Swan Melanie
MS Futures Group, Palo Alto, CA 94306, United States.
J Med Internet Res. 2012 Mar 7;14(2):e46. doi: 10.2196/jmir.1988.
Crowdsourced health research studies are the nexus of three contemporary trends: 1) citizen science (non-professionally trained individuals conducting science-related activities); 2) crowdsourcing (use of web-based technologies to recruit project participants); and 3) medicine 2.0 / health 2.0 (active participation of individuals in their health care particularly using web 2.0 technologies). Crowdsourced health research studies have arisen as a natural extension of the activities of health social networks (online health interest communities), and can be researcher-organized or participant-organized. In the last few years, professional researchers have been crowdsourcing cohorts from health social networks for the conduct of traditional studies. Participants have also begun to organize their own research studies through health social networks and health collaboration communities created especially for the purpose of self-experimentation and the investigation of health-related concerns.
The objective of this analysis is to undertake a comprehensive narrative review of crowdsourced health research studies. This review will assess the status, impact, and prospects of crowdsourced health research studies.
Crowdsourced health research studies were identified through a search of literature published from 2000 to 2011 and informal interviews conducted 2008-2011. Keyword terms related to crowdsourcing were sought in Medline/PubMed. Papers that presented results from human health studies that included crowdsourced populations were selected for inclusion. Crowdsourced health research studies not published in the scientific literature were identified by attending industry conferences and events, interviewing attendees, and reviewing related websites.
Participatory health is a growing area with individuals using health social networks, crowdsourced studies, smartphone health applications, and personal health records to achieve positive outcomes for a variety of health conditions. PatientsLikeMe and 23andMe are the leading operators of researcher-organized, crowdsourced health research studies. These operators have published findings in the areas of disease research, drug response, user experience in crowdsourced studies, and genetic association. Quantified Self, Genomera, and DIYgenomics are communities of participant-organized health research studies where individuals conduct self-experimentation and group studies. Crowdsourced health research studies have a diversity of intended outcomes and levels of scientific rigor.
Participatory health initiatives are becoming part of the public health ecosystem and their rapid growth is facilitated by Internet and social networking influences. Large-scale parameter-stratified cohorts have potential to facilitate a next-generation understanding of disease and drug response. Not only is the large size of crowdsourced cohorts an asset to medical discovery, too is the near-immediate speed at which medical findings might be tested and applied. Participatory health initiatives are expanding the scope of medicine from a traditional focus on disease cure to a personalized preventive approach. Crowdsourced health research studies are a promising complement and extension to traditional clinical trials as a model for the conduct of health research.
众包健康研究是三种当代趋势的交汇点：1）公民科学（未经专业训练的个人开展与科学相关的活动）；2）众包（利用基于网络的技术招募项目参与者）；3）医学2.0/健康2.0（个人积极参与自身医疗保健，特别是使用网络2.0技术）。众包健康研究作为健康社交网络（在线健康兴趣社区）活动的自然延伸而兴起，可以是研究者组织的，也可以是参与者组织的。在过去几年中，专业研究人员一直在从健康社交网络中众包队列以进行传统研究。参与者也开始通过健康社交网络以及专门为自我实验和调查健康相关问题而创建的健康协作社区来组织自己的研究。
本分析的目的是对众包健康研究进行全面的叙述性综述。该综述将评估众包健康研究的现状、影响和前景。
通过搜索2000年至2０11年发表的文献以及在2008 - 2011年进行的非正式访谈来确定众包健康研究。在Medline/PubMed中搜索与众包相关的关键词。选择那些呈现包括众包人群的人类健康研究结果的论文纳入。通过参加行业会议和活动、采访参会者以及审查相关网站来确定未发表在科学文献中的众包健康研究。
参与式健康是一个不断发展的领域，个人利用健康社交网络、众包研究、智能手机健康应用程序和个人健康记录来实现各种健康状况的积极成果。PatientsLikeMe和23andMe是研究者组织的众包健康研究的主要运营者。这些运营者在疾病研究、药物反应、众包研究中的用户体验以及基因关联等领域发表了研究结果。量化自我、Genomera和DIYgenomics是参与者组织的健康研究社区，个人在其中进行自我实验和小组研究。众包健康研究有多种预期结果和科学严谨程度。
参与式健康倡议正成为公共卫生生态系统的一部分，互联网和社交网络的影响促进了其快速发展。大规模参数分层队列有可能促进对疾病和药物反应的下一代理解。众包队列的庞大规模不仅是医学发现的一项资产，医学研究结果得以测试和应用的近乎即时的速度也是如此。参与式健康倡议正在将医学的范围从传统的疾病治疗重点扩展到个性化预防方法。众包健康研究作为健康研究开展的一种模式，是对传统临床试验的一种有前途的补充和扩展。
