Public involvement in the dissemination of the North West Coast Household Health Survey: Experiences and lessons of co‐producing research together

Abstract Background Engaging with the public is a key element of health research; however, little work has examined experiences of public involvement in research dissemination. The aim of this paper was to assess the extent of public involvement, experiences of public advisers and resulting changes in the dissemination of the North West Coast Household Health Survey (HHS). Methods Three writing groups allowed public advisers to contribute to the dissemination of the HHS. A public workshop was set up to aid the co‐production of the research evidence and discuss the experiences of public advisers involved with the survey in March 2018. A focus group with public advisers was conducted in August 2018 to understand their experiences of involvement. Data were analysed using thematic analysis and coded by two researchers. Writing groups are still on‐going. Results Fourteen public advisers contributed via three face‐to‐face writing groups, by actively interpreting findings and helping in the write‐up of research articles and by presenting talks at the public workshop. At the workshop, seven public advisors contributed to setting priorities for data analysis from the HHS. Five public advisers took part in the focus group, which highlighted that whilst public advisers were generally satisfied with their involvement, they would like to be involved in more activities. Conclusions Members of the public shaped the dissemination of evidence and provided guidance for future steps. Public advisers were mostly positive about their involvement in the dissemination of the HHS, but highlighted the need for more transparency and support from researchers.

neighbourhoods, the objective of the survey was to assess health inequalities and identify ways to improve suitable health-care access. Comprising two waves of data collection, the second wave was should feedback on the involvement to those who have contributed their time as public advisers to the research. These guidelines ensure that the input provided by the public closes in a full circle, so that public advisers also receive some benefits and feedback from the researchers to better understand how their input has impacted on the research. This paper had two aims: (a) to assess the extent of public involvement and (b) to explore the experiences of public advisers in the dissemination of the HHS. This was framed around the NIHR INVOLVE guidelines on public involvement 1 and by assessing the public advisers' opinions on their level of involvement via a focus group. To date, there is limited evidence on the level of involvement of members of the public specifically in the dissemination of research, as reports mostly focus on a project as a whole. 13 Involving the public in the dissemination of the results of this survey is vital to reach residents from both disadvantaged and relatively advantaged backgrounds, and thus help share knowledge and discuss how health inequalities could be reduced, which is a very important area of public involvement. 14

| Focus group
To gather the experiences of members of the public and their levels of satisfaction of involvement in the Healthcare Utilisation Group, a 1-hour focus group was held at the University of Liverpool. People were recruited via email from the list of public advisers involved in the Healthcare Utilisation Group, and five public advisers attended the focus group (three female and two male). Participants were asked in particular about their activities in the Healthcare Utilisation Group and about their positive and negative experiences so far. In addition, participants were asked about whether they had been given sufficient opportunities to be involved and asked for recommendations regarding how to increase their involvement and how to guide new public advisers into their role. The focus group was audio-recorded and subsequently transcribed, and data were analysed using thematic analysis 15 by two members of the research team (CG and SH), who had previously been trained in conducting qualitative analysis. Both researchers coded the data separately and subsequently generated final codes via discussion and agreed on main overarching themes.

| The extent of public involvement in the dissemination of the HHS
Members of the public were involved both in writing groups and in a public dissemination event as part of the dissemination of the HHS, to help shape the research reporting of findings from the NWC HHS.

| Shaping research in writing groups
In order to improve the structure of the dissemination, people were allocated into three writing groups, led by two research team members (CG and JD). Writing Group 1 focused on findings relating specifically to socio-economic factors, such as socio-economic predictors of Accident and Emergency attendance and social inequalities in serious infectious diseases. Writing Group 2 focused on findings relating to mental health, such as the links between primary care use and mental health and differences in treatment according to levels of disadvantage. Writing Group 3 focused on findings related to physical health, including co-morbidities and complex needs.

| Public workshop
To involve members of the public to a greater extent in the dissemination of the findings, we organized a co-production workshop comprising public advisers, partners from local authorities and NHS Trusts, as well as academics. In total, 21 participants attended the workshop, of which seven were public advisers. The aim of the workshop was to disseminate some of the current findings, jointly interpret some of these findings, set priorities and identify new analyses.
Some public advisers were from the neighbourhoods sampled in the research, which ensured that the research team accounted to the communities and neighbourhoods affected by the research. The objective of the workshop was twofold: the first was to disseminate the first wave of findings from the survey to a wider audience; the second was to ask attendees for their thoughts on strategies and topics to explore with the data and therefore raise the level of co-production of the dissemination of the findings.
To ensure that public advisers not only contributed to the dissemination event, but were also supported to form an active part of the event itself, one public adviser gave a talk about his experiences of being involved in the HHS. For this purpose, the public adviser was guided on how to give a presentation and ensure he felt confident in doing so.
At the workshop, people were provided with topics from the three writing groups (socio-economic factors, mental health and physical health) and asked to prioritize topics for dissemination, such as multiple high risk factors of A&E attendance and policy implications. In particular, attendees discussed and identified priorities first at their group tables, which was followed by a general discussion, in which all priorities were highlighted and discussed to establish the most important ones. Attendees were also asked to discuss future priorities of the collected data, which may have received little attention to date. Across all groups, attendees identified a list of topics that could either be explored with the existing data from Wave 1 of the survey or potentially should be addressed in future waves.
Some of the priority areas identified by the groups for analyses in- suggested to focus on physical health, as well as health inequalities as a general concept. By implementing these workshops, the public will not only to a greater extent be involved in co-producing research, but the workshops can also enable wider dissemination of findings to relevant stakeholders, such as local authorities and policymakers. Implementation in general was considered a high, but often neglected, priority in research. With some of the analyses currently on-going, and some of the first findings emerging, attendees of the workshop expressed a great desire to see changes in real life as a result of the survey findings. As part of this, it was important to prioritize interventions that had the potential to reduce health inequalities. Attendees pointed out that these changes may differ between different communities and neighbourhoods, so that implementation will need to be guided further by close co-production with local public advisers and relevant organizations. Whilst the CLAHRC NWC ensures that all findings are accessible and disseminated to the wider public, for example in the form of lay handouts and social media stories, attendees wanted the findings to have an impact on policy and to be implemented in their local neighbourhoods. In sum, there was a desire among attendees to find a better balance between understanding phenomena and focussing on implementation in communities.
To ensure transparency, attendees were informed of the outcomes of the workshop via email and were informed how their ideas and thoughts are being addressed in the next step of the survey.
By actively making changes to the dissemination of the HHS, their thoughts were respected.

| The experiences of public advisers in the dissemination of the HHS
At the focus group, public advisers shared their experiences of being involved in the dissemination of the HHS findings. All attendees were part of a writing group, and all had attended the workshop.
Overall, the focus group feedback suggested public advisors felt positive about their involvement. Three main themes emerged from the data analysis: developing new skills, need for support and guidance, and transparency in research.

| Developing new skills
Participants felt that being part of this group provided them with opportunities to develop new skills and strengthen their confidence.
As part of these new skills, being involved also supported people with potential language barriers to become more confident in using the English language, which showcases the aim of involving people from

| Need for support and guidance
Whilst the qualitative analysis suggested the overall experience of advisers was positive, public advisers expressed the need for better support at the beginning of their journey as a public adviser. In particular,

| Transparency in research
Along with better guidance from the beginning, public advisers would wish to see more transparency in the academics' approach to research and co-production and better communication of the objectives of the group and individual dissemination activities. Some public advisers felt unsure after some meetings why they had attended the meetings, and what benefits they have provided to the meeting: I think it would be nice if when we do these things that not only will (we say) 'this is the study' but it would be […] 'this is the objective', this is what we're trying to achieve overall and where this study will go towards working towards that objective do you understand.
(P1) I hope I had some useful input into that verbally but I must admit at times I do feel a little bit that I'm lost. (P5)

| D ISCUSS I ON
The aim of this paper was to evaluate both the extent of public involvement and experiences of public advisers in the dissemination of the HHS. Findings showed that public involvement was overall considered positive and beneficial to the overall dissemination, highlighting how public advisers felt supported and respected, and how researchers ensured accountability, transparency, responsiveness and diversity, where possible. We also learned several lessons from this work, which should be addressed to further improve the experiences of public advisers.
In light of the NIHR INVOLVE guidelines on public involvement, the dissemination of the HHS has and currently is incorporating many of the elements of good public involvement in its work. This includes being respectful with one another and enabling people from diverse backgrounds to become involved. A previous evaluation of public involvement in a large 5-year long research project has highlighted how important it is to have more social diversity within the public advisers. 16 Whilst we only had two public advisers from minority ethnic backgrounds, these public advisers have contributed significantly to shaping the dissemination to date. In future, we need to ensure to recruit more members of the public from diverse backgrounds.
Indeed, including people with different experiences and different backgrounds can help us better understand how to prioritize, conduct and disseminate research findings for different groups in everyday life.
Whilst training is provided to public advisers and they are thus England, suggesting that researchers need to provide more feedback to public advisers. 18 Therefore, we will be clearer about the objectives of meetings and activities from the beginning prior to the activity, so that public advisers can decide whether this is relevant to them.
Lastly, by addressing the expressed wishes for further support as well as the outcomes of the workshop and focusing on implementing the findings in the local communities, we aim to be responsive by taking action on public adviser recommendations, as well as take accountability and share our findings with those neighbourhoods that were involved in this research. This is an important step to avoid a tokenistic approach to public involvement, and instead work together with public advisers as equals as part of the research team, something that has often been criticized in previous public involvement activities across health research. 19 In particular, the workshop has provided several steps to be undertaken simultaneously. First, attendees recommended to hold a series of topic-specific workshops, such as on mental health, health-care utilization or hospital admissions. By holding further workshops and making these more accessible to those communities that were involved in the survey, we can increase the accountability of this survey. Second, the present research suggests we need to prioritize specific analyses as recommended by workshop attendees, particularly those focusing on mental health, which generated the most public interest. In line with these recommendations, we will be investigating new topics such as self-harm and will be implementing findings in practice to help reduce health inequalities. These changes to our dissemination and overall translation of evidence clearly showcase the positive impact that public involvement has had and is still having in the dissemination of the HHS, supporting previous evidence by public advisers on the impact and value of their public involvement in health research. 6 Moreover, this highlights the value of involving the public in order to reduce inequalities in health 14 and also their value in the implementation of the findings due to their knowledge of the local communities, which is corroborated by previous evidence. 20,21 As a result, one priority will be to accumulate all findings from a mental health perspective and draft a policy paper with guidelines for policy and potential pathways for implementation.
This study has some limitations. Whilst all public advisers who are part of the writing groups and who have attended the workshop were invited to attend the focus group, not all were able to attend.
Considering their different levels of involvements in the writing groups and for different analyses, not all public advisers attended the writing groups to which they were allocated regularly. Some only contributed in more specific analyses during team meetings due to time constraints. Therefore, findings on the experiences of public involvement in the dissemination of the HHS are limited to those public advisers who were frequent attendees of the writing groups and possibly more motivated. However, findings were not all positive and highlighted areas for improvement, indicating that focus group attendees highlighted a range of experiences.

| CON CLUS IONS
This present evaluation has successfully addressed the aim of evalu- to become involved, such as through writing groups and co-production workshops. It is hoped this work will improve research stemming from the HHS going forward and provide guidance to those co-producing research with members of the public.

ACK N OWLED G EM ENTS
We wish to thank all members of the public who have contributed to this research.

CO N FLI C T O F I NTE R E S T
There are no conflicts of interest.