草根团体:被商界遗忘的推广利器
随着越来越多的人要求将自己的症状添加到正在进行的小组研究中,这一网络社区迅速扩张。目前,成千上万的小组成员正在通过这个网络小组就数百种健康状况分享自己的经历。CureTogether目前正同几所高校进行研究合作。德雷塞尔大学(Drexel University)综合生物信息学中心(Center for Integrated Bioinformatics)的威尔•丹皮尔正利用匿名的CureTogether数据建立一个治疗预测系统。用户在系统中输入自己的症状后,系统就会根据数据库中具有相同症状病友的有效治疗方案,预测什么样的治疗方案最可能见效,目前这套系统的准确度约为80%。 在加州大学戴维斯分校,阿普丽尔•阿姆斯特朗及其团队正在将CureTogether的皮肤病数据与已发表的研究数据进行比较,以判断CureTogether数据对总体人口的代表性。这种对比有助于证实CureTogether是否可以作为一个准确可靠的工具用于未来的研究。 现在,量化自我在世界各地都有活动小组,它们通过一个共享的网站互相联系。量化自我的网络平台现在还包括卡迈克尔和《连线》(Wired)杂志记者凯文•凯利和加里•沃尔夫管理的博客。 创立至今,成员们已经为彼此创建了初级读本、视频和指南。这个社区,或曰生态系统,汇集了大量来自各地的参与者。这个社区主持会议和研讨会。蒂姆•费里斯是创始小组的活跃成员,当初他在为自己的书《每周健身四小时》(The 4-Hour Body)进行实验时,也曾向小组成员寻求反馈。目前,CureTogether和HealthTap公司共同赞助量化自我网站;HealthTap公司是一家为用户量身定制个人健康信息的企业。 量化自我网站的草根活动为群体生态系统提供了一个有力例证。群体生态系统的广泛活动很大程度上是自发的,由参与者的共同热情所驱动,但没有任何明确定义的“中心”来组织这些努力。最著名的群体生态系统包括极限运动爱好者,如冲浪者,以及职业业余活动——汇聚对科学抱有热情的人,受过专业训练的人,抑或只是对这一领域感兴趣的人,都能参加。 这种很大程度上自发而成的社区受到快速学习和提高的愿望驱使,走到了一起。参与者在线上和线下彼此建立联系,分享各自的经历和困难。 由于这些社区缺乏明确的领导且高度分散,因此很容易被企业忽视。然而,它们能够非常有效地联系和动员热情高涨的参与者,这些参与者动力十足,往往会非常积极地支持与自身利益相一致的项目。 企业应该效仿23andMe公司帕金森氏症项目借助量化自我成员的做法,利用这些现有的群体生态系统。这些社区的成员联系密切,这种联系甚至超越了小团体和某一运动的范畴。公司的相关项目可以借助他们迅速将消息传播开去,同时吸纳他们的专长和热情。 译者:Qian |
The community quickly expanded as people asked that their conditions be added to the ongoing group studies. Now, thousands of members share their own experiences of hundreds of health conditions. CureTogether is now collaborating on research with several universities. Will Dampier at Drexel University's Center for Integrated Bioinfomatics is using anonymized CureTogether data to build a treatment prediction system. When someone enters their symptoms into the system, it will predict (currently with about 80% accuracy) which treatments are likely to work best for them, based on what has worked well for other people with the same symptoms. At the University of California Davis, April Armstrong and her team are comparing CureTogether's skin disease data against published research to determine how representative CureTogether's data is of the general population. This could help validate CureTogether as an accurate, trusted instrument for future research. Quantified Self now has groups around the world that are linked to each other through a shared website. It now includes a blog moderated by Carmichael and Wired magazine writers Kevin Kelly and Gary Wolf. Along the way, members have created primers, videos, and guides for each other. This community, or ecosystem, brings together large numbers of diverse participants across many locations. It hosts meetings and conferences. Tim Ferriss, an active member of the original group, tapped members for feedback as he was conducting experiments for his book, The 4-Hour Body. Now, CureTogether and a firm that personalizes health information for individuals called HealthTap sponsor the Quantified Self website. The Quantified Self grass-roots initiative provides a powerful example of a pack ecosystem. Pack ecosystems represent broad initiatives that are largely spontaneous, driven by a common passion among a group of participants without any clearly defined "center" to organize the efforts. Some of the best known examples of pack ecosystems include extreme sports enthusiasts like big wave surfers, or "pro-am" (professional-amateur) initiatives that bring together people who have a passion for science, whether the participants are professionally trained or simply have an interest in the field. These largely self-organized communities come together, driven by a desire to learn faster and improve. Participants connect with each other in person and online to share their experiences and challenges. Because they lack clearly defined leadership and are so highly distributed, these communities can escape the radar screen of companies. Nevertheless, they can provide powerful ways to connect with, and mobilize, deeply passionate participants who are highly motivated to support initiatives that align with their interests. Companies ought to take advantage of existing pack ecosystems like the way 23andMe Parkinson's initiative involved those in the Quantified Self movement. Members tend to become highly connected, even well beyond the group and the larger movement. They can help spread the word about a company's related projects and contribute their own expertise and passion. |