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大数据能治愈癌症吗?

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尽管大数据有潜力治愈癌症的言论甚嚣尘上,但“白宫抗癌登月计划特别小组”(White House’s Cancer Moonshot Taskforce)的执行董事格雷格·西蒙对此表示怀疑——至少现在不行。

上周三在圣迭戈的《财富》头脑风暴健康大会上,西蒙问道:“什么大数据?我们的健康系统里面有数据,基本上仅供内部交流使用。我知道一些你们不知道的。你们也知道一些我不知道的。如果我需要知道你们知道的,我就会给你们打电话,发邮件。你们则会把信息传给我。”

他继续道:“大数据是人人都喜欢的热门概念。但在医疗领域,我们的信息仍然十分匮乏。”他指出,尽管早在20世纪20年代,美国就建立了记录每一笔股票交易的数据库,但许多病人甚至现在都没有自己的个人医疗记录。

西蒙的机构正是许多致力于解放医疗数据的组织之一。今年6月,美国建立了储存基因组和临床数据,供研究者使用的数据库Genomic Data Commons。对此,他认为成效一般。数据库如今从癌症和肿瘤基因图谱(Cancer Genome Atlas)处获得了3.2万人的原始基因组数据——这比6月建立时的1.4万人已经多出许多,而且很快就将收入几十万人的数据。而自6月以来,这些数据的访问量已经达到50亿次。

西蒙把这个称为“好消息”。坏消息呢?美国政府建立癌症和肿瘤基因图谱时,投入了1亿美元从5万人处获取数据。然而,其中2.4万人的数据如今已经不可用了。

西蒙表示:“所以,大数据目前就像坏数据。数据库在建立时,没有依照病理学和医学标准,也不像我们收集财经和天气数据一样,随时随地都有数据传来。”

他也谈到了大数据在抗击癌症上的前景:“它会起到作用吗?会的。但是我们必须改变信息共享的文化,因为我们共享信息的态度,已经远远落后于我们共享信息的能力。”

While there’s a lot of breathless talk about the potential of big data to do just that, Greg Simon, the Executive Director of the White House’s Cancer Moonshot Taskforce, is a skeptic—at least for now.

“What big data?” asked Simon speaking at Fortune’s Brainstorm Health conference in San Diego Wednesday. “We have in the health system, what is basically insider trading. I know something you don’t know. You know something I don’t know. When I need to know what you know, I call you, I email you. You fax me stuff.”

He continued: “Big data is the big yellow object that everyone is in love with. But we still live in an information scarce medical world.” He noted that while the U.S. has a database of every stock transaction dating back to the 1920s, many patients can’t even liberate their own personal medical records.

His organization is one of many working to make medical data free (or freer). And of the Genomic Data Commons, a database introduced in June to pool genomic and clinical data and make it available to researchers, he reports modest success. The Commons now holds the raw genomic data, from the Cancer Genome Atlas, of 32,000 people—up from 14,000 at its June launch (it will soon be several hundred thousand people). And that data has been accessed 5 billion times since June.

Simon qualified that as “the good news.” The bad? When the government launched the Cancer Genome Atlas, it spent $100 million to get data from 50,000 people. Of that, data from 24,000 people was unusable, he said.

“So big data is in the middle of bad data—which is being created by a lack pathology and medical standards, and the lack of ubiquitous, instant data transmission like we do with financial and weather data,” Simon said.

He added of big data’s prospects in tackling cancer: “Can it make a difference? Yes. But we have to change the culture of sharing information, because our ability to share has far outpaced our attitude about sharing it.”

作者:Erika Fry
译者:严匡正

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