Just imagine how you’d feel if your private – and sometimes very intimate – details of your health were accidentally released on the Internet and your employer, insurer, neighbor and former partners were able to see the medication you’ve taken for mental health reasons or for sexually transmitted diseases.
One way to reduce this risk is to anonymize electronic health record data. A freereviewinGenome Medicine伊玛目渥太华大学的哈立德·厄尔,Ontario looks at current de-identification methods and suggests best practices.
This is a timely issue because electronic health records are being used more and more in clinically important research and they are likely to be key for some major breakthroughs in the diagnosis and treatment of disease. Universities and research centers have strict ethical rules relating to the use of this data and almost always insist on participants giving their consent. But obtaining consent can reduce participation rates and bias these data. Anonymization appears to be the most practical way forward.
El Emam uses the de-identification practices for two genomic research projects:i2b2(Informatics for integration of biology and the bedside) andeMerge(Electronic Medical Records and Genomics (eMERGE) Network to highlight current methods.The findings are
likely to be of great interest for researchers embarking on similar studies in
the future.
Mr. El Emam is using as the basis of his argument that he is a hypocrite and that he thinks everyone else should be too.
I think we have gone way overboard with “protecting” patient information. I don’t agree that people have the “right” to expect this, particularly in a socialized medical system, but really in any system.
The least defensible position is preventing public health personnel and anybody doing research from getting access to records and patient samples on demand. That idea, and the idea that people somehow “own” their cancers, diseases, what have you, after medical personnel have removed them is simply insanity.
这种荒谬的公共政策立场的后果是，事实上，其他人因不允许进入公共卫生和研究人员而被杀。
This position is not rational; it values embarrassment first. It is, in fact, absurd. It is a puerile policy constructed by windbags that has become a sacred cow without sensible debate.
Thank you for your comment on the paper and on the general issue of privacy and public health.
我认为需要考虑一些事情：（a）越来越多的证据表明患者本身正在采取隐私保护行为，因为他们担心如何使用健康信息（数字因管辖权而异，但例如在美国，受调查的成年人中有15％-17％承认向医生撒谎，不寻求护理，不透露某些信息，看到多个提供者），很大一部分提供者承认不包括医疗中的信息应患者的要求或提供不同的信息记录，并且（b）越来越多的证据表明，提供者本身不愿与公共卫生共享信息，因为他们不想危害医师患者的关系，并且因为他们担心如何一旦向公共卫生披露，就可以处理数据（我们刚刚在BMC公共卫生中发表了有关此文件的论文），这是在强制性披露的情况下得出的ATED以及发生严重爆发时。这些是当前的趋势，如果它们继续下去，那么将向公共卫生披露的有用信息较少。解决此问题的一种方法是去识别数据。有证据表明，这将使患者更愿意披露他们的信息以及提供者。
Therefore, this work, at the end of the day, is intended to help make more data available rather than restrict it. Without de-identification methods the trends are not supportive of more data disclosures.