健康應用資料為研究員帶來機遇和障礙大綱

Data from health apps offers opportunities and obstacles to researchers

健康應用資料為研究員帶來機遇和障礙

Researchers are eager to tap into the steadily expanding pool of health information collected from users by products like Fitbit, Clue, and the Apple Watch. But while these datasets could be a scientific treasure trove for scientists, they also pose ethical challenges that need to be addressed.

研究員正迫切利用Fitbit、Clue和Apple Watch等健康應用產品收集到的不斷穩定增長的使用者健康資訊。雖然這些資料庫對科學家來說可能是一份科學寶庫，但同時，它們也帶來了需要解決的道德挑戰。

"There are huge opportunities. I think that's the attraction," says Ida Sim, director of digital health for the Division of General Internal Medicine at the University of California, San Francisco. Sim explains that part of the appeal for scientists is that the apps and tech are designed to appeal to the general public. A commercial app or device with an easy, attractive interface is primed for long-term use by far more people than can usually be included in a research study. "As opposed to a clunky research wristband, which is ugly, and people won't wear it," she says.

“我們面臨著巨大機遇，我認為這是其特點之一，”位於舊金山的加利福尼亞大學內科綜合部的數字健康主任艾達·西姆（Ida Sim）說道。西姆解釋道，應用和科技旨在迎合大眾，這是吸引科學家的地方。一個商業應用或裝置，其介面簡單、有吸引力，已可以為大眾長期服務，其服務人數比一項研究所涉及的受試者更多。“這與研究所涉及的既笨重又不美觀的錶帶相反，沒人願意帶這種錶帶，”她說道。

Researchers are taking advantage of the better design of their corporate counterparts, and in some cases, companies are especially eager to collaborate. This spring, the period tracking app Clue offered funds to researchers hoping to use Clue users' cycle tracking data to answer scientific questions. The company had previously provided data to researchers who approached it directly, but the grants marked a formalization of their existing program.

研究員正利用企業同行設計的更好產品，在某些情況下，這些企業樂於合作。今年春天，經期跟蹤應用Clue為研究員提供資助，這些研究員希望利用Clue使用者的經期追蹤資料解答科學問題。在此之前，該企業已向直接聯絡的研究員提供了資料，但這些撥款標誌著現有計劃正式落實。

"It's been an evolving conversation," says Amanda Shea, research collaborations manager at Clue. "Our dataset is big enough now, and we have more of the proper protocols in place can ensure users aren't at risk through data sharing, that we can more actively participate in research."

“這是一場不斷提升的對話，”Clue公司的研究合作經理阿曼達·西亞（Amanda Shea）說道。“目前，我們的資料庫已達到相當大的規模，更多確保使用者不會因資料共享而面臨風險，且Clue員工可以更積極參與研究的協議也已就位。”

Unlike academic researchers, app companies like Clue are explicitly designed and have the resources to collect and maintain large amounts of data. On the other hand, commercial apps usually aren't designed for research, which demands predictable, transparently collected, and granular data. Sometimes, that means app-generated information is actually less useful to researchers, says Olivia Walch, a postdoctoral student studying mathematics and circadian rhythms at the University of Michigan.

與學術研究員不同，像Clue這樣的應用程式公司設計明確，且擁有收集和維護大量資料的資源。另一方面，商業應用程式通常不是為研究而設計的，因為研究需要可預測，透明收集和細化的資料。有時，這意味著應用程式帶來的資訊實際上對研究員並無多大用處，密歇根大學數學和晝夜節律專業的博士後學生奧利維亞·瓦爾希（Olivia Walch）說道。