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BRCA-L  April 1999

BRCA-L April 1999

Subject:

Two questions for the group

From:

"Virginia R. Hetrick" <[log in to unmask]>

Reply-To:

[log in to unmask]

Date:

Wed, 21 Apr 1999 10:46:07 -0700

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text/plain (84 lines)

Howdy, group --

Well, since we're about to start a new cycle, I'd like to propose two
topics of discussion that arise out of my reading some of the documents
related to the peer review and awards process.  Some of these thoughts
are not totally new for I have raised them with various members of the
program staff.  Others are new based on somewhat of a reinforcement of
the earlier thoughts.  Let me warn you that some of the discussion may
sound a little convoluted, but the questions I've arrived at are, I
think, quite clear.  Could we have a dialogue on these issues, please?

With those comments in mind .....

One of the things that arose last fall (1998) because I retired from
UCLA was the fact that I was identified in several documents as being
from UCLA.  The paperwork that I signed when I came on board at UCLA
constrained me from being identified as a UCLA employee except in
situations where my professional expertise for which I was employed by
UCLA was being used.  I am certainly not a medical professional.  So,
from that standpoint, my identification as an employee of UCLA was
inappropriate in the context of the BCRP.

In addition, once I retired, and am certainly not a UCLA employee, it
is absolutely inappropriate to be identified as a UCLA employee.  BTW -
we've solved this particular problem for my particular situation, but it
seems to me it needs to be addressed generically.

One of the things that I've found going through documents generated over
several years is that consumer reviewers from academic institutions or
medical centers are frequently identified in the documents by
institution while most consumer reviewers from non-academic
organizations are simply listed as advocates and their affiliations are
left unspecified.

However, I think the more important aspect of this issue is that it is
difficult to identify consumer reviewers in the public documents.  If I
were some auditor going through the list of participants in the peer
review process, I would have a very definite question as to why somebody
who appears to be an archaeologist is participating in the review
panels!  ;-)

It seems to me that ALL consumer reviewers whose names appear in public
lists should be listed by function (more about that in a moment) and
NONE of us should have an institutional affiliation shown unless we are
participating in the BCRP process as a part of our job function (I think
that's an impossibility, but I may be wrong).  It may be appropriate for
us to have our cities listed so as to show that we come from all over
the country.

The second issue is the one raised last summer about calling us
consumers.  I've reviewed all (I think) of the comments that were copied
to the list.  The feeling seems to be that we are advocates for the
patient community to the peer review panels.  This means that we are to
provide the perspective of breast cancer patients to the panels on which
we participate.  Particularly because a substantial number of us have
gone through Project LEAD training which, in some sense, validates our
position as advocates, it seems to me that we should be identified as
advocates.  However, when we arrived in Norfolk last year, it was clear
that this term has not been institutionalized as we were referred to as
consumers in most documents I saw on-site.

In fact, one member of the integration panel is identified in the 1997
awards book as a consumer and the other person in an equivalent position
is not identified as to position.

So, the questions are:

1.  What are your ideas on the way we're identified in the public
documents that are generated as a result of the peer review process?

2.  What are your thoughts about the appellation of people who sit in
our spots on the peer review panels (I presume that the folks on the
integration panel can speak for themselves ;-)?

What do y'all think?

vh
--
\ /     Virginia R. Hetrick, here in sunny California
 0      Voicemail:  310.471.1766  Email:  [log in to unmask]
 Oo     "There is always hope."
        My health site:  http://www.yana.org/hetrick
        My computer site:  http://home1.gte.net/drjuice
        Site of the month:  http://www.learnlink.emory.edu/peep/

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