{"id":34158,"date":"2018-05-21T07:35:08","date_gmt":"2018-05-21T07:35:08","guid":{"rendered":"http:\/\/i-base.info\/htb\/?p=34158"},"modified":"2018-05-30T10:54:40","modified_gmt":"2018-05-30T10:54:40","slug":"uk-cab-community-representation-on-guideline-panels-and-research-studies","status":"publish","type":"post","link":"https:\/\/i-base.info\/htb\/34158","title":{"rendered":"UK-CAB community representation on guideline panels and research studies"},"content":{"rendered":"<p><strong><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-33960\" src=\"https:\/\/i-base.info\/htb\/wp-content\/uploads\/2018\/04\/4th-BHIVA-BASHH-logo-234x300.png\" alt=\"\" width=\"209\" height=\"265\" \/>Simon Collins, HIV i-Base<\/strong><\/p>\n<p><strong>A useful review of the involvement of HIV positive engagement in health policies and structures was presented at the 4th BNIVA\/BASHH conference by Longret Kwardem.<\/strong><\/p>\n<p>This study reported results from semi-structured interviews with 13 community representatives (7 men, 6 women) in the UK Community Advisory Board (UK-CAB). Participants were sampled to provide diversity of roles, experience and demographics. with advocacy experience ranging from 1.5 to &gt;20 years.<\/p>\n<p>Interviews were carried out by two trained researchers who are also UK-CAB members. The format was similar to a study last year that interviewed health workers on their views and experiences of community reps. [2]<\/p>\n<p>The interviews looked for examples of outcomes from community involvement and these included:<\/p>\n<ul>\n<li>Community reps wanted to \u2018make a difference\u2019 and their experience correlated with whether they perceived they had made an impact.<\/li>\n<li>Commonly cited benefits included: changes in trial design \u2013 particularly exclusion and inclusion criteria; inclusion in guidelines of overlooked issues; highlighting concerns of specific groups; bringing community perspectives; using community-friendly language; and improvements to clinics.<\/li>\n<li>Benefits from engaging in this work included: gaining respect and support from HIV professionals; increased learning opportunities; and giving back to their community.<\/li>\n<li>Reps reported valued UK-CAB support \u2013 training, networking, communicating through the forum \u2013 and accountability among activists.<\/li>\n<\/ul>\n<p>However, sustainability for both individual and the CAB was also mentioned as one of the most difficult ongoing challenges, especially when more reps work in a voluntary capacity. Some responses commented that they had to give up work shifts in order to volunteer as reps.<\/p>\n<p>As one comment quoted in the poster made clear: \u201cWe can do a lot as a network with little funding but can\u2019t do anything with no funding\u201d.<\/p>\n<p>The UK-CAB is a network of more than 900 community activists across the UK, from more than 120 organisations. The poster reported that the UK-CAB currently has 10 community reps on 8 BHIVA sub-committees, 2 reps on 9 BHIVA guidelines panels and 40 community places on research studies and other policy groups.<\/p>\n<p>Reference<\/p>\n<p>1. Kwardem L et al. What impact do UKCAB representatives on guideline writing committees and academic\/clinical research study boards make?<br \/>\n4th Joint BHIVA\/BASHH Conference, 17\u201320 April 2018, Edinburgh. Poster abstract P273. Published in HIV Medicine, 19 (Suppl. 2), s21\u2013s152.<br \/>\n<a href=\"http:\/\/www.bhiva.org\/AnnualConference2018Presentations.aspx\">http:\/\/www.bhiva.org\/AnnualConference2018Presentations.aspx<\/a>\u00a0<a href=\"http:\/\/www.bhiva.org\/AnnualConference2018Presentations.aspx\"><br \/>\n<\/a><a href=\"http:\/\/www.ukcab.net\/wp-content\/uploads\/2018\/05\/BHIVAPoster2018.pdf\" rel=\"noopener\">http:\/\/www.ukcab.net\/wp-content\/uploads\/2018\/05\/BHIVAPoster2018.pdf <\/a>(PDF poster)<\/p>\n<p>2. Kwardem L et al. (2017), \u2018What is the impact of having UK-CAB representatives on guideline writing committees and academic\/clinical research study boards?\u2019 (Abstract). HIV Medicine, 18, Supp 1, p67.<br \/>\n<a href=\"http:\/\/www.ukcab.net\/wp-content\/uploads\/2017\/05\/UK-CAB-BHIVA%C2%ADComRep-2017poster-V2.pdf\" rel=\"noopener\">http:\/\/www.ukcab.net\/wp-content\/uploads\/2017\/05\/UK-CAB-BHIVA%C2%ADComRep-2017poster-V2.pdf<\/a> \u00a0(PDF poster)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Simon Collins, HIV i-Base A useful review of the involvement of HIV positive engagement in health policies and structures was presented at the 4th BNIVA\/BASHH conference by Longret Kwardem. This study reported results from semi-structured interviews with 13 community representatives &hellip;<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4,39],"tags":[252],"class_list":["post-34158","post","type-post","status-publish","format-standard","hentry","category-conference-reports","category-activism-advocacy","tag-bhiva-bashh-4th-2018"],"_links":{"self":[{"href":"https:\/\/i-base.info\/htb\/wp-json\/wp\/v2\/posts\/34158","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/i-base.info\/htb\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/i-base.info\/htb\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/i-base.info\/htb\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/i-base.info\/htb\/wp-json\/wp\/v2\/comments?post=34158"}],"version-history":[{"count":0,"href":"https:\/\/i-base.info\/htb\/wp-json\/wp\/v2\/posts\/34158\/revisions"}],"wp:attachment":[{"href":"https:\/\/i-base.info\/htb\/wp-json\/wp\/v2\/media?parent=34158"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/i-base.info\/htb\/wp-json\/wp\/v2\/categories?post=34158"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/i-base.info\/htb\/wp-json\/wp\/v2\/tags?post=34158"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}