{"id":1461,"date":"2022-08-05T14:42:42","date_gmt":"2022-08-05T14:42:42","guid":{"rendered":"https:\/\/blogs.imperial.ac.uk\/perc\/?p=1461"},"modified":"2022-09-01T09:52:25","modified_gmt":"2022-09-01T09:52:25","slug":"hiv-co-production-showcase-sharing-learnings-from-a-participatory-research-project-part-2","status":"publish","type":"post","link":"https:\/\/blogs.imperial.ac.uk\/perc\/2022\/08\/05\/hiv-co-production-showcase-sharing-learnings-from-a-participatory-research-project-part-2\/","title":{"rendered":"HIV Co-Production Showcase: Sharing learnings from a participatory research project (Part 2)"},"content":{"rendered":"<div class=\"pps-series-post-details pps-series-post-details-variant-classic pps-series-post-details-1868\" data-series-id=\"311069\"><div class=\"pps-series-meta-content\"><div class=\"pps-series-meta-text\">This entry is part 2 of 2 in the series <a href=\"https:\/\/blogs.imperial.ac.uk\/perc\/series\/hiv-co-production\/\">HIV Co-Production<\/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\/2022\/08\/05\/hiv-co-production-showcase-sharing-learnings-from-a-participatory-research-project-part-2\/\" action=\"like\" colorscheme=\"light\" layout=\"standard\"  width=\"225px\" size=\"small\"><\/fb:like><\/div><\/div><p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1114\" class=\"size-full wp-image-1473 aligncenter\" src=\"https:\/\/blogs.imperial.ac.uk\/perc\/files\/2022\/08\/HIV-CoPro-Event-Visual-Notes-scaled.jpg\" alt=\"\" \/><\/p>\n<p>On Wednesday 6 July 2022, 25 stakeholders met at <a href=\"https:\/\/www.liftislington.org.uk\/\">Lift, Islington<\/a> (a community venue) to reflect, create and share ideas together as a group about co-producing HIV research using the example of a recent participatory project exploring the impact of COVID-19 on people living with HIV in the UK<\/p>\n<p>The showcase event was co-designed to be interactive and participatory in nature (after all, we wanted to showcase how valuable these approaches can be to research!). You can find out \u00a0more about how we co-designed the day in our <a href=\"https:\/\/blogs.imperial.ac.uk\/perc\/2022\/07\/06\/hiv-co-production-showcase-sharing-learnings-from-a-participatory-research-project-part-1\/\">previous blog<\/a>.<\/p>\n<p>The day started with an icebreaker over a networking lunch \u2013 we chose \u201chuman bingo\u201d where each person is given a card (see picture below) and asked to find someone in the room who corresponds to a statement on the card. We opted for a mixture of \u201cresearch related\u201d and more informal statements which would act as conversation starters and would also help attendees to get a sense of who else was in the room.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" width=\"694\" height=\"982\" class=\" wp-image-1465 aligncenter\" src=\"https:\/\/blogs.imperial.ac.uk\/perc\/files\/2022\/08\/Bingo-card.png\" alt=\"\" \/><\/p>\n<p>After lunch and the icebreaker, we then moved on to presentations on our participatory research project approach, findings and reflections alongside more creative activities.<\/p>\n<p><strong><em><u>Drawing concepts \u2013 what does co-research mean to you?<\/u><\/em><\/strong><\/p>\n<p>The activity was designed to get people to meet others on their table and get them talking. We asked each table to discuss and draw <em>\u201cwhat co-research means to you\u201d<\/em>. Each table was then asked to present back their ideas in 60 seconds. We adapted this activity based on the IIED Participatory Learning and Action Trainer\u2019s Guide (<a href=\"https:\/\/books.google.co.uk\/books?id=uu-BPsudVogC&amp;dq=IIED+Participatory+Learning+and+Action+Trainer%E2%80%99s+Guide+&amp;lr=&amp;source=gbs_navlinks_s\" target=\"_blank\" rel=\"noopener\">Pretty et al., 1995; p139<\/a>)<\/p>\n<p>We heard a range of descriptions about what co-research meant to them across the groups, including.<\/p>\n<p class=\"jetpack-slideshow-noscript robots-nocontent\">This slideshow requires JavaScript.<\/p><div id=\"gallery-1461-1-slideshow\" class=\"jetpack-slideshow-window jetpack-slideshow jetpack-slideshow-black\" data-trans=\"fade\" data-autostart=\"1\" data-gallery=\"[{&quot;src&quot;:&quot;https:\\\/\\\/blogs.imperial.ac.uk\\\/perc\\\/files\\\/2022\\\/08\\\/PXL_20220706_154334457-1024x768.jpg&quot;,&quot;id&quot;:&quot;1477&quot;,&quot;title&quot;:&quot;PXL_20220706_154334457&quot;,&quot;alt&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;itemprop&quot;:&quot;image&quot;},{&quot;src&quot;:&quot;https:\\\/\\\/blogs.imperial.ac.uk\\\/perc\\\/files\\\/2022\\\/08\\\/PXL_20220706_154340222-1024x768.jpg&quot;,&quot;id&quot;:&quot;1478&quot;,&quot;title&quot;:&quot;PXL_20220706_154340222&quot;,&quot;alt&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;itemprop&quot;:&quot;image&quot;},{&quot;src&quot;:&quot;https:\\\/\\\/blogs.imperial.ac.uk\\\/perc\\\/files\\\/2022\\\/08\\\/PXL_20220706_154346511-768x1024.jpg&quot;,&quot;id&quot;:&quot;1479&quot;,&quot;title&quot;:&quot;PXL_20220706_154346511&quot;,&quot;alt&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;itemprop&quot;:&quot;image&quot;},{&quot;src&quot;:&quot;https:\\\/\\\/blogs.imperial.ac.uk\\\/perc\\\/files\\\/2022\\\/08\\\/PXL_20220706_154350871-1024x768.jpg&quot;,&quot;id&quot;:&quot;1480&quot;,&quot;title&quot;:&quot;PXL_20220706_154350871&quot;,&quot;alt&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;itemprop&quot;:&quot;image&quot;}]\" itemscope itemtype=\"https:\/\/schema.org\/ImageGallery\"><\/div>\n<p>&nbsp;<\/p>\n<p>Co-research means:<\/p>\n<ul>\n<li><strong>Diversity, meaningful involvement and participation<\/strong> \u2013 everyone is able to participate in a way where <strong>power <\/strong>is shared\/disrupted\n<ul>\n<li>Although this is influenced by the current structure of research funding and it is not always easy to have equal power) <strong>&#8211; equality<\/strong>.<\/li>\n<li><strong>Power sharing<\/strong> is also difficult and messy \u2013 you need to be invested but it results in larger impact <em>(a \u201clevel playing field\u201d<\/em>)<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li><strong>Working\/designing with others in partnership &amp; building networks and relationships <\/strong>including those outside your comfort zone\n<ul>\n<li>All stakeholders (private, public, voluntary) working together towards a specific goal and <strong>shared decision making<\/strong> at each stage of the research cycle (from designing the research question to disseminating the findings). There is <em>\u201cpower in numbers\u201d<\/em><\/li>\n<li><strong>Learning <\/strong>from each other in a <strong>consultative\/iterative process <\/strong>(designing and re-designing)<\/li>\n<li><strong>Communication <\/strong>including simplicity, well-moderated discussions and active listening<\/li>\n<li><strong>Trust, respect and honesty<\/strong><\/li>\n<li><strong>Warmth and rapport<\/strong><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>Generating <strong>knowledge<\/strong> and <strong>skills<\/strong> building in a way that <strong>challenges the norms of research <\/strong>by <em>\u201cquestioning who is the expert\u201d<\/em>\n<ul>\n<li>Co-production is as <strong>valid<\/strong> as traditional research approaches and can produce <strong>quality <\/strong>research findings<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li><strong>Community-driven outcomes and solutions<\/strong> which are ultimately impactful to the community\n<ul>\n<li><strong>Awareness <\/strong>in the community<\/li>\n<li><strong>Feedback-loop <\/strong>with the community<\/li>\n<li><strong>Sharing results <\/strong><em>\u201cin the right way, to the right people\u201d<\/em><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li><strong>Acknowledging and recognising contributions <\/strong>\u2013ideas incorporated in the research process which will <strong>empower <\/strong>and <strong>motivate <\/strong>those involved.<\/li>\n<\/ul>\n<p>One group also reflected on whether \u201cresearch without co-production can succeed?\u201d They defined \u201csuccess\u201d as <strong><u>making a change<\/u><\/strong>.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"589\" class=\"size-large wp-image-1462 aligncenter\" src=\"https:\/\/blogs.imperial.ac.uk\/perc\/files\/2022\/08\/Activity-1-feedback-1024x589.jpg\" alt=\"\" \/><\/p>\n<p><strong><em><u>Discussion and priority setting \u2013 so what? Now what?<\/u><\/em><\/strong><\/p>\n<p>After presenting our preliminary research findings, we undertook a nominal group technique with each group. Nominal group technique is a structured method for group brainstorming that encourages contributions from everyone and fosters quick agreement across stakeholders on the most important issues.<\/p>\n<p>This session was facilitated by staff\/co-researchers and asked each group to discuss which results we should prioritise sharing and who we should be sharing these will, as well as the most important recommendations for potential changes to policy and services following from our findings.<\/p>\n<p>We adapted this activity based on the IIED Participatory Learning and Action Trainer\u2019s Guide (<a href=\"https:\/\/books.google.co.uk\/books?id=uu-BPsudVogC&amp;dq=IIED+Participatory+Learning+and+Action+Trainer%E2%80%99s+Guide+&amp;lr=&amp;source=gbs_navlinks_s\" target=\"_blank\" rel=\"noopener\">Pretty et al., 1995; p157-158<\/a>)<\/p>\n<p>This activity was split into two sections (we had a well-earned break in between!) and involved:<\/p>\n<ul>\n<li><strong>Silent idea generation<\/strong> (~ 5 mins) \u2013 each person writes possible solutions on their own on a piece of card\/paper<\/li>\n<li><strong>Round-robin reporting of ideas <\/strong>(~10 mins) \u2013 each person shares their ideas one at a time to the table. The facilitator writes in people\u2019s exact words until everyone has shared as many as they want. Each idea is labelled with a letter of the alphabet.<\/li>\n<li><strong>Discussion for clarification <\/strong>(~10 mins) \u2013 open discussion to clarify ideas (e.g., meanings of words, phrases etc.)<\/li>\n<li><strong>Ranking according to importance <\/strong>(~10 mins): each person records 5 items (1 per card) of highest priority from those on group flipchart. Each member identifies and ranks from 5 (highest) to 1 (lowest priority). All cards collected and tallied on master sheet<\/li>\n<\/ul>\n<p>Overall, issues around mental health and inequalities including the provision and structure of services were identified as key priority areas. On each of the tables, the ideas which were considered the highest priority were:<\/p>\n<ul>\n<li><strong>Early intervention for mental health &#8211; <\/strong>better awareness of mental health issues and where you can get help. More availability and ability to access mental health services through early intervention.\n<ol>\n<li>Access to GP\/care needs to adjust to address issues with mental health (<strong>service adaptation<\/strong>)<\/li>\n<li>Increased messaging around mental health and HIV <strong>(health promotion)<\/strong><\/li>\n<\/ol>\n<\/li>\n<li>Louder patient voice and choice in how services are provided <strong>(service provision) <\/strong>\u2013 particularly around issues of loss of body language in remote consultations<\/li>\n<li>Influencing <strong>integrated care systems<\/strong><\/li>\n<li><strong>Mental health and wellbeing<\/strong> to be fed back to providers and commissioners \u2013 isolation and loneliness does not just affect people with HIV<\/li>\n<li><strong>Inequality <\/strong>in accessing healthcare due to digital\/gadget poverty\n<ol>\n<li>How to build into services the support for people who are living in increased poverty<\/li>\n<li>Will annual blood tests reduce confidence in U=U<\/li>\n<li>Equality of access to services in the UK<\/li>\n<\/ol>\n<\/li>\n<\/ul>\n<p><strong><em><u>Group collages \u2013 the principles of co-production<\/u><\/em><\/strong><\/p>\n<p>Our final activity of the day was the most creative yet (!) it involved each table creating a collage on a principle of co-production using magazines, newspapers and flyers. These principles were selected from our previous work with the NIHR ARC NWL, IGHI and Heart n Soul and were presented at both the NCRM eFestival 2021 (<a href=\"https:\/\/www.arc-nwl.nihr.ac.uk\/news\/co-researchers-drive-co-production-workshop\" target=\"_blank\" rel=\"noopener\">more here<\/a>) and Imperial College Engagement Day 2022.<\/p>\n<p>Each table was asked to move to another collage after 10 minutes to allow them time to contribute ideas on each co-production principle collage (below).<\/p>\n<p class=\"jetpack-slideshow-noscript robots-nocontent\">This slideshow requires JavaScript.<\/p><div id=\"gallery-1461-2-slideshow\" class=\"jetpack-slideshow-window jetpack-slideshow jetpack-slideshow-black\" data-trans=\"fade\" data-autostart=\"1\" data-gallery=\"[{&quot;src&quot;:&quot;https:\\\/\\\/blogs.imperial.ac.uk\\\/perc\\\/files\\\/2022\\\/08\\\/Share-power-1024x768.jpg&quot;,&quot;id&quot;:&quot;1470&quot;,&quot;title&quot;:&quot;Share power&quot;,&quot;alt&quot;:&quot;&quot;,&quot;caption&quot;:&quot;Share power&quot;,&quot;itemprop&quot;:&quot;image&quot;},{&quot;src&quot;:&quot;https:\\\/\\\/blogs.imperial.ac.uk\\\/perc\\\/files\\\/2022\\\/08\\\/Stay-connected-1024x616.jpg&quot;,&quot;id&quot;:&quot;1471&quot;,&quot;title&quot;:&quot;Stay connected&quot;,&quot;alt&quot;:&quot;&quot;,&quot;caption&quot;:&quot;Stay connected&quot;,&quot;itemprop&quot;:&quot;image&quot;},{&quot;src&quot;:&quot;https:\\\/\\\/blogs.imperial.ac.uk\\\/perc\\\/files\\\/2022\\\/08\\\/Be-kind-have-fun-and-learn-1024x768.jpg&quot;,&quot;id&quot;:&quot;1467&quot;,&quot;title&quot;:&quot;Co-Production Collages&quot;,&quot;alt&quot;:&quot;&quot;,&quot;caption&quot;:&quot;Be kind and have fun&quot;,&quot;itemprop&quot;:&quot;image&quot;},{&quot;src&quot;:&quot;https:\\\/\\\/blogs.imperial.ac.uk\\\/perc\\\/files\\\/2022\\\/08\\\/Make-things-simple-1024x768.jpg&quot;,&quot;id&quot;:&quot;1469&quot;,&quot;title&quot;:&quot;Make things simple&quot;,&quot;alt&quot;:&quot;&quot;,&quot;caption&quot;:&quot;Make things simple&quot;,&quot;itemprop&quot;:&quot;image&quot;},{&quot;src&quot;:&quot;https:\\\/\\\/blogs.imperial.ac.uk\\\/perc\\\/files\\\/2022\\\/08\\\/Build-and-strengthen-relationships-1024x768.jpg&quot;,&quot;id&quot;:&quot;1468&quot;,&quot;title&quot;:&quot;Build and strengthen relationships&quot;,&quot;alt&quot;:&quot;&quot;,&quot;caption&quot;:&quot;Build and strengthen relationships&quot;,&quot;itemprop&quot;:&quot;image&quot;}]\" itemscope itemtype=\"https:\/\/schema.org\/ImageGallery\"><\/div>\n<p><strong><em><u>Panel discussion, reflections, and feedback<\/u><\/em><\/strong><\/p>\n<p>We finished the day with a panel discussion featuring our co-researchers (Silivia, Husseina and Wezi) and academic staff (Vas, Halle and Jane). We reflected on our experiences working together, sharing power and our hopes for the future of co-production.<\/p>\n<p>Our discussion across the event, was also captured throughout the day (located at the top of the blog) by our visual notetaker <a href=\"https:\/\/www.federicaciotti.com\/\" target=\"_blank\" rel=\"noopener\">Federica<\/a><\/p>\n<p>We also encouraged everyone to add their thoughts, ideas and feedback to our <strong>\u201cfeedback wall\u201d <\/strong>which was <a href=\"https:\/\/blogs.imperial.ac.uk\/perc\/2020\/07\/14\/feedback-wall-a-patients-question-inspires-art-and-science\/\">inspired by the work of our colleague Kelly Gleason<\/a>. The feedback from the event was extremely positive, with attendees saying<\/p>\n<blockquote><p>\u2018Great to see peer research done well and honouring the spirit of co-production\u2019<\/p>\n<p>\u2018Good to meet such a friendly group of people sharing common goals\u2019<\/p>\n<p>\u2018An amazing afternoon, thank you! Wonderful to see peers having so much agency over where research is moving\u2019<\/p>\n<p>\u2018Loved the creativity\u2019<\/p><\/blockquote>\n<p>Finally, we are excited to showcase our video which was created following the event by our fantastic filmmaker, <a href=\"http:\/\/edwardrolfe.com\/showreel\">Ed Rolfe<\/a>, and features several of the team sharing their reflections of working together and co-production.<\/p>\n<div class=\"jetpack-video-wrapper\"><span class=\"embed-youtube\" style=\"text-align:center; display: block;\"><iframe loading=\"lazy\" class=\"youtube-player\" width=\"640\" height=\"360\" src=\"https:\/\/www.youtube.com\/embed\/MvyKA3k5J9o?version=3&#038;rel=1&#038;showsearch=0&#038;showinfo=1&#038;iv_load_policy=1&#038;fs=1&#038;hl=en-GB&#038;autohide=2&#038;wmode=transparent\" allowfullscreen=\"true\" style=\"border:0;\" sandbox=\"allow-scripts allow-same-origin allow-popups allow-presentation allow-popups-to-escape-sandbox\"><\/iframe><\/span><\/div>\n<p>This event, and all our work so far, has been a huge learning curve for the team. We have learned the art of keeping things simple and how co-production, when done properly and in a respectful way, can really help to make research more accessible to everyone. We have built friendships with our co-researchers and can\u2019t wait to see what the future holds for both the project and our co-researchers!<\/p>\n<p>We\u2019d also like to give a huge thanks to those who attended our event and participated throughout the day as well as the funding received from the Societal Engagement Team\u2019s Participatory Research Fund.<\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"225\" class=\"size-medium wp-image-1451 alignleft\" src=\"https:\/\/blogs.imperial.ac.uk\/perc\/files\/2022\/07\/Co-pro-blog-5-300x225.png\" alt=\"\" \/><\/p>\n<p>For more on our work so far and for future updates please visit our <a href=\"https:\/\/www.imperial.ac.uk\/patient-experience-research-centre\/covid-19\/covid-19-research\/hiv-care\/\" target=\"_blank\" rel=\"noopener\">project webpage <\/a><\/p>\n<p>If you would like further information about the study or have any questions, please contact Vas at <a href=\"mailto:vasiliki.papageorgiou17@imperial.ac.uk\">vasiliki.papageorgiou17@imperial.ac.uk<\/a> or <a href=\"https:\/\/twitter.com\/vaspapa_\">@vaspapa_<\/a><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>This blog was co-authored by members of the project team (left).<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<hr \/>\n<p><em>Note: This work is one part of a wider project exploring experiences of the COVID-19 pandemic from HIV clinical- and community-based workers and volunteers (you can find out more about the other parts of this study<\/em><a href=\"https:\/\/www.imperial.ac.uk\/patient-experience-research-centre\/covid-19\/covid-19-research\/hiv-care\/\"><em> here<\/em><\/a><em>). It also feeds into a larger doctoral research project (using the 2017 <\/em><a href=\"https:\/\/www.ucl.ac.uk\/global-health\/research\/z-research\/positive-voices-national-survey-people-living-hiv\">Positive Voices survey<\/a><em>\u00a0data) looking to explore the impact of social determinants (e.g. housing, employment, income etc.) on the health and wellbeing of people living with HIV.<\/em><\/p>\n<p><em>This work is funded by Imperial College London\u2019s Societal Engagement team <a href=\"https:\/\/www.imperial.ac.uk\/be-inspired\/societal-engagement\/funding\/societal-engagement-seed-fund\/2020-rapid-response-seed-fund-recipients\/\">2020 Rapid Response Seed Fund<\/a> and <a href=\"https:\/\/www.imperial.ac.uk\/be-inspired\/societal-engagement\/funding\/participatory-research-seed-fund\/\">Participatory Research Seed Fund<\/a> and supported by an ESRC LISS Doctoral Training Partnership (DTP). The work would not have been possible without the generous support and time of our co-researchers and study participants.<\/em><\/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=\"311069\"><div class=\"pps-series-meta-content\"><div class=\"pps-series-meta-text\">This entry is part 2 of 2 in the series <a href=\"https:\/\/blogs.imperial.ac.uk\/perc\/series\/hiv-co-production\/\">HIV Co-Production<\/a><\/div><\/div><\/div><p>&nbsp; &nbsp; On Wednesday 6 July 2022, 25 stakeholders met at Lift, Islington (a community venue) to reflect, create and share ideas together as a group about co-producing HIV research using the example of a recent participatory project exploring the impact of COVID-19 on people living with HIV in the UK The showcase event was [&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":[259626],"tags":[311066,89384,308817,269976,274465,269966,260245,269993,11193,311048,260254,311068,3202],"series":[311069],"class_list":["post-1461","post","type-post","status-publish","format-standard","hentry","category-latest-news","tag-co-design","tag-co-production","tag-co-researchers","tag-community-involvement","tag-covid-19","tag-designing-research","tag-dissemination","tag-early-involvement","tag-hiv","tag-online-involvement","tag-patient-public-involvement","tag-peer-research","tag-public-engagement","series-hiv-co-production"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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