草根团体：被商界遗忘的推广利器

    很多企业往往倾向于将最重大的活动限制在公司内部这个范围内；它们经常从零做起，认定应该对自己的计划严加保密，等到某一天才发布这个石破天惊的消息。事实上，更多企业应该考虑借助来自外界的热情帮助和支持。

    外界的民间活动能够帮助企业锁定已经深入参与某一特定事务的人，并与他们建立联系，通过其他渠道通常难以识别和接触到这些人。以23andMe公司为例，这家公司致力于新兴领域个人遗传学的工作，并已获得Google公司的资助。23andMe正在利用自发的自跟踪医疗保健活动，来推动自己的商业目标。

    2009年，福克斯帕金森氏症研究基金会（Michael J. Fox Foundation for Parkinson’s Research）、帕金森氏症研究所及临床研究中心（Parkinson’s Institute and Clinical Center），以及23andMe公司联手，希望能够发现最可能罹患帕金森氏症的人群。他们的目标是，通过邀请公众参与研究，从而更快得到结果，并通过在线方式进行大部分研究。此外，对于那些通过该项研究了解到自己有较高患病风险的人，该联合研究组织希望帮助他们做出更明智的医疗保健选择。

    为了发起23andMe帕金森氏症项目，主办方公开邀请所有帕金森氏症患者参与进来。前10,000名注册并同意在研究期间提供自己健康状况和生活方式信息的患者只需25美元即能获得自己的基因组“地图”，这项服务目前的标准收费为400美元。实际上，活动的组织者通过这种方式利用群众的力量，从而在更短时间内获得更大的研究样本，并通过自我跟踪方法更快地获得研究成果。这些结果可以跟通过研究者和研究对象之间的互访取得的结果结合使用。

    这项研究得到的一项结果令人振奋，由于同病相怜，这些帕金森氏症患者在网上社区形成了关系紧密的小团体。例如，研究参与者相互鼓励，根据自身的检验结果积极采取预防措施，并在网上汇报自我跟踪的结果。在采取预防措施的同时，他们会比较彼此的记录，并在网络讨论区中向专家提问。他们快速学习的成果也会进行跟进并提供给其他参与者参考。

    这个帕金森氏症研究项目的灵感来自于旧金山湾区一项更为广泛的草根活动，这个名为量化自我（Quantified Self）的集会动力十足，势头迅猛。这个松散的活动组织成员聚会，彼此分享各自的经历，话题则涉及疾病、情绪、认知等等广泛的领域。组织成员会用自己设计的数码设备或电脑、手机、监控设备，甚至是纸笔，记录自己的发现。帕金森症研究计划通过提供优惠基因组绘图服务及与病友分享结果的机会挖掘了这些活动蕴藏的热情和兴趣，带动了项目的推广。

    亚历山德拉•卡迈克尔及其丈夫丹尼尔•瑞达加入了旧金山的量化自我组织，学习如何追踪记载卡迈克尔的长期慢性疼痛症，并发现了可以改善其病情的方法；瑞达曾是分子生物学家。不久之后，他们就推出了网络小组CureTogether，供患有慢性疼痛症的人记录并分享自己追踪记录的结果。

    Companies often tend to keep their biggest efforts internal, and they frequently start from scratch, with the idea that they ought to keep their plans close to the vest until the time comes for a splashy announcement. But more businesses should consider using the help and support of passionate outsiders.

    Grassroots efforts can help a company find and connect with people who are already deeply involved in the topic and are often difficult to identify and reach by other means. For example, 23andMe, Inc., a company working in the burgeoning field of personal genetics with financial backing from Google (GOOG), has built on the momentum established self-tracking healthcare movement to support its own business goals.

    In 2009, the Michael J. Fox Foundation for Parkinson's Research, the Parkinson's Institute and Clinical Center, and 23andMe joined forces to discover who was most likely to get Parkinson's disease. Their goal was to get results faster by inviting the general public to participate in the study and to conduct much of the research online. They also wanted to help those who learned, through the study, that they had a higher chance of getting the disease to make smarter healthcare choices

    To launch the 23andMe Parkinson's initiative, the organizers publically invited anyone with Parkinson's disease to participate. The first 10,000 to sign up online and agree to provide health and lifestyle information over the course of the study received their genomic "map" test for $25, instead of the standard $400 charge. In effect, the sponsoring groups were crowd-sourcing study subjects to get a larger sampling more quickly, using self-tracking methods for faster research results. These results could be used in conjunction with studies based on subjects making in-person visits with researchers.

    One exciting outcome of the study was that participants formed tight-knit groups in the online community based on their common experience with Parkinson's disease. For example, they were encouraged to take preventative actions based on their test results, and report their self-tracked findings online. The participants compared notes with each other while taking these preventative actions and asked experts questions in online discussion forums. The results of their accelerated learning were also tracked and made available to other participants.

    The Parkinson's research project was inspired by the energy and momentum of a broader grassroots initiative that grew out of a San Francisco Bay Area Meetup group called Quantified Self. This loosely organized initiative hosts gatherings where members share their experiences related to topics as diverse as disease, mood, and cognition, among others. To record their findings, they use digital gadgets they design or computers, mobile phones, monitoring devices, or just pen and paper. By offering discounted genomic mapping and the opportunity to share results with others, the Parkinson's initiative tapped into the enthusiasm and interests of this existing movement to help spread the word.

    Alexandra Carmichael and her husband Daniel Reda, a former molecular biologist, joined Quantified Self in San Francisco to learn how to track Carmichael's long-term chronic pain and discover ways to improve her condition. Soon after, they launched CureTogether, an online group where those with chronic pain could document and share the results of their self-tracking.