Glickman Seth W, Galhenage Sam, McNair Lindsay, Barber Zachry, Patel Keyur, Schulman Kevin A, McHutchison John G
University of North Carolina, Chapel Hill, NC, USA.
J Empir Res Hum Res Ethics. 2012 Feb;7(1):71-80. doi: 10.1525/jer.2012.7.1.71.
The rapid growth of internet usage has led to an explosion of social networking sites for discussion of health issues. This provides a forum for subjects to communicate with one another during the course of the studies. Previous studies have raised concerns about the quality of health information on social networking sites, although none have evaluated content related to ongoing clinical trials. We reviewed material posted in virtual communities by self-identified clinical trial participants. We identified material posted in online health forums that could introduce bias into clinical research studies; we believe that this issue warrants further study and discussion. Physicians and others who conduct clinical trials should be aware of this issue. Study investigators and research teams should also talk to their study subjects about where and how they are obtaining information in order to prevent behaviors and correct misinformation that could put a subject's safety or the study objectives at risk. Given the rapid increase in Internet use for health care, a broader evaluation of both the benefits and potential risks of social networking among research participants during the course of a clinical trial appears warranted.
互联网使用的迅速增长导致了用于讨论健康问题的社交网站的激增。这为研究过程中的受试者相互交流提供了一个平台。先前的研究对社交网站上健康信息的质量表示担忧，尽管尚无研究评估与正在进行的临床试验相关的内容。我们审查了自认为是临床试验参与者在虚拟社区发布的材料。我们在在线健康论坛中发现了可能会给临床研究引入偏差的材料；我们认为这个问题值得进一步研究和讨论。进行临床试验的医生和其他人应该意识到这个问题。研究调查人员和研究团队也应该与他们的研究对象谈论他们获取信息的地点和方式，以防止可能危及受试者安全或研究目标的行为并纠正错误信息。鉴于互联网在医疗保健领域的使用迅速增加，对临床试验过程中研究参与者之间社交网络的益处和潜在风险进行更广泛的评估似乎是必要的。
