Using social media listening to understand barriers to genomic medicine for those living with Ehlers-Danlos syndromes and hypermobility spectrum disorders.
Using social media listening to understand barriers to genomic medicine for those living with Ehlers-Danlos syndromes and hypermobility spectrum disorders.
复制标题
DOI：
10.1111/hex.13755
复制
发表时间：
2023-08
影响因子：
3.2
通讯作者：
Weber, Shani
中科院分区：
文献类型：
--
作者：
Kline, Erika;Garrett, Amanda Leigh;Brownstein, Catherine;Ziniel, Sonja;Payton, Erica;Goldin, Aleah;Hoffman, Kathleen;Chandler, Judy;Weber, Shani
关键词：
技术进步本身并没有导致基因组医学在广泛的疾病和人群中的整合。为了使基因组医学在不同专业和条件下成功实施，需要通过多方面了解这些障碍发生的背景以及如何经历这些障碍，来确定患者和护理人员所面临的挑战。受罕见疾病影响的个体，如Ehlers-Danlos综合征（EDS）和高动性谱系障碍（HSD），在获得基因组药物方面面临许多挑战。许多患有罕见疾病的患者在在线健康社区中寻求信息并找到安慰。通过在线健康社区促进的社交媒体对话是了解患者和护理人员真实体验的窗口。到目前为止，还没有其他研究通过分析社交媒体帖子的内容来研究基因组医学障碍，但社交媒体倾听的新方法允许分析关于生活经历的虚拟，有机对话。使用修改后的社会生态模型，这项研究发现，社会结构和人际障碍最经常阻碍EDS和HSD患者和护理人员获得基因组药物。数据是通过社交媒体对话检索的，这些对话是通过一个在线卫生社区-在线卫生社区-向公众开放的卫生社区提供的。社交媒体倾听允许分析关于生活体验的虚拟有机对话。
Technological improvements alone have not led to the integration of genomic medicine across a broad range of diseases and populations. For genomic medicine to be successfully implemented across specialties and conditions, the challenges patients and caregivers experience need to be identified using a multi‐faceted understanding of the context in which these obstacles occur and how they are experienced. Individuals affected by rare conditions, like Ehlers–Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), express numerous challenges with accessing genomic medicine. Many patients living with rare diseases seek information and find comfort in online health communities. Social media conversations facilitated through online health communities are windows into patients' and caregivers' authentic experiences. To date, no other study has examined genomic medicine barriers by analysing the content of social media posts, yet the novel methodological approach of social media listening permits the analysis of virtual, organic conversations about lived experiences. Using a modified social–ecological model, this study found that social–structural and interpersonal barriers most frequently impede access to genomic medicine for patients and caregivers living with EDS and HSD. Data were retrieved through social media conversations facilitated through publicly accessible health communities through Inspire, an online health community. Social media listening permits the analysis of virtual, organic conversations about lived experiences.
登录
查看更多内容
DOI：
10.1177/1090198111415105
发表时间：
2012-04
期刊：
Health education & behavior : the official publication of the Society for Public Health Education
影响因子：
--
作者：
Kumar S;Quinn SC;Kim KH;Musa D;Hilyard KM;Freimuth VS
通讯作者：
Freimuth VS
患者和护理人员之间使用社交媒体：范围审查。
影响因子：
2.9
作者：
Hamm MP;Chisholm A;Shulhan J;Milne A;Scott SD;Given LM;Hartling L
通讯作者：
Hartling L
影响因子：
2.3
作者：
Raghavan S;Vassy JL
通讯作者：
Vassy JL
影响因子：
2.2
作者：
Berglund, Britta;Anne-Cathrine, Mattiasson;Randers, Ingrid
通讯作者：
Randers, Ingrid
影响因子：
7.5
作者：
Chen, Langtao;Baird, Aaron;Straub, Detmar
通讯作者：
Straub, Detmar