Della Rosa Sara, Sen Falguni
Global Healthcare Innovation Management Center, Department of Management Systems, Fordham University, New York City, NY, United States.
Interact J Med Res. 2019 Feb 11;8(1):e10146. doi: 10.2196/10146.
Social network sites (SNSs) are being increasingly used to exchange health information between patients and practitioners, pharmaceutical companies, and research centers. Research contributions have explored the contents of such exchanges discussed online. They have categorized the topics discussed and explored the engagement levels of these discussions.
This research aimed at investigating the potential role of SNSs in health care. Specifically it provides an information-clustering analysis of the health information available on SNSs and develops a research design that allows an investigation of this information in enhancing health care research and delivery. In addition, this research aims at testing whether SNSs are valid tools for sharing drug-related information by patients.
This research is based on a specific chronic disease: multiple sclerosis. We searched Facebook to identify and research the social media groups related to this condition. The analysis was restricted to public groups for privacy concerns. We created a database by downloading posts from two main groups (in the English language). Subsequently, we performed a content analysis and statistical analysis; this allowed us to explore the differences between categories, their engagement levels, and the types of posts shared. The mean level of engagement for each topic was analyzed using a 1-way analysis of variance.
From a sample of 7029 posts, initial results showed that there were 8 information categories that resonated (percentage of times the topic appears in our sample) with those who post on Facebook: information and awareness (4923/7029, 70.04%), event advertising and petitions (365/7029, 5.19%), fundraising (354/7029, 5.04%), patient support (217/7029, 3.09%), drug discussion (144/7029, 2.05%), clinical trials and research studies (59/7029, 0.84%), product and drug advertising (48/7029, 0.68%), and other (919/7029, 13.07%). Initial analysis showed that comments and likes (as measures of engagement level) are the most frequent indicators and measures of level of engagement. Our results show a high engagement level (in terms of views, likes, comments, etc) for patient support and information and awareness. In addition, although drug discussion had a low resonance, it had an unexpected highly engagement level which we found worthy of further exploration.
SNSs have become important tools for patients and health care practitioners to share or seek information. We identified the type of information shared and how the public reacted to it. Our research confirmed that the topics discussed in social media related to specific diseases such as multiple sclerosis are similar to the information categories observed by other researchers. We unexpectedly found other categories such as drug discussion. These and other results of our study enhance our understanding of how content is disseminated and perceived within a specific disease-based community. We concluded that this information has useful implications in the design of prevention campaigns, educational programs, and chronic disease management.
社交网站(SNS)正越来越多地被用于患者与从业者、制药公司及研究中心之间交换健康信息。已有研究探讨了在线讨论的此类交流内容。他们对讨论的话题进行了分类,并探究了这些讨论的参与程度。
本研究旨在调查社交网站在医疗保健中的潜在作用。具体而言,它对社交网站上可用的健康信息进行信息聚类分析,并制定一种研究设计,以便能够调查这些信息在加强医疗保健研究与服务方面的作用。此外,本研究旨在测试社交网站是否是患者分享药物相关信息的有效工具。
本研究基于一种特定的慢性病:多发性硬化症。我们在脸书上搜索以识别和研究与该疾病相关的社交媒体群组。出于隐私考虑,分析仅限于公开群组。我们通过从两个主要群组(英文)下载帖子创建了一个数据库。随后,我们进行了内容分析和统计分析;这使我们能够探究类别之间的差异、它们的参与程度以及所分享帖子的类型。使用单向方差分析对每个主题的平均参与程度进行分析。
从7029篇帖子的样本中,初步结果显示有8个信息类别与在脸书上发帖的人产生共鸣(该主题在我们样本中出现的百分比):信息与认知(4923/7029,70.04%)、活动广告与请愿(365/7029,5.19%)、筹款(354/7029,5.04%)、患者支持(217/7029,3.09%)、药物讨论(144/7029,2.05%)、临床试验与研究(59/7029,0.84%)、产品与药物广告(48/7029,0.68%)以及其他(919/7029,13.07%)。初步分析表明,评论和点赞(作为参与程度的衡量指标)是最常见的参与指标和衡量方式。我们的结果显示患者支持以及信息与认知的参与程度较高(就浏览量、点赞数、评论数等而言)。此外,尽管药物讨论的共鸣度较低,但它的参与程度却出人意料地高,我们认为值得进一步探究。
社交网站已成为患者和医疗保健从业者分享或寻求信息的重要工具。我们确定了所分享信息的类型以及公众对此的反应。我们的研究证实,社交媒体上与特定疾病(如多发性硬化症)相关讨论的话题与其他研究人员观察到的信息类别相似。我们意外地发现了其他类别,如药物讨论。我们研究的这些及其他结果增进了我们对特定疾病社区内内容传播和认知方式的理解。我们得出结论,这些信息在预防活动、教育项目和慢性病管理的设计中具有有益的启示。