{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T14:47:53Z","timestamp":1787237273959,"version":"build-2736575974"},"reference-count":68,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2019,10,18]],"date-time":"2019-10-18T00:00:00Z","timestamp":1571356800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2020,2]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Context<\/jats:title>\n                    <jats:p>Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public\u2010facing. Here, we outline an approach for building the skills and developing the relationships required for downstream public and patient involvement in pre\u2010clinical adolescent rheumatology research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To design a methodology for improving researcher\u2010adolescent communications specifically aimed at mutual relationship building for PPI. Deliberate and effective preparation in advance of research involvement to improve the downstream success of that involvement.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>A research seminar and research skills workshop conducted entirely in \u2018plain English\u2019 for adolescents and their siblings aged 10\u201020. Upskilling of pre\u2010clinical researchers for effective public involvement.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting and participants<\/jats:title>\n                    <jats:p>Study co\u2010design between the voluntary charity Irish Children's Arthritis Network and the academic research centre UCD Centre for Arthritis Research. Fifteen adolescents aged 10\u201020\u00a0years old living with arthritis, four pre\u2010clinical researchers and one qualitative researcher investigating adolescent or paediatric arthritis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main variables studied<\/jats:title>\n                    <jats:p>Relationship building and communications for effective downstream public involvement in pre\u2010clinical and laboratory research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The methodology outlined here was received extremely positively. Both researchers and adolescents living with arthritis felt more comfortable communicating, more knowledgeable about juvenile arthritis and research, and more able to engage in co\u2010operative dialogue.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>Engaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre\u2010clinical research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Dedicating resources to building relationships and skills necessary for co\u2010operative research involvement can overcome some of the barriers to public involvement in pre\u2010clinical and laboratory\u2010based research.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.12972","type":"journal-article","created":{"date-parts":[[2019,10,18]],"date-time":"2019-10-18T07:39:16Z","timestamp":1571384356000},"page":"96-105","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["Laying the groundwork: Building relationships for public and patient involvement in pre\u2010clinical paediatric research"],"prefix":"10.1111","volume":"23","author":[{"given":"Wendy","family":"Costello","sequence":"first","affiliation":[{"name":"Irish Children's Arthritis Network, Co. Tipperary Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2014-934X","authenticated-orcid":false,"given":"Emma","family":"Dorris","sequence":"additional","affiliation":[{"name":"UCD Centre for Arthritis Research School of Medicine University College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,10,18]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1073\/pnas.1213273110"},{"key":"e_1_2_10_3_1","volume-title":"The Public Understanding of Science","author":"Royal Society","year":"1985"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2014-006400"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12961-018-0337-6"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10728-014-0289-0"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1126\/scitranslmed.3002747"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1073\/pnas.1404402111"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1073\/pnas.1408267111"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2007.26"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.clpt.6100029"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e31815699d0"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.287.13.1728"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.3310\/hsdr03380"},{"key":"e_1_2_10_15_1","article-title":"Patient and public involvement in basic science research\u2014are we doing enough?","author":"Dobbs TW","year":"2016","journal-title":"BMJ"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1136\/ard.2010.135129"},{"key":"e_1_2_10_17_1","unstructured":"UK AR.Patient and Public Involvement \u2013 A Researcher's Guide.2017;https:\/\/www.arthritisresearchuk.org\/~\/media\/Files\/Research\/Information%20for%20applicants\/Patient%20and%20public%20involvement%20booklet.ashx?la=en. 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