{"id":1579,"date":"2023-02-15T09:10:48","date_gmt":"2023-02-15T09:10:48","guid":{"rendered":"https:\/\/blogs.imperial.ac.uk\/perc\/?p=1579"},"modified":"2023-02-15T09:47:16","modified_gmt":"2023-02-15T09:47:16","slug":"bringing-together-experts-in-public-involvement-researchers-public-partners-and-the-public-to-improve-early-stage-research-projects","status":"publish","type":"post","link":"https:\/\/blogs.imperial.ac.uk\/perc\/2023\/02\/15\/bringing-together-experts-in-public-involvement-researchers-public-partners-and-the-public-to-improve-early-stage-research-projects\/","title":{"rendered":"Bringing together experts in public involvement, researchers, public partners, and the public to improve early-stage research projects"},"content":{"rendered":"<div class=\"pps-series-post-details pps-series-post-details-variant-classic pps-series-post-details-1868\" data-series-id=\"311070\"><div class=\"pps-series-meta-content\"><div class=\"pps-series-meta-text\">This entry is part 10 of 11 in the series <a href=\"https:\/\/blogs.imperial.ac.uk\/perc\/series\/peoples-research-cafe-at-the-exhibition-road-festival-2022\/\">People&#039;s Research Cafe at the Great Exhibition Road Festival 2022<\/a><\/div><\/div><\/div><div class=\"fcbkbttn_buttons_block\" id=\"fcbkbttn_left\"><div class=\"fcbkbttn_button\">\n\t\t\t\t\t<a href=\"https:\/\/www.facebook.com\/\" target=\"_blank\">\n\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/blogs.imperial.ac.uk\/perc\/wp-content\/plugins\/facebook-button-plugin\/images\/standard-facebook-ico.png\" alt=\"Fb-Button\" \/>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div><div class=\"fcbkbttn_like \"><fb:like href=\"https:\/\/blogs.imperial.ac.uk\/perc\/2023\/02\/15\/bringing-together-experts-in-public-involvement-researchers-public-partners-and-the-public-to-improve-early-stage-research-projects\/\" action=\"like\" colorscheme=\"light\" layout=\"standard\"  width=\"225px\" size=\"small\"><\/fb:like><\/div><\/div><p><em>This blog is part of a series showcasing the People\u2019s Research Cafe which took place on the 18th and 19th June 2022 in South Kensington, London as part of the <a href=\"https:\/\/www.greatexhibitionroadfestival.co.uk\/\" target=\"_blank\" rel=\"noopener\">Great Exhibition Road Festival<\/a>.<\/em><\/p>\n<p><strong>What is a People\u2019s Research Caf\u00e9?<img loading=\"lazy\" decoding=\"async\" width=\"219\" height=\"300\" class=\" wp-image-1509 alignleft loaded loaded loaded\" src=\"https:\/\/blogs.imperial.ac.uk\/perc\/files\/2022\/09\/6-219x300.jpg\" alt=\"\" \/><\/strong><\/p>\n<p>The People\u2019s Research Cafe is a caf\u00e9 with a twist. Visitors are welcomed to sit down at a table co-hosted by an Imperial College researcher and a public contributor whose role is to help the conversation flow freely. Over a free hot drink, visitors find out about the researcher\u2019s project and will be asked for their opinions on it. The researchers are then expected to use this feedback from visitors to improve their projects. The People\u2019s Research Caf\u00e9 has been run previously at two Imperial Festivals (2018 and 2019) and also in four community venues. It was previously called the \u201cPPI Caf\u00e9\u201d and you can read about the one at the Imperial Festival 2018\u00a0<a href=\"https:\/\/imperialbrc.nihr.ac.uk\/2018\/06\/15\/the-ppi-cafe-open-for-ideas\/\" target=\"_blank\" rel=\"noopener\">here<\/a>.<\/p>\n<p><strong>When did this People\u2019s Research Caf\u00e9 take place?<\/strong><\/p>\n<p>A\u00a0<a href=\"https:\/\/www.greatexhibitionroadfestival.co.uk\/event\/peoples-research-cafe\/\" target=\"_blank\" rel=\"noopener\">People\u2019s Research Caf\u00e9 was hosted at the Great Exhibition Road Festival held on 18 and 19 June 2022<\/a> and was a collaboration between the following teams\/centres: Imperial Biomedical Research Centre, Imperial Clinical Trials Unit, Imperial Clinical Research Facility, London In-Vitro Diagnostics Cooperative, North West London Applied Research Collaboration, MRC Centre for Environmental and Health, HPRU in Healthcare Associated Infections and Antimicrobial Resistance. Researchers from each centre were given the opportunity to apply to host a table at the Caf\u00e9 for 2 hours where they would explain their research in plain language and ask visitors 3 questions with the help of a public contributor. It was a requirement that the research project was at a stage where visitor feedback could still influence the project. Researchers and public contributors were offered training about how the Caf\u00e9 would work and how to maximise conversations with visitors. Ahead of the Caf\u00e9, researchers refined their plain language summaries and three questions to pose to visitors with the help of public involvement leads and a public contributor.<\/p>\n<p>&nbsp;<\/p>\n<hr \/>\n<p><strong>In conversation with<\/strong>:<\/p>\n<ul>\n<li>Keitumetse-Kabelo Murray, Patient and Public Involvement Manager, <a href=\"https:\/\/www.arc-nwl.nihr.ac.uk\/research\/patient-public-community-engagement-and-involvement\" target=\"_blank\" rel=\"noopener\">ARC NWL Patient, Public Community Engagement and Involvement\u00a0<\/a><\/li>\n<li><a href=\"https:\/\/www.imperial.ac.uk\/people\/k.foley\" target=\"_blank\" rel=\"noopener\">Kimberley Foley<\/a>, Research Associate, <a href=\"https:\/\/www.arc-nwl.nihr.ac.uk\/research\/child-population-health\" target=\"_blank\" rel=\"noopener\">ARC NWL Child Population Health, Department of Primary Care and Public Health<\/a><\/li>\n<li>Barrie Newton, Public contributor<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p><strong>Kabelo, as an expert on Patient and Public Involvement and Engagement how would you describe PPIE and the importance of its role in research?<\/strong><strong>\u00a0<\/strong><\/p>\n<p>\u201cPatient and Public Involvement and Engagement\u201d (PPIE) is, perhaps, an overly complicated term for a straightforward concept. The National Institute for Health Research defines PPIE as \u201c&#8230;conducting research \u2018with\u2019 and not research \u2018on\u2019 patients and members of the public.\u201d The term itself is a perfect example of how research and the Academy (the broader academic world) create structures that are inaccessible to those who are often the \u2018main characters\u2019 in a piece of research. The aim of PPIE is to engage and include patients and members of the public to create and own knowledge, but the term doesn\u2019t encompass its core values of inclusion, the rebalancing of power, accessibility and representation.<\/p>\n<p>At its core, PPIE is a tool through which we bring those who have lived experience to the centre of \u00a0the research we conduct to understand that lived experience. Effectively, PPIE is providing a platform for \u2018the main characters\u2019 to write their own lines, about their own lives, in the way that they want. PPIE focuses on letting those who live a story, tell that story. In doing this, we create space for this story to be told with greater empathy, understanding and perspective while also encouraging rigour and accuracy &#8211; key aspects to quality research.<\/p>\n<p><img decoding=\"async\" class=\"alignleft wp-image-1580\" src=\"https:\/\/blogs.imperial.ac.uk\/perc\/files\/2023\/01\/973c2b35-b588-4f8b-a788-5b0b8c182b01-e1673626953125.jpg\" alt=\"\" \/><\/p>\n<p><strong>What were each of your roles at the People\u2019s Research Cafe?<\/strong><\/p>\n<p><u>Kabelo:<\/u> At the People\u2019s Research Caf\u00e9 I would approach members of the public and begin engaging with them about Cafe, PPIE and why these approaches were important (both to the researcher and the public). This would lead into discussions on\u00a0what the researchers were aiming to do, the research projects that were available as well as what personal interests the members of the public had. This initial engagement enabled me to best pair up the members of the public with a research team and I would then invite them into the\u00a0People\u2019s Research Cafe and introduce them to the team. This demonstrates a snapshot of how PPIE interacts on a small scale while still having significant engagement and lasting impact. Through the People\u2019s Research Cafe we were able to bring members of the public <em>into <\/em>the research and thus partially bridging the gap between researchers and patients.<\/p>\n<p><u>Kim:<\/u> I brought a research project to the People\u2019s Research Caf\u00e9 for discussion with public visitors.<\/p>\n<p><u>Barrie: <\/u>As a lay person, with no background in any kind of science, I was very pleased to join in the Research Caf\u00e9 and to support the researchers as they involved members of the general public in their projects. I saw myself as a link between the researchers and those who dropped in for a coffee and a chance to discuss research projects at first hand. I introduced the researchers by name and invited them to explain to the visitors (a) what their project was aiming to do and (b) how the visitors could give practical help. My aim was to keep the conversation going and also to keep it \u201con track\u201d, as some visitors had specific general questions which didn\u2019t actually relate to the projects under discussion. I also encouraged the visitors to comment on specific issues raised by the researchers and, where appropriate, to list the issues in order of importance.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Kim<\/strong><strong>, <\/strong><strong>what research project did you bring to the People\u2019s Research Caf\u00e9 and what is it about?<\/strong><\/p>\n<p>I brought my project examining the impact of covid-19 pandemic lockdowns on children\u2019s respiratory (throat, lung and airway) infections to the People\u2019s Research Caf\u00e9. The pandemic lockdowns, although intended to reduce the spread of covid-19 infections, also reduced the spreading of other viruses that cause respiratory infections. We are planning to use electronic health care records from GP practices in England to look at the impact of covid-19 pandemic lockdowns on children\u2019s respiratory infections and I was very interested in hearing about children\u2019s experiences during lockdown from parents\/carers. Previous reports showed that children\u2019s respiratory infections greatly decreased during lockdown, and we predicted that this may impact on their future health, but there were many different research questions we were considering exploring. I wanted to hear from parents\/carers and other members of the public about what mattered most to them in relation to my proposed plans and to gather their views on the importance of my research questions.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>What questions did you ask visitors to the People\u2019s Research Caf\u00e9 about your project?<\/strong><\/p>\n<p>First, I asked about the visitor\u2019s (or their children\u2019s) experiences with respiratory infections during lockdown and whether this changed as restrictions decreased. Then, I asked about what they were most interested in learning from our research project by presenting four possible areas and asking them to discuss and vote for the one they were most interested in:<\/p>\n<ol>\n<li>Whether the types of throat, lung and airway infections children got in 2020\/2021 has changed from previous years?<\/li>\n<li>Whether the infections children got in 2020\/2021 were more serious than they were before?<\/li>\n<li>Whether the number and types of throat, lung and airway infections children got was different for babies born in March 2020, but then things returned to \u201cnormal\u201d in their second year of life?<\/li>\n<li>Following these children to see what happens with their health as they get older?<\/li>\n<\/ol>\n<p>Finally, I asked for their views on the importance of this research topic.<\/p>\n<p><strong>What did visitors tell you?<\/strong><\/p>\n<p>Visitors told me of their experiences during lockdown. Those who had their own children felt that the information we provided in the introduction to our project reflected their experiences; that children did not get respiratory infections during lockdowns, but this changed when lockdown eased (especially when children returned to school\/nurseries).<\/p>\n<p>We discussed what they were most interested in learning from this research project by reviewing the 4 possible research areas:<\/p>\n<p><em>1. Whether the types of throat, lung and airway infections children got in 2020\/2021 has changed from previous years?<\/em><\/p>\n<p><em>2. Whether the infections children got in 2020\/2021 were more serious than they were before?<\/em><\/p>\n<p>The visitors were generally not interested in learning about whether the usual types of respiratory infections in early childhood had changed before\/after pandemic lockdowns, but many expressed interest in knowing whether the severity of infections had changed.<\/p>\n<p><em>3. Whether the number and types of throat, lung and airway infections children got was different for babies born in March 2020, but then things returned to \u201cnormal\u201d in their second year of life?<\/em><\/p>\n<p>Some visitors were also very interested in learning about whether children born during the pandemic lockdowns who may have missed out on some of the typical respiratory infections would \u201ccatch up\u201d on these later. However, some of the visitors felt this was not a topic of interest as it was clear to them this is what occurred with their children or children they knew \u2013 they felt things had returned to \u201cnormal\u201d in terms of patterns for respiratory infections in early childhood so they didn\u2019t feel that this was something of importance to study.<\/p>\n<p><em>4. Following these children to see what happens with their health as they get older?<\/em><\/p>\n<p>Most visitors felt this was a very important area to study. Parents\/carers and other visitors expressed concern about whether the pandemic lockdowns and possible changes in the frequency and timing of respiratory illnesses may affect children\u2019s future health.<\/p>\n<p>The discussions at the People\u2019s Research Caf\u00e9 confirmed for me the importance of this research question, and also confirmed the critical importance of explaining to the public, \u201cwhy does this matter?\u201d In answering the third question, many visitors discussed how lockdowns due to the covid-19 pandemic are hopefully a thing of the past, so they wanted to know how our research about the impact of covid-19 affect how things are done in future.<\/p>\n<p>Barrie\u2019s contributions to this part of the discussion were extremely helpful in terms of engaging the public visitors and he would ask important questions to help assist in translating my scientific language into more appropriate lay language for the public.<\/p>\n<figure id=\"attachment_1581\" aria-describedby=\"caption-attachment-1581\" style=\"width: 519px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" class=\"wp-image-1581\" src=\"https:\/\/blogs.imperial.ac.uk\/perc\/files\/2023\/01\/Barrie.jpg\" alt=\"\" \/><figcaption id=\"caption-attachment-1581\" class=\"wp-caption-text\">Member of the public and Barriediscussing the research project at the People&#8217;s Research Cafe<\/figcaption><\/figure>\n<p><strong>How will what visitors told you impact and\/or change your project?<\/strong><\/p>\n<p>Our discussions around the different possible research questions have allowed me to prioritize what I will explore first in this research project. The public also expressed great interest in following this group of children forward to see the potential impact on their future health, which is something I was already interested in doing, but this helps motivate me to pursue it further as it matters to the public.<\/p>\n<p>The discussions with the public about \u201cwhy does this matter?\u201d were very useful to me as a researcher. In the initial development of my project I had similar questions about what the expected impact\/value of this work might be. The conversations with the public helped to strengthen and clarify my arguments and thinking around this.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>What was your personal experience of taking part in the People\u2019s Research Caf\u00e9?<\/strong><\/p>\n<p><u>Kim<\/u>: This was a fantastic event. In a two hour \u201ccafe shift\u201d I was able to get an incredible amount of public involvement and engagement on my project. The views from the public have helped me refine my plans for the study and through our discussions, I was able to refine my thinking and better communicate the importance and relevance of my work to the public. I would highly recommend this event to other researchers in future!<\/p>\n<p><u>Barrie: <\/u>I found the whole experience enjoyable. It\u2019s always stimulating to listen to others talking about what interests them, especially when I knew nothing about the subjects in advance. I think the presence of a \u201clay contributor\u201d encouraged the visitors to share their views and to understand that there are no \u201csilly questions\u201d in a situation like this. Both sides were learning.<\/p>\n<p>Of course, these sessions help scientists to understand which kinds of research are seen by the general public as valuable.<\/p>\n<p>Finally, I realise the importance of research, especially in healthcare, and I felt privileged to be playing a (very) small part in helping to advance the knowledge in this area.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Kabelo\u2019s reflections on the People\u2019s Research Cafe<\/strong><\/p>\n<p>The People\u2019s Research Caf\u00e9 facilitated essential characteristics of a co-produced approach to research. The NIHR defines co-production as the sharing of power in research through the development of relationships that are built on mutual trust, transparency and the acknowledgement of contributions \u2013 all of which were utilised and encouraged in our expression of the People\u2019s Research Caf\u00e9. The People\u2019s Research Caf\u00e9 demonstrates how these principles can be held at the center of a research programme while simultaneously enhancing the quality of the research as well as building relationships thus lessening the distance and differences between researchers and participants\/members of the public.<\/p>\n<p>We are observing a shift towards more researchers using PPIE as a model for building research projects, more and more communities are formalising their own understanding of their lived experiences through conducting their own research and more funding is being directed towards these types of projects. These are positive shifts that both feed into and demonstrate the process of breaking down the hierarchies of power that have kept the Academy and the public separate. Through the People\u2019s Research Caf\u00e9 we are able to demonstrate a movement towards a research culture that favours co-production as a model of connection and understanding.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"pps-series-post-details pps-series-post-details-variant-classic pps-series-post-details-1868 pps-series-meta-excerpt\" data-series-id=\"311070\"><div class=\"pps-series-meta-content\"><div class=\"pps-series-meta-text\">This entry is part 10 of 11 in the series <a href=\"https:\/\/blogs.imperial.ac.uk\/perc\/series\/peoples-research-cafe-at-the-exhibition-road-festival-2022\/\">People&#039;s Research Cafe at the Great Exhibition Road Festival 2022<\/a><\/div><\/div><\/div><p>This blog is part of a series showcasing the People\u2019s Research Cafe which took place on the 18th and 19th June 2022 in South Kensington, London as part of the Great Exhibition Road Festival. What is a People\u2019s Research Caf\u00e9? The People\u2019s Research Cafe is a caf\u00e9 with a twist. Visitors are welcomed to sit [&hellip;]<\/p>\n","protected":false},"author":1537,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"footnotes":""},"categories":[297776],"tags":[209562,269976,274465,269966,274462,269993,3202,86540],"series":[311070],"class_list":["post-1579","post","type-post","status-publish","format-standard","hentry","category-reflections","tag-child-health","tag-community-involvement","tag-covid-19","tag-designing-research","tag-digital-health","tag-early-involvement","tag-public-engagement","tag-public-involvement","series-peoples-research-cafe-at-the-exhibition-road-festival-2022"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Bringing together experts in public involvement, researchers, public partners, and the public to improve early-stage research projects - Patient Experience Research Centre<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Bringing together experts in public involvement, researchers, public partners, and the public to improve early-stage research projects - Patient Experience Research Centre\" \/>\n<meta property=\"og:description\" content=\"This blog is part of a series showcasing the People\u2019s Research Cafe which took place on the 18th and 19th June 2022 in South Kensington, London as part of the Great Exhibition Road Festival. What is a People\u2019s Research Caf\u00e9? The People\u2019s Research Cafe is a caf\u00e9 with a twist. 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