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Coming to Health Care: The Challenge of Privacy 2.0

by Fred Fortin

Lawrence Lessig wrote in Free Culture, that “privacy was assured because of the inefficient architecture for gathering data and hence a market constraint (cost) on anyone who wanted that data.” Privacy was guaranteed to us by a kind of economic “friction” and system inertia. Today that friction has all but disappeared and the privacy protection it once offered along with it.

Given that health care is a late bloomer to new media and the Web 2.0, some of the friction Lessig talks about may still be helping to secure private health information. Since this confidential information predominately resides today in slow moving, conservative institutions that dominate health care delivery, there is still time to consider the threats to privacy that Jonathan Zittrain outlines in his new book, The Future of the Internet (and how to stop it). He writes:

Cheap sensors generatively wired to cheap networks with cheap processors are transforming the nature of privacy. . .

The heart of the next-generation privacy problem arises from the similar but uncoordinated actions of individuals that can be combined in new ways thanks to the generative Net. Indeed, the Net enables individuals to compromise privacy more thoroughly than the government and commercial institutions traditionally targeted for scrutiny and regulation. . .

The essence of Privacy 2.0 is that government or corporations or other intermediaries need not be the source of the surveillance. Peer-to-peer technologies can eliminate points of control and gatekeeping from the transfer of personal data and information just as they can for movies and music. . .

Peer-leveraging technologies are overstepping the boundaries that laws and norms have defined as public and private, even as they are also facilitating beneficial innovation. . .

The slippery slope that privacy now sits upon is coming to health care.

Most of the privacy debate we see now in health care is focused on what Zittrain would call Privacy 1.0: how to impose rules and sanctions regarding things like disclosure, notice, encryption etc. upon recognized institutions and professional groups and medical workers. And while we hear calls for a new national privacy framework that will apply to the information technology industry (Google, Microsoft) it centers on the protection and control of electronic or personal health records. Again the emphasis is on formal records and institutions.

Privacy 1.0 is still a necessary front to secure if we are to modernize the health care system. But it does not get at the threats to privacy that Zittrain contemplates.The recently touted Congressional bill S 1693, the “Wired for Quality Health Care Act’ may, if passed, provide various forums for discussion of Privacy 2.0, but the bill itself seems oblivious to the implications of these kinds of issues.

So how do we manage ‘consent’ when it comes to private health information in this social media environment? This is one hell of a key question that needs to be addressed, and one that many are afraid to ask less it result in some draconian measures applied to all social media.

Do we have to accept a diminished private space to gain the benefits of social media? Will confidential health information become the entertainment for the ‘monitorial citizen’, part of the banal collective din of spectators who are fast becoming the new surveillance force in contemporary society? The values that are “animating our concern for privacy” are changing according to Zittrain, noting the age gap between those who use social media and those who shun it.

Zittrain does pose some ideas at least on how to signal the ‘intent’ of patients when it comes to their health information through tags, and embedded codes. But they pale in comparison to the zero-tolerance controls now demanded by US laws and regulations.

Nicholas Carr argues in The Big Switch, that contrary to popular sentiment, the technologies that make up the Internet are not those of emancipation, but are at core “technologies of control.” As social media begins to invade health care we will be able to test the capability and nature of that control. So hang on.


[…] (Cross posted at World Health Care Blog) […]

[…] World Health Care Blog looks ahead to the coming privacy issues as health care (finally) goes internet: So how do we manage […]

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