Irish Children's Arthritis Network, Co., Tipperary, Ireland.
UCD Centre for Arthritis Research, School of Medicine, University College Dublin, Dublin, Ireland.
Health Expect. 2020 Feb;23(1):96-105. doi: 10.1111/hex.12972. Epub 2019 Oct 18.
Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the relationships required for downstream public and patient involvement in pre-clinical adolescent rheumatology research.
To design a methodology for improving researcher-adolescent 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.
A research seminar and research skills workshop conducted entirely in 'plain English' for adolescents and their siblings aged 10-20. Upskilling of pre-clinical researchers for effective public involvement.
Study co-design between the voluntary charity Irish Children's Arthritis Network and the academic research centre UCD Centre for Arthritis Research. Fifteen adolescents aged 10-20 years old living with arthritis, four pre-clinical researchers and one qualitative researcher investigating adolescent or paediatric arthritis.
Relationship building and communications for effective downstream public involvement in pre-clinical and laboratory research.
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-operative dialogue.
Engaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre-clinical research.
Dedicating resources to building relationships and skills necessary for co-operative research involvement can overcome some of the barriers to public involvement in pre-clinical and laboratory-based research.
公众和患者的参与越来越成为研究资助者和政策制定者的期望。并非所有健康研究领域都面向公众。在这里，我们概述了一种方法，用于培养技能并建立关系，以促进下游的公众和患者参与临床前青少年风湿病研究。
设计一种专门用于改善研究人员与青少年之间沟通的方法，特别是针对 PPI 的建立相互关系。在研究参与之前进行深思熟虑和有效的准备，以提高参与的下游成功率。
为 10-20 岁的青少年及其兄弟姐妹举办的完全用“简单英语”进行的研究研讨会和研究技能研讨会。提高临床前研究人员的公众参与能力。
志愿慈善机构爱尔兰儿童关节炎网络与学术研究中心 UCD 关节炎研究中心之间的共同研究设计。15 名 10-20 岁患有关节炎的青少年、4 名临床前研究人员和 1 名调查青少年或儿科关节炎的定性研究人员。
为临床前和实验室研究中的有效下游公众参与建立关系和沟通。
这里概述的方法得到了非常积极的反馈。研究人员和患有关节炎的青少年都感到沟通更加舒适，对青少年关节炎和研究有了更多的了解，并且能够进行合作对话。
尽早参与，考虑社区的需求并制定适当的参与方法，可以使人们参与临床前研究。
投入资源来建立合作研究参与所需的关系和技能，可以克服公众参与临床前和基于实验室的研究的一些障碍。
