TY - JOUR AU - Russell, Dianne J AU - Sprung, Jennifer AU - McCauley, Dayle AU - Kraus de Camargo, Olaf AU - Buchanan, Francine AU - Gulko, Roman AU - Martens, Rachel AU - Gorter, Jan Willem PY - 2016 DA - 2016/11/11 TI -社交媒体时代的知识交流与发现:从开始到建立一个由家长主导的儿童残疾网络研究咨询社区的旅程JO - J Med Internet Res SP - e293 VL - 18 IS - 11 KW -知识交流KW -研究参与KW -合作研究KW -科学合作KW -网络社区KW -社交媒体KW - Facebook KW -儿童残疾KW -患者和公众参与(PPI) AB -背景:使父母和家庭参与研究的所有方面，从提出问题到传播和知识交流的努力正在增加。虽然社交媒体作为健康传播的一种方法已经显示出许多好处，包括增加可访问性、与他人的互动以及获得卫生保健信息，但很少有关于使用社交媒体加强研究伙伴关系的工作发表。目的:我们的目标是描述基于网络的研究咨询社区的发展和评估，该社区在Facebook上托管，并将特殊需要儿童的不同群体的父母与CanChild儿童残疾研究中心的研究人员联系起来。这个社区的目标是共同工作和交流知识，以改善研究和儿童及其家庭的生活。方法:基于网络的“父母参与研究”(PPR)咨询社区是2014年6月在Facebook上成立的一个秘密小组，由两名与CanChild合作的家长审查员管理。我们通过2014年6月至2015年4月Facebook用户参与度和活跃度的统计数据(如帖子数量、评论数量)以及基于网络的会员调查来评估其成功程度。结果:截至2015年4月1日，PPR社区共有96名参与者(2名家长主持人，13名研究人员和81名家庭成员)。在9个月的时间里，共有432篇原创文章，其中主持人155篇(35.9%)，家长197篇(45.6%)，研究人员80篇(18.5%)。 Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group. Conclusions: The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most. SN - 1438-8871 UR - //www.mybigtv.com/2016/11/e293/ UR - https://doi.org/10.2196/jmir.5994 UR - http://www.ncbi.nlm.nih.gov/pubmed/27836818 DO - 10.2196/jmir.5994 ID - info:doi/10.2196/jmir.5994 ER -