Law in the Internet Society

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BrendanMulliganSecondPaper 7 - 09 May 2010 - Main.EbenMoglen
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Establishing a Private, Workable Online Medical Database

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-- By BrendanMulligan
 In its 1999 report, “To Err is Human: Building a Safer Health System”, the Institute of Medicine claimed that preventable medical errors cause as many as 98,000 deaths per year in the United States and upwards of $29 billion annually in lost income, lost production, disability, and additional health care costs. According to the report, decentralization and fragmentation of the health care system are major causes of these errors. Providers lack access to complete patient data at the point of care. Fewer than 2% of the nation's 5,000 non-VA hospitals have what could be considered a full-fledged system.
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 This rule is indefensible even with paper files but increased, easy, and remote access to personal health data make it particularly dangerous. As we move towards integrated EHR system, this provision must be changed. Congress could start by revisiting the House’s 2004 STOHP Act, which makes consent the core of disclosure. In effect, the change would require individuals to give or withhold consent before their personal health information is used or disclosed before each routine purposes, instead of a one-time consent as in effect now.
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You are entitled to restrict access to your paper if you want to. But we all derive immense benefit from reading one another's work, and I hope you won't feel the need unless the subject matter is personal and its disclosure would be harmful or undesirable. To restrict access to your paper simply delete the "#" on the next line:

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Note: TWiki has strict formatting rules. Make sure you preserve the three spaces, asterisk, and extra space at the beginning of that line. If you wish to give access to any other users simply add them to the comma separated list

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There are really two topics here, and it would be worth the effort of choosing between them. The HIPAA issue you raise is a matter subject to political deadlock. Any legislation that tries to move in the area will immediately be subject to encrustation with all the other conflicting claims by all the other parties who believe that free market capitalism means that government should never do anything that hurts their business, which has generated enough money to put a cousin or a brother in the Senate. All you can really do is to reprint earnest staff reports that will never get enacted. VistA? , on the other hand, can be developed, as you point out, by executive action alone, if the Administration is prepared to take some heat from people whose proprietary software businesses would be wiped out by it. There are technical issues you should have described to some extent, and you should have discussed OpenVistA? , which is the Free World's attempt to meet some of those technical problems. You might also have discussed the possibility of following in the steps of Finland, which now runs its national system of hospitals on its version of the VistA? we developed and put into the public domain for them. Obviously I think this aspect of the situation would make the VistA? portion of the essay the one to expand, but either way, you will do a far more effective job if you don't have to give away half the space.
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Revision 7r7 - 09 May 2010 - 23:23:56 - EbenMoglen
Revision 6r6 - 25 Mar 2010 - 06:01:46 - BrendanMulligan
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