Surf's up! Protecting the privacy of health information on the Internet: we need new privacy laws and better encryption of information.

The Internet is a ready source of medical information, but most patients do not realize that as they surf it, they leave behind information about themselves that creates a personal profile as unique as their DNA. This personal information becomes public knowledge that can be bought and sold by commercial interests. Physicians, too, are largely unaware that the e-mail messages they send to patients can be intercepted and that electronic medical records are also vulnerable to being accessed and can be distributed worldwide, once compromised. It is a fallacy for patients to assume that the Internet protects their privacy. Every illness or drug name that they enter into a search engine is being tracked. Discussing their human immunodeficiency virus status in an online forum is the electronic equivalent of making a public announcement in a mall. Internet users are being watched surreptitiously through a variety of technologies, such as “spyware,” that is embedded in free games and that monitors what users download and what they run on their computer. Advertisements frequently contain code that tracks what people type when they are surfing the Internet and what kind of information they are looking at. Web sites can track what users are doing by using “cookies,” small bits of information placed onto computers. And electronic “bugs” can send every word that Internet users type on their computer to a hacker; these bugs can be included in users' e-mail messages without their knowledge. This is not just scare mongering. Although the US government insists on the privacy of medical records, such privacy is breached regularly.1,2 Recent high-profile cases include the publication by Eli Lilly Company of the names of patients taking fluoxetine hydrochloride (Prozac),3 the public posting of pediatric psychiatric information at the University of Montana,4 and the hacking of 5,000 patient records at the University of Washington.5 And this is only the tip of the iceberg.5 So we are left with a dilemma. How do we honor the privacy that users expect without limiting their access to health information on the Internet?6 Present laws and assumptions are inadequate. The current laws, such as The Health Insurance Portability and Accountability Act of 1996, protect only a portion of online medical information.7 We cannot assume that users are able to protect themselves (see, for example, the web site of WebSideStory, Inc, which states that it provides “e-business intelligence services”).8 The current steps being taken by some Internet sites to improve privacy, such as posting their privacy policies and offering users the ability to “opt out” of having their personal information shared, seem promising.9 However, in one systematic study, 23% of commercial health sites did not post a privacy policy, and most written policies are incomprehensible to most users.10,11 Even when they are present, privacy policies and opt-out clauses are no guarantee that a person's information is secure. Companies often violate their own privacy policies, rendering them useless.12 In addition, because compliance is voluntary, there is no enforcement mechanism.13 There are three possible solutions to the problem of protecting patients' electronic information. First, there should be a legally mandated “opt-in” policy for health information; this would require that users actively give permission for their online information to be distributed. This is the same protection that is given to other medical information. Current opt-out policies assume that most users would default to having their health information shared, which is not the case. Second, all electronic or web-based medical information should be encrypted. This can be done seamlessly so that it would be transparent to the intended user, and it would mean that unauthorized hackers would view only gibberish. Inadvertently released records would be unintelligible without the proper key. Current encryption schemes are up to the task; many require a sophisticated mainframe computer to break the encryption. Third, the release of protected electronic medical information should be made a criminal or civil offense. This would change the current paradigm by signaling that this information is of value and considered important enough to protect. As advocates for patients, physicians should insist on the same level of protection for online medical profiles as is given to other confidential health information. In many cases, what is entered online contains the same level of detail as what is in an office record (see, for example, www.MDExpert.com or www.PersonalMD.com ). A few simple steps would help. Physicians can inform patients that any information they provide while surfing the Internet is public knowledge. They can also encrypt their e-mail messages to patients or use any another technique to ensure e-mail security. Finally, physicians can make sure that their personal and office computers are protected. Hackers randomly attack thousands of computers at a time. These hackers can place a “trojan horse” (or other software) on a computer that allows them to come back and peruse the system at will. My home computer, which has a dial-up Internet connection, has been hacked into (and successfully defended) hundreds of times. If you use a high-speed cable modem or DSL that is always connected, your computer is at even more risk of being attacked by hackers. Computer security is not something that most computer users tend to themselves. However, a system administrator should be able to help. If physicians use their home computer to communicate with patients, they should make sure that it, too, is secure. Table 1 Finding out more about privacy of electronic information Sites with information about electronic privacy www.healthprivacy.org www.privacyfoundation.org www.understandingprivacy.org www.primers.net/security www.junkbusters.com www.grc.com Sites with free or cheap tools for protecting privacy www.grc.com www.webwasher.com www.pgp.com www.zonelabs.com www.becky-users.morelerbe.com/spyblocker/ View it in a separate window Many tools are available that will defeat the online tracking of personal information and that will maintain the integrity of computers and e-mail, and many are free or very inexpensive (see box). We cannot and should not reverse the trend toward the computerization of medical information. However, as with previous industrial revolutions, technology has outpaced social evolution. Instead of being Luddites who smash power looms, physicians should insist that the rules of society catch up with the revolution in electronic medical information.