From: "Dr. D. Kossove" <doctordee@telkomsa.net>
To: "LMS List" <L-M-SARCOMA@LISTSERV.ACOR.ORG>
Subject: research on the list  -- trying for a clear explanation for the non-science minded
Date: Thursday, January 15, 2004 5:05 PM

Okey dokey, here is my annual speechifying about medical research on
the LMS list.

FIRSTLY, many of you don't know much about me.  I am a specialist
pediatrician, but I am also a scientist.  So I do know about doing
research.    I have been doing original research since I was 18. And
have published.  I actually won a national prize for an original
research paper I did solo.  Which has been described as a seminal
paper in the field.

In fact, if you weren't so hung up on young males, you might realize
that you DID have at least one research scientist here, and have had
for three years.    Actually there are other people on this list
similarly qualified.  Agism and sexism aside, young males are not
any more likely to be effective in discovering a cure for LMS from
the list emails than older men and women.


To continue with comments from a recent letter:

>>I really think a brilliant young scientist should research our
List because so much can be learned here.  Far more than from the
MedJournals.(my opinion at least). <<

Your research is only so good as your data.  The data here is
usually given by people without any scientific or medical
background, with inexact terms, often improperly used.  Just what
original research data do you think the brilliant young scientist
would find?  Side effects of chemo?   Where mets occur? Don't just
be vague... tell me exactly where the data on this list is good and
can be used for research?   What research question can be answered
using this data?  Don't be vague and pretend that somehow some
patterns will show up that will be unique and not
reported in the literature already, and more reliably. You cannot
even identify the people who are reporting here except by email
address.   Furthermore, anyone can write anything about their
condition online and state it is true.  We have some very fanciful
accounts from at least one of our list members.  This is not
verifiable, reliable data.
Data is information systematically collected by an unbiased
observer, the researcher.  It is not a collection of random
self-reportings.

What you are learning from here IS often from medical journals.  The
entire www.leiomyosarcoma.info website was created from medical
journal articles.  We practice evidence based decisions here, and
there are references quoted for information posted.

The only valid original research that can be done on this list as it
stands now, is research about the nature of list-serves and how they
work.  Such research IS being done currently at ACOR courtesy of
funding from the Robert Woods Johnson Foundation, and Gilles
Frydman's foresight.

>> I may just send that suggestion to some of the colleges
researching on cancers... they just might like to give a new young
research scientist this for a research project.  He could make a
name for himself by discovering our cure...<<

There is no way that a cure for LMS will be discovered by a
scientist examining our email postings, however you kindly wish it
were so.  The "original data" on this website dealing with LMS is
actually better described as random hearsay self-reported from
untrained individuals.   The rest of the medical communications are
best described as evidenced based information from the medical
literature.

>>I'm sure the powers that be who control our MemberList would
welcome a scientist working on our project... and would let him in..
would I be right????<<

Whatever for?  Unless they were working on a project describing list
serve functioning?

We have scientists and doctors on this list.  At least six or seven
of them that I know about.  Many other good minds.
None of them come up with ... hey, let's discover a cure for LMS on
this list from the postings.

The powers that be are actually the listowners and Gilles Frydman
who owns ACOR.
They are more aware of what kind of data is needed for doing
research.

You don't remember a few months ago...  Someone also said.. OH the
doctors should be interested in everything my husband's been exposed
to, in order to find out what caused the LMS?
And Meg THorburn, who is an epidemiologst [and a brilliant young
FEMALE scientist] patiently explained that epidemiological research,
to be valid, could not be done using the list as it is.

There is, however, research ongoing on list server functioning at
ACOR.
That is a different project, and appropriate, because the data IS
the emails.

>>...  He and another onc went
to Utah and are going through all the mormon records there and doing
research.  I understand  the mormon records on individuals are very
detailed... I think they are looking for cancer patterns in their
lives.  That's all I know about it... But my thought processes
were.. Hey... we have some pretty darned detailed info here and we
have people who would gladly answer questions for a research
scientist....  Comments anyone?<<

There are detailed observations, measurements, labs, tests, by
trained observers, like in hospital records.... these are DATA.
That is what the two oncs are working on in Utah.

Then there are the emails with lots of details, often
miscommunicated, which describe how chemo is or whatever.  This is
not detail by a trained observer, it is not reliable or verifiable,
and 'research-wise'  it is just GIGO.  We cannot even identify the
person who sends the information, except by their email address.
This is NOT verifiable medical data and cannot be used
scientifically.

And the evidenced based medical information is already in the
medical literature.

We do have a lot of valid information here.
None of it is orginally discovered on the list.
All of it comes from either oncologists or medical literature.
AND what questions do you think a research scientist can ask these
anonymous people who can say anything they want, without any factual
backup?  That would yield reliable medical data?

Please search the archives for this discussion last year when a
couple of people wanted to take the member profiles and send them to
drug companies because they thought it would help the drug companies
make the right drugs.

~~~~~~~~~~
 When the life raft group did the research on Gleevec side effects,
they had the name and address and questionnaire filled out by
EVERYONE on their list.  People who did not fill out the
questionnaire were threatened with expulsion.  It was a difficult
project.  But it was done with controlled information, including
having confidential medical information.  It was controlled, and it
was organized.  It was not done on email postings.  And it was done
by the scientific and medical minds on the the Life Raft Group list,
not by an outside brilliant scientist of any age or gender.

~~~~~~~~~~~~

I would appreciate someone on the list explaining this perhaps more
clearly to the rest.
However valuable our information is to ourselves,
there is no way it is usable as medical research data.

it is disordered
it is unreliable in that there is no trained unbiased observer, all
the data comes from subjective feelings
it is not possible to check up on any statements
it is not possible to get any ancillary or verifiable information
there is nothing original in the information that has not already
been reported upon in the literature

~~~~~~~~~

in my professional opinion.

D. Kossove, AB, MSc, MD, DABP

Where we do have power on this list is in the power of donating our
tissue, and of deciding which doctors are better for treating us,
and which are worse.   I wish the ULMS people would organize about
doing something about the gyn oncs practice guidelines, or getting
ULMS treated outside the treatment arena of gyn oncs.   We are also
not organized enough to create clinical trials.

Together we are more, and more effective, than we are separately.

All correspondence is my personal opinion.  I am not an oncologist.
I am not practicing medicine online.  Provision of information is
for investigation and discussion with your doctors.
 