{"id":24,"date":"2016-02-23T15:26:43","date_gmt":"2016-02-23T15:26:43","guid":{"rendered":"http:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/?p=24"},"modified":"2022-04-13T13:59:11","modified_gmt":"2022-04-13T13:59:11","slug":"eddy","status":"publish","type":"post","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/eddy\/","title":{"rendered":"How Public Involvement Informed and Guided the EDDY Study"},"content":{"rendered":"<p><em>Stephen Thomas, Sarah Earle-Jones and Julia Townson were asked to present the\u00a0Early Detection of type 1 Diabetes in Youth (EDDY)\u00a0<\/em>study\u00a0<em>at the Health and Care Research Wales Involving People Network meeting on 1\u00a0February 2016. The aim of the presentation was to show how Involving People network members had been involved with researchers and how public involvement had influenced the project. The aim of the presentation was to deliver it as a conversation, similar to\u00a0a question and answer panel. The text below is a sample of what was delivered on the day. On the day Sarah was unable to attend, but sent comments\u00a0that we have\u00a0included below. Stephen acted as Chair and directed questions to Julia. This is a\u00a0particularly important\u00a0example of working\u00a0with the public during a study because the idea and inspiration for the intervention came\u00a0directly\u00a0from public\u00a0involvement.<\/em><\/p>\n<p><strong>Stephen: <\/strong>Good afternoon my name is Stephen Thomas.\u00a0 I was one of the parents invited to become involved in a study about interventions to raise awareness of type one diabetes in children and young adults.\u00a0 I would like to introduce you to Julia who was one of the co-applicants on the EDDY study and perhaps I can start by asking you to give a brief outline the project and why it is important.<\/p>\n<p><strong>Julia:\u00a0 <\/strong>It is important because, although quite rare, type one diabetes in childhood, if not detected can be very dangerous and can lead to fatality.\u00a0 Therefore, we felt it was important to carry out a study which developed and delivered interventions to both GPs and parents, in order to raise awareness of the symptoms.<\/p>\n<p><strong>Stephen: <\/strong>So Julia you brought us on board as parents to look at the intervention in schools.\u00a0 Some of us were parents with children with diabetes and some, like myself, were fortunate enough not to have children with type one diabetes.\u00a0 Why did you feel that it was important that you had that mix?<\/p>\n<p><strong>Julia: <\/strong>Parents with children with type 1 diabetes are well aware of the symptoms.\u00a0 Therefore, it was important to canvas the opinions of those without to ensure the intervention had the most chance of success.<\/p>\n<p><strong>Stephen:\u00a0 <\/strong>So Julia you brought us together for a number of meetings to design the intervention.\u00a0 Did it go as you expected?<\/p>\n<p><strong>Julia:\u00a0 <\/strong>Well, in some ways yes and in some ways no. Yes, I was confident that parents would be able to design something, we were thinking a fridge magnet, that sort of thing, but what they came up with exceeded our expectations! The shopping bag was such a fantastic idea.<\/p>\n<p><strong>Stephen: <\/strong>What about you Sarah, what were your expectations?<\/p>\n<p><strong>Sarah:<\/strong> I had none! I arrived at the first meeting with some trepidation but I think to be honest that we all felt like that. By the end of the meeting I was excited by the task entrusted to us and felt quite passionately about the need to get information &#8216;out there&#8217;, to increase awareness of type 1 diabetes. I was shocked by the stories relayed to us by the other group members who were parents of children with type 1 diabetes.<\/p>\n<p>Julia: What about your expectations Stephen?<\/p>\n<p><strong>Stephen:\u00a0 <\/strong>I guess, initially, I didn\u2019t have much in the way of expectations only that I was enthusiastic about taking part as although my daughter is not a diabetic my mother had type 1 diabetes.\u00a0 However, I was very pleased with the way that you set us up as a panel as we were there from the beginning and although you had ideas about the type of interventions, you were very open to our input.<\/p>\n<p><strong>Julia: <\/strong>Yes, we wanted as much of your input as possible.\u00a0 How did you think that your input changed things?<\/p>\n<p><strong>Stephen: W<\/strong>e had a number of important conversations about the best way to raise awareness in a condition that is thankfully relatively rare.\u00a0 In fact, if I can pause for a moment and just ask for a show of hands.\u00a0 How many people in this audience know how to check for symptoms for meningitis?\u00a0 The glass test.\u00a0 The occurrences of type 1 diabetes and meningitis in children in the UK are very similar.\u00a0 How many people in this room, before you saw it on the slide behind me knew the symptoms of type 1 diabetes? Yes, less than for meningitis.\u00a0 Therefore, we felt, as a group, it was important to get the message across in a way that wasn\u2019t a single intervention which got lost but rather in the form of perhaps an everyday item so therefore, along with the leaflets and messages that were going into GPs we decided that using a bag, as with the 5p charge people are saving bags, would be an effective way of doing it.<\/p>\n<p><strong>Stephen: <\/strong>Sarah what did you think about your\u00a0 input?<\/p>\n<p><strong>Sarah:<\/strong> I too was impressed by the level of input that we were given and that our contributions were both valued and valid. It was an exciting project to be a part of and I feel a splash of pride when I notice the blue bags &#8216;popping up&#8217; as I&#8217;m out and about!<\/p>\n<p><em>Image by\u00a0Matthew Horwood. Courtesy of Health and Care Research Wales.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"Stephen Thomas, Sarah Earle-Jones and Julia Townson were asked to present the\u00a0Early Detection of type 1 Diabetes in Youth (EDDY)\u00a0study\u00a0at the Health and Care Research Wales Involving People Network meeting [&hellip;]","protected":false},"author":1144,"featured_media":25,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[6],"tags":[],"class_list":["post-24","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-and-public-involvement"],"jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/s7dIou-eddy","jetpack-related-posts":[{"id":946,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/involving-people-research-design-and-conduct-service-south-east-wales-rdcs-ideas-event\/","url_meta":{"origin":24,"position":0},"title":"Involving People: Research Design and Conduct Service South East Wales (RDCS) Ideas Event","author":"Claire Nollett","date":"May 2, 2018","format":false,"excerpt":"The Research Design and Conduct Service South East Wales (RDCS SE Wales) recently ran a one day \"Early Ideas\" workshop for NHS and social care staff. 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All citizens in Wales are invited to sign up online and answer some simple, yet fundamental questions about health and lifestyle, so they can\u2026","rel":"","context":"In &quot;HealthWise Wales&quot;","block_context":{"text":"HealthWise Wales","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/healthwise-wales\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/03\/Fiona-Lugg-2-scaled.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/03\/Fiona-Lugg-2-scaled.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/03\/Fiona-Lugg-2-scaled.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/03\/Fiona-Lugg-2-scaled.jpg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/03\/Fiona-Lugg-2-scaled.jpg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/03\/Fiona-Lugg-2-scaled.jpg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":2616,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/inclusive-opportunities-what-is-effective-public-involvement-in-care-home-research\/","url_meta":{"origin":24,"position":3},"title":"Inclusive Opportunities: What Is Effective Public Involvement In Care Home Research?","author":"Tanisha Burgher","date":"July 10, 2023","format":false,"excerpt":"My journey into research As a final year medical student, I have witnessed my growth from being a layperson reading peer-reviewed articles to becoming a published author. 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