Thursday, March 21, 2013

Show us the records

Well, I see from this morning’s newspaper that University of Minnesota officials say they have looked at all the CAFÉ study records and everything is fine: no irregularities, no duplicated “evaluation to consent” forms, and (presumably) no unsigned HIPAA forms.  But they are not letting anyone else look at the study records.  They want us to take their word for it.

It has been nearly two weeks since I filed a Data Practices Act request for all the “evaluation to consent” forms not just for the CAFÉ study, but for the CATIE study as well.  (Jean Kenney, who signed the forms, was study coordinator for both.)  I still have not received the forms.

Give the university’s reputation for taking action against its critics (the university filed a “notice to assess costs” against Mary Weiss, demanding that she pay the university $57,000) it is no surprise that the families of former study subjects are fearful.   But wouldn’t this controversy be easily put to rest if the university just made the redacted forms public, so that families could compare what the university says it has against what they say they have found in their own records?

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