不断发展的患者与研究者合作:一个由患者主导的知识转化活动的实例研究

Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event.

作者信息

Leese Jenny, Kerr Sheila, McKinnon Annette, Carruthers Erin, Backman Catherine, Li Linda, Townsend Anne

机构信息

Arthritis Research Canada, Richmond, BC, Canada.

出版信息

J Particip Med. 2017 Aug 4;9(1):e13. doi: 10.2196/jopm.8756.

Abstract

Patient engagement occurs when patients actively collaborate in health research in ways that are meaningful to them. Resources to facilitate patient engagement have been developed, but their approach is mainly toward building competencies in the early stages of forming new practices of patient engagement. This paper describes a patient-led collaboration in rheumatology, in the context of an established patient-researcher partnership. Using a case study approach, we report on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board (APAB), which is a group of volunteer advocates living with arthritis based at Arthritis Research Canada. We provide an overview of APAB's decade-long history, describe the planning and the event itself, and report on the challenges encountered, reflections and solutions pertinent for sustaining patient-researcher collaborative practices.

摘要

当患者以对他们有意义的方式积极参与健康研究时,患者参与就会发生。促进患者参与的资源已经开发出来,但其方法主要是在形成患者参与新实践的早期阶段培养能力。本文描述了在已建立的患者 - 研究人员伙伴关系背景下,由患者主导的风湿病合作。通过案例研究方法,我们报告了一个名为eROAR2013(通过关节炎研究进行推广)的研究知识转化活动,该活动由关节炎患者咨询委员会(APAB)成员牵头,APAB是一群生活在加拿大关节炎研究所的患有关节炎的志愿者倡导者。我们概述了APAB长达十年的历史,描述了活动的策划和活动本身,并报告了遇到的挑战、反思以及维持患者 - 研究人员合作实践的相关解决方案。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/95fe/8080461/d9a4c08ed1f8/jopm_v9i1e13_fig1.jpg

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索