Program in Rheumatology, Division of Immunology, Boston Children's Hospital, 300 Longwood Avenue, Fegan 6, Boston, MA 02115, USA; Division of Rheumatology and Clinical Immunology, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA; Computational Health Informatics Program, Boston Children's Hospital, Boston, MA, USA.
Rheum Dis Clin North Am. 2022 Feb;48(1):233-243. doi: 10.1016/j.rdc.2021.09.005.
The advent of social media has revolutionized and empowered communities of people living with rare diseases. Social media has enabled families of children with similar pediatric rheumatic diseases (PRDs) to meet regardless of geographic distance, allowing them to support each other and join together to advocate on behalf of their children. Researchers have also leveraged social media to learn about the health of patients and their communities. This article reviews the promises and perils of social media related to health, focusing on its potential use to support research and care of children with PRD.
社交媒体的出现彻底改变了并增强了患有罕见病的人群的力量。社交媒体使患有类似儿科风湿性疾病 (PRD) 的儿童的家庭能够相聚，无论地理距离如何，使他们能够相互支持，并共同为自己的孩子发声。研究人员也利用社交媒体来了解患者及其社区的健康状况。本文回顾了与健康相关的社交媒体的承诺和危险，重点讨论了其在支持儿科风湿性疾病患儿的研究和护理方面的潜在用途。
