From: Adam Shostack <adam@bwh.harvard.edu>
Date: Wed, 24 Aug 94 11:15:27 PDT
To: shamrock@netcom.com (Lucky Green)
Subject: Re: Anonymous questionnaires
In-Reply-To: <199408241524.IAA26120@netcom7.netcom.com>
Message-ID: <199408241814.OAA02922@walker.bwh.harvard.edu>
MIME-Version: 1.0
Content-Type: text/plain


Lucky Green:

| My partner is a participant in a long term psychological study. I have been
| asked to fill out a questionnaire to aid in this study. Some of the
| questions address issues that I would never answer non-anonymously. After
| speaking with the research director, I ended up with the following problem:
| is there a way that would allow the institute to
| 
| 1. Correlate my answers to the answers of my partner.
| 2. Verify that I have indeed sent in a filled out questionnaire (and send
| me a check for participating).
| 3. Allow a supervisory agency, such as the U.S. Department of Health and
| Human Services, to verify that the researchers did not just make up all the
| data - that is to allow an audit.
| 4. Protect my privacy by making it impossible to correlate my name to the
| answers given.
| 
| I would very much like to help to advance medical knowledge, but am
| concerned what might happen once the institute is forced to hand over all
| accumulated data to the Kommunal Kare Kontrol Kommittee under the Health
| Care and Crime Prevention Act of 1998.

	Correlation is easy; assign people consecutive numbers or
somesuch.  If both participants are anonymous, no problem.  Could you
bring by the questionnaire by hand, in exchange for cash?  If not, how
about a money order and a PO box?

	The audit part of this is the tough part.  Would the HHS care
to agree to a broadcast means of verification?  Would participants 44,
71 and 94 please come into the re-testing center to verify their
participation?  There could be a zero knowledge proof of some type to
demonstrate that you are really patient 94.

	I doubt that the HHS would be agreeable to that.  Might want
to phone your local ACT-UP chapter, if you have one.  AIDS activists
tend to be privacy nuts, and they may have protocols for anonymous
testing/surveys.


Adam