Health data and privacy--Looking without looking?

經(jīng)濟(jì)學(xué)人6月刊

The pandemic has sparked a new way to study sensitive medical records

This combination, not requiring their own copies of a patient’s data and leaving a log of every action they took, made it easier to trust OpenSAFELY. Dr Goldacre’s system has even brought Britain’s fiercest privacy advocates on board. MedConfidential, a group that focuses on the confidentiality of medical records, has stated its support for this approach. “It was designed and built to promote both research and patient confidentiality at the same time, rather than suggesting they’re opposites,” says Sam Smith, one of the group’s co-founders. John Chisholm, who chairs the ethics committee of the British Medical Association, a doctors’ trade union, said that the study contained “hugely valuable information about risk factors” for death from covid-19.

This kind of research, mining medical records for patterns which might help serve the provision of health care, is still in its infancy. But it is most advanced in Britain, for two reasons. The first is that the single medical market of the NHS has created huge patient-record companies like TPP. The second is that the NHS’s norm of GPs being the first point of call for health care means that they have become a catch-all for medical data, and hold the richest, most unified data sets. In China, for instance, people tend to go directly to hospital when they are ill, rather than to visit a GP. Scandinavian?countries do have joined-up records, and are often the subjects of medical-research projects for that very reason. But their small, homogenous populations make them less than ideal from a research perspective. The American system, meanwhile, is fragmented?across a zillion?private providers, though the health care system of the?Veterans?Affairs?department does have a large number of people in a unified arrangement.

in its infancy?在初始階段??NHS：National Health Service?英國的醫(yī)療服務(wù)系統(tǒng)

Scandinavian /?sk?nd??ne?v??n/：斯堪的納維亞的

homogenous /h??m?d??n?s/同質(zhì)的；同類的 ??

zillion n. /?z?lj?n/ a very large number 很大量

fragmented /fr?ɡ?ment?d/ adj. 片斷的；成碎片的?v. 分裂（fragment的過去分詞）；使成碎片

veteran n. /?vet?r?n/ ?1.a person who has a lot of experience in a particular area or activity 經(jīng)驗豐富的人；老手? 2.( also informal also NAmE also vet ) a person who has been a soldier, sailor, etc. in a war 退伍軍人；老兵；老戰(zhàn)士；老水兵??war veterans 經(jīng)歷過戰(zhàn)爭的老戰(zhàn)士

For now, therefore, Britain remains ahead. Dr Goldacre says it is “the only country on the planet with the scale of data needed to deliver these analyses”. And new challenges are coming. The team will look at the impacts of covid-19 on children, and the potential protective effect of?inhaled?steroids. OpenSAFELY is also beginning to work with other health-record firms besides TPP, to extend the range of data available for analysis.

If OpenSAFELY’s approach continues to work as it is extended in this way, others will surely follow suit. Dr Goldacre and his collaborators have made this easy by leaving a trail of tools, in the form of open-source software that can be downloaded free, by anyone, from GitHub, a popular code repository. That code may be tweaked to run any query on any kind of database.

Github：社交編程及代碼托管網(wǎng)站

tweak ?/twi?k/ ?

1.?to pull or twist sth suddenly 扭；擰；扯??She tweaked his ear playfully. 她擰他的耳朵逗著玩兒。

2.?to make slight changes to a machine, system, etc. to improve it 稍稍調(diào)整（機(jī)器、系統(tǒng)等）?I think you'll have to tweak these figures a little before you show them to the boss. 我想你得略微改動一下這些數(shù)字再讓老板過目。

The broad adoption of this methodology would have big implications. Electronic-health-records systems would?cease to be mere stores of data, and would start to become active pieces of the infrastructure underpinning?medical research, shifting with the needs of science. This would be particularly important for the development of medical artificial-intelligence, which requires large quantities of well curated?data in order to learn about ailments?with sufficient accuracy.

cease ?v. /si?s/ ?( formal ) to stop happening or existing; to stop sth from happening or existing （使）停止，終止，結(jié)束? ?Cease to be 不再是

underpinning /??nd??p?n??/n. 基礎(chǔ)，基礎(chǔ)材料；[礦業(yè)] 支柱，支承結(jié)構(gòu)；支撐

cur·ate n. ?/?kj??r?t/ ?（某教區(qū)的）助理牧師?THE/A ?CURATE'S ?EGG??( BrE ) something that has some good parts and some bad ones 瑕瑜互見之物；好壞兼有之物

ail·ment n. /?e?lm?nt/ ?an illness that is not very serious 輕病；小恙

? childhood/common/minor ailments 兒童期╱常見╱輕微小病

Covid-19 will not last for ever. The cover of national emergency will eventually pass. Those who wish to study health records in future will need more specific justifications than the?sweeping permissions offered by?COPI notices. But the OpenSAFELY team has shown that it is possible to get interesting results without copying data and without asking anyone to trust them with a large, sensitive data set. In doing so, they may have made those justifications a little easier to find. ?

sweeping adj. /?swi?p??/ ?

1.[ usually before noun ] having an important effect on a large part of sth 影響廣泛的；大范圍的；根本性的 ?sweeping reforms/changes 全面改革；徹底變化

2.[ usually before noun ] ( disapproving ) too general and failing to think about or understand particular examples （過分）籠統(tǒng)的；一概而論的 ?a sweeping generalization/statement 籠統(tǒng)的概括；一概而論的說法

3.~ victory a victory by a large number of votes, etc. （在投票等中的）大勝，全勝

4.[ only before noun ] forming a curved shape 弧線的；彎曲的 ?a sweeping gesture (= with your hand or arm) 揮動的動作