenge to the institutional power of medical knowledge. 21 Research about lay knowledge has demonstrated its role in understanding the meanings of illness, and in particular the impact of illness on everyday life, and the significance of symptoms and experiences for individuals. Williams and Popay (1994) identified four themes: the diversity of lay knowledge; its internal consistency and coherence despite its differences from medical knowledge; its biographical nature; and the fact that lay knowledge is culturally framed within certain shared systems of belief.
In relation to patient and public involvement, we might therefore expect diversity of responses linked to participants' diverse experiences and biographies, and some reference to shared understandings. We might also expect some challenges to researchers' assumptions about the nature of the problem, in this case smoking and lung cancer, and the best way to design screening programmes.

| AIM
This study investigated public involvement in research; specifically, what is said during involvement meetings and the interactions between meeting participants. Our primary aims were to understand: 1. What knowledge and experience was shared at research meetings and a community drop-in session.
2. How public advisors shared this experience with each other and with the researchers.
A secondary aim was to give a case example and description of how to involve members of the public in a health technology assessment.

| INVOLVEMENT CONTE X T
The practice of patient and public involvement is shaped by its context. Below we outline the context of this particular case of involvement in research.
Data for this research were collected during three group-based public involvement meetings (involvement format one) and one community drop-in session (involvement format two) to inform a health technology assessment (HTA) of screening for lung cancer using lowdose computed tomography. Public involvement for this project was initiated at the request of funders and aimed to help inform the systematic review protocol for the HTA, and to aid the HTA researchers' understanding of (a) important outcomes, particularly those relating to quality-of-life and (b) the broader social acceptability of such a screening programme. The involvement activity reported in this paper took place at the start of the research, to inform the review protocol and researchers' understanding of outcomes. There was additional involvement of one person in a larger stakeholder meeting later in the process which is not reported here.
The involvement plan was devised by four researchers. Two from the HTA team (LL and another researcher from this group) and two from a research team that regularly plans and facilitates involvement (EC and KL). After discussions, we decided to invite people who would be recipients of this screening programme if implemented, in particular current and past smokers aged 50 and over. The decision to involve current and ex-smokers rather than people who had a lung cancer diagnosis was taken, as they would be the target group of the potential screening programme.
The opportunity to inform this HTA on lung cancer screening was advertised to current and ex-smokers through research involvement groups at the university, newspaper adverts, posters at doctors' surgeries, and at a community centre situated locally in an area of deprivation (see Appendix S1). Two different involvement formats were used.

| Involvement format one (structured group meetings)
The format described below was used for three separate group meetings, each with the same structure. Two of these meetings were held at the university and one at a local community centre. All participants were reimbursed travel expenses and received a £25 thank you payment for their time.
No prior knowledge or understanding of research was required before the meeting. Each meeting lasted ~2 hours and began with giving each person, including the facilitators, the opportunity to introduce themselves and their background. This allowed the group to get to know each other and gave everyone a chance to speak early on. The meeting included an introductory session to explain health technology assessment, and two structured discussions on outcomes and possible barriers to attending screening. The introductory section of each meeting was facilitated by LL and involved a video explanation of 'what is a health technology assessment?' (https ://www.youtu be.com/watch ?v=mwQ VI RQ 2C4U) followed by an opportunity to ask questions of members of the lung cancer screening HTA team.
Next followed a structured discussion facilitated by KL to hear people's views on screening outcomes. Members of the public were encouraged to think about the impact that screening for lung cancer might have on their lives (both positive and negative). This was initially in pairs, using 'outcome stars' (see Figure 1, for example) with hypothetical situations of screening offered or not offered to current or ex-smokers over 50 years old, and followed by a whole group discussion where ideas were recorded on a whiteboard ( Figure 2). The combination of small and large group discussions was intended to encourage members of the public to contribute even if they were uncomfortable in larger groups, while also sharing views across the whole meeting.
Finally, members of the public were encouraged to discuss the perspective of smokers/ former smokers from deprived areas on the introduction of a lung cancer screening programme. Discussion was aided by using data from a qualitative interview study published in 2017. 22 LL facilitated discussions by presenting the findings of this study as visual models ( Figure 3). 23  The meetings included refreshments and where followed by lunch to allow discussion to continue in a more informal setting.

| Involvement format two (community drop in)
The second format of involvement took place at a community centre during a regular coffee morning, at a time when people collected food from a food bank located within the centre. The community centre is in a deprived residential area of a small city. Three of the researchers (LL from the HTA research team and KL and EC from the Involvement team) discussed lung cancer screening using low-dose CT one-to-one with members of the public coming to the coffee morning. Members of the public were invited to write their thoughts on post-its and stick them to a board. This allowed members of the public using the community centre to share their thoughts on outcomes, quality of life and social acceptability of lung cancer screening in a format that could later be shared with the wider HTA research team ( Figure 4). The discussions were intentionally informal, and the researchers were mindful of inviting comments and talk, but not pushing the topic on to anyone who preferred not to engage.

| Data collection
Ethical approval for the study was granted by the University of Exeter

| Participants
Group meeting 1: Nine people: members of an established involvement group. Ex-smokers and smokers, and some who had lost a family member to a smoking-related illness.
Group meeting 2: Five people: four members of the public who had responded to a call for involvement in this study in local newspapers or adverts in GP surgeries, and one member of an established involvement group. Ex-smokers and smokers, one of whom had also lost a close family member to a smoking-related illness.
Group meeting 3: Four people: three members of the public recruited through links with a local community centre and one member of an established involvement group. Ex-smokers and people who had lost family members to a smoking-related illness.
Collectively, we involved a total of 17 members of the public (11 female) all aged over 18 and mainly aged >40.

Format two, Community drop-in session:
The number of members of the public spoken to or who posted their views on the board were not formally recorded but included smokers, ex-smokers and never smokers.
Researchers: All researchers were non-smokers, but had experience of family members smoking and having smoking-related illness.

| Data analysis
All group meetings were audio recorded and transcribed verbatim.
Transcripts were anonymized using descriptive codes. EC transcribed audio recordings of meetings, which were checked by LL.
All data were imported to NVivo and analysed using this software

| FINDING S
The themes identified are discussed in more detail below and consist of: source of knowledge, how knowledge is shared, and group dynamics.

| Source of 'experiential knowledge'
The data describe three different 'sources' of knowledge that arose during the group discussions: direct lived personal experience; learnt knowledge; and the experience and values of others.
In patient and public involvement meetings, members of the public are usually invited due to their personal lived experiences of the research topic. This sharing of personal experience was noted in all three of the workshops we ran for this project. Members of the public shared very personal stories without undue prompting and seemed willing to do so, also in front of strangers.

| How content of knowledge was presented in meetings
The 'knowledge' shared during meetings was expressed in a variety of different ways from subtle hinting to being forthright and, occasionally, judgemental. Members of the public also shared knowledge based on reasoning derived from reflection on past experience relating to the topic. We found that on occasions participants would share a possibly controversial opinion in a subtle rather than upfront manner, hinting at a point and not necessarily taking ownership of it.

| Group dynamics
In the workshop-based meetings described here, group dynamics will play a part in whether members of the public feel able to express their views and experiences, and whether the HTA researchers feel the discussion is relevant to their work. The meetings that were part of this research were designed and facilitated with a set intention. Members of the public first worked in small groups on specific questions before they joined a discussion with the whole group. Participants were observed agreeing and supporting others' views when sharing personal experiences and knowledge. Female 11, ex-smoker: Yes, but it would be less of an impact than waiting until it was too late.

| Involvement methods
From a practical perspective, this paper illustrates two examples of how public involvement can be conducted to inform research.
Specifically, we describe a way of facilitating structured group discussions on outcomes in research by discussing impacts on day-today life in different scenarios (see Figures 1 and 2). In addition, we provide an example of a 'drop in' involvement session, which allows researchers to speak briefly to a variety of different people who might not want to attend a bespoke workshop, but welcome the opportunity to share views to influence research. As such, we add to a growing body of work that illustrates innovative ways of facilitating discussions on research and gaining input from members of the public. [26][27][28] The one-to-one approach at the community centre drop-in may have value beyond group discussion, allowing members of the public space to share more contested views and should be considered a useful addition to structured group-based involvement meetings.
The drop-in style involvement described here might also serve as an introduction to members of the public about what involvement is, and enable them to make an informed decision on whether they would like to be more involved in research. One of the members of the public at the drop-in later attended a group workshop and volunteered for future involvement in research based on these ex- periences. An additional value of the drop-in style session is that it allows for a more democratic oversight, allowing a wider and richer range of viewpoints to be added to the research process.
An important aspect of this is the facilitation and planning of the sessions. The team who were involved were a mix of researchers from the HTA team, and specialist patient and public involvement researchers who regularly support members of the public, patients and carers to be involved in research.

| Research findings
Our data highlight that individuals bring different types of knowl- In patient and public involvement, we often invite people to meetings based on relevant experience. In this project, for example, we invited members of the public who were present or past smokers, and some who had lost close family members to smoking. What we see is that members of the public bring more than this: they may wear multiple hats and bring different types of knowledge, such as something they have read, the opinion of a relative, or the experience of a relative as told and interpreted by themselves. The perspective they bring is not just simply that of a smoker but also of a smoker's 'child', a daughter-in-law, or a spouse. This suggests that the knowledge brought to research by patients and members of the public goes well beyond 'lived experiences' and 'naïve' perspectives.
It further suggests that it is important to be aware of the different roles people hold and to consider how members of the public are prepared for meetings with researchers. It is likely that the lived experience (in this instance smoking status) might also influence the content of health concerns shared in meetings.
Although we advocate for a variety of approaches to involvement, including one-to-one discussions, our findings suggest that group meetings between researchers and members of the public are important. This is particularly significant as meetings can enable discussion of a variety of perspectives and types of knowledge.
This is similar to that of focus group methodology which has been described as offering a platform for differing paradigms or worldviews. 31 Collectively, these findings highlight the importance of groupbased involvement meetings, where the collective voice is more than the sum of its parts, or as described by Aristotle 'A feast to which many contribute is better than a dinner provided out of a single purse' 38 ; people provide different pieces of knowledge which generate rounded discussions and may re-accentuate or emphasize prior understanding. Central to this suggestion of group understanding is the importance of facilitation and the influence of group dynamics and how this can influence the ways in which individuals share their knowledge and experience, allowing back and forth between people and space to listen and reflect. Planned and structured meetings allow for targeted discussions and activities designed to help sharing and mobilization of experiential knowledge within the group, and provide a safe space to challenge and discuss aspects of one's owns knowledge with others.

| Limitations
This study adds important empirical data to our understanding of patient and public involvement. However, we acknowledge that there are limitations to this work. Firstly, because this is one particular example of involvement which focuses on the early stage of research, we cannot explore knowledge contributions from members of the public over time. Second, although we present data collected in the meetings, we cannot fully assess the impact from involvement without interviewing the researchers involved. This would be an interesting avenue for future research, testing our theory of reworked understanding after meetings and the impact this has on research.

| CON CLUS ION
Findings from this study show the details of experiential knowledge conveyed during public involvement meetings and give an insight into how involvement 'works', by highlighting what we term hybrid understanding. From a practical perspective, we show the benefits of both group meetings and one-to-one discussions. We propose that group meetings allow for the synergistic combination of individual knowledge and experience, which has benefit above and beyond speaking to the same people on an individual basis. We also highlight the additional benefit and ease of 'drop in' one-to-one sessions, which can allow people to share more contested views, which can add value, especially for projects which may include diverging views.
We suggest the meeting facilitation is key in the running of involvement meetings, enabling and allowing for people to share openly and discuss with others. Finally, we suggest that impact from involvement is improved when researchers have direct conversations with those with relevant lived experience.

ACK N OWLED G EM ENTS
We are grateful to the public advisors who attended meetings at the university and those who engaged in conversations at the community centre. For reasons of anonymity, we do not name the centre, but we are grateful to the centre lead who allowed us access to speak with people there. This research was supported by the National Institute Hyde for his contributions to this work.

CO N FLI C T O F I NTE R E S T
None declared.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.