Internet2 and step one complete!

["admin" <admin@worldccr.org>]

I2 AND STEP ONE NOW COMPLETE!

For those of you who have fretted, worried, and pre-occupied yourselves with concerns about protection of private medical information, good news arrived, yesterday, February 9, 1999.  Internet2 is now operational, and the world is better for it.  To the taxpayors of the United States, your thank you note is posted on Internet2's home page, but you'll be hard-pressed to find it!

All the taxpayors in this grand country can pat themselves on the back for providing Internet 2, in all its splendor, to - - - .  Well, actually, this network is a "closed Internet" [that word, Internet is used loosely, even fraudently, I think].  To access it, you have to be part of a federally-funded agency, university, or a very big corporation, or, in some privileged position within the technology sector.  This Internet, which, I think, is the one that was hyped by Gore, especially, is the one that will "open the doors to everyone school child in America".  As it turns out, this Internet is an Intranet/Extranet that is designed to be separate from the Internet you and I are familiar with.  This "closed" network is a network that will contain its users, participants, and control the flow of information to the general public.

Have a research question?  Don't expect to find answers on the Internet, but do expect frequent alert messages directing you to Internet2 for further information.  This brings us to the topic of confidential information.  What better place to hold confidential information than on an Internet that is separate, "closed", and used only for research, governmental work, and of course, housing and protecting valuable information.

This network is ideal for a national health database, eh?  This network is ideal for dossiers on each and every person in the U.S.  And, protected by its very nature of being "closed" to individuals without proper authority.  The insurance companies, HMO's, employers, and all who would abuse private information on individuals are excluded.

This extraordinary new governmental agency created by the taxpayors does not have a watchdog group, does not have accountability, and does not have the blessing of the Public, other than a thank you note which most likely has been posted on Internet2, if you want to see it.


"Sour grapes" aside, a "closed" and secure network is what has been one of the primary goals of privacy advocates for several years.  It is here now, and I for one, hesitate.  Until more details are available, I guess I will continue to prefer a different approach.  Anyone interested in joining to utilize XML, GMP-level clinical research requirements, and FDA accountability?  It works, and it doesn't scare the living daylights out of you and I.

Finally, note that the premise with Internet2 begins with the assumption that "flow" of information is not part of the definition of the issue of patient privacy.  Patient privacy is achieved when a secure location for information is identified.  What happens after that is something altogether separate.  For example, if a patient has a medical record in a drawer in his/her physician's office, under lock and key, it is quite enough protection.  If a patient has a medical record located in a file on Internet2, safe and secure, it is quite enough protection.  When information from that file is released, it occurs under quite honorable conditions.  My question, still not acknowledged, remains, "Why can't I, as an individual, control the "flow of that information?"  "Why does the insurance company get the information before I do?"  "Why does the employer get that information before I do?"  "How does Internet2 address these questions?"  If I look to the past for clues to the future,!
 I believe I am on safe ground to bet Internet2 simply creates a new hurdle to overcome in an effort to protect the privacy of medical records.