What you should be concerned
Millard Johnson
> I
> personally hope NLM gives them a big grant to upgrade their
> hardware and put together a WWW presence or at least a gopher.
>
> It seems to me that this really has potential. We *should*
> be encouraging them. In this electronic age, there's no reason
> their volunteers can't be working outside Florida (well, I'm
> not up on my FLA Nonprofit tax law, so maybe there is a reason).
>
> How often have we complained on this listserv about the lack
> of coherent sources for patient education? About how expensive
> Infotrac is? There are a few sites, Montana's Healthline, etc.,
> but they're pretty sparse.
>
> I would like to see Med Help Int'l develop and get more
> sophisticated Internet software. I've always wanted there
> to be a place where really good pamphlets could be placed,
> where people could contribute to an index of patient materials,
> and where patient educators could have a forum. It would
> be nice if it were library-led, but if it turns out to be
> led by a merry band of volunteer doctors, so what? Better
> for credibility and fundraising, probably. (sigh.)
>
> Finally, I hope that Med Help hasn't gotten the idea that
> MEDLIB-L collectively hates them, and I'd like to suggest that
> this would be a good time for further fights to move into
> PERSONAL E-MAIL space and off the list. Nuff sed.
There are two reasons to oppose something like Medhelp. And every
medical librarian should understand both of them. You do not have to
agree but you should understand:
First -- there are plenty of people out there who think that distributing
medical information is work appropriately done by "a merry band of
volunteers." These folks tend to think of librarians as "helpers". One
librarian complained to me that the provost of the medical school
referred to the library staff as "sweet girls." If medical librarians do not
believe that this is serious business with serious consequence for public
health that should be conducted by professionals with demonstrated
credentials -- what are we saying about ourselves and the importance of
our profession? Can you imagine what lawyers would say about a "a
merry band of volunteers" helping people with their legal affairs. Like it
or not, this is the substance of your profession. If we want to attract
the best people to the profession, we should encourage high salary to
attract them. We do not do this when we promote volunteers to do our
work. I would certainly NOT support asking the National Library of
Medicine to fund a volunteer program to do work that should be led by
professional librarians.
Second -- this is being done by volunteers because there is a need, and
we professional librarians have failed to satisfy that need. Public
reference is part of the virtual medical library. If we agreed that this was
important work for medical librarians to undertake, our turf -- to be
blunt -- and if we had the leadership in the MLA to do it, we could do it
easily and effectively. And we could insure quality and permanence that
a volunteer group could not. If we think that volunteers are our peers,
indistinguishable from MLS, certified medical librarians for providing
health care information, we should drop the pretense of professionalism
because that is what we stand for.
*********************************************************
Millard Johnson PORTALS zen...@lib.pdx.edu
I would rather risk failure than achieve it without risk.
*********************************************************
Paul M. Blobaum
I couldn't DISAGREE with you more, and I find your comments silly.
Medical librarians have NOT if they don't somehow have contact with each
and every person in America or the world. What a dream world!! Medical
Librarians are employed by institutions and have a mission to fulfill
within those institutions. For most of us, that does not include
planning and collecting for each and every possible information need by
the public. Continued comparisons of medical librarians to Lawyers,
Doctors, etc are tiring... are you suggesting librarians become
licensed by the state to practice our profession? C'mon!!
I applaud efforts by any group such as Med Help who are out there trying
to make a difference. There is plenty of room for collaborative efforts
between professional and volunteer groups to help people find
understandable medical information, and if it were in the scope of the
mission of the libraries and institutions we work for, a group such as
Med Help would have happened a long time ago. Perhaps you can argue
that public libraries have fallen down in their mission to serve the
public, but I don't buy that either.
Fish or cut bait, I say.
Civis Romanus Sum, Odi Profanum Vulgus.
Paul Blobaum pblo...@interaccess.com
Medical Librarian, Olympia Fields Osteopathic Hospital
Olympia Fields, IL (Midwestern University)
sy...@mhli.netusa.net
Millard;
I found your response quite interesting... my daughter at age 2 was
originally diagnosed with a Glioblastome Multiforme Grade 4 in the
Posterior Fossa. You can look it up if you'd like.
I happed to be at a VERY Large University Hostpital here in NY where her
crainiotomy took place... I walked into the Medical Library inside the
Hospital and was promptly told..."Sorry...staff only"... hmmm...
Well .. that was 6 years ago... ummm... where can one get patient
information for ependymoma? or Glioblastoma? How about in New Paltz,
New York.. where can one go there?
Oh...btw... not to belabor the point but:
(1) Almost all of the information posted originates from the public
domain..NCI, NIH..etc.
(2) We do NOT provide diagnostic information but primarily
descriptions of diseases and conditions.
(3) We have signed an MOA with the NCI to re-distribute their material
(4) If a pt. asks a specific question...like... "What is the normal
range for a white count"...we will ask a qualified hematologist (MERRY
VOLUNTEER DOC????) and answer them. My daughter's
hematologist/oncologist has said..."Sure Phil... I'd be glad to answer
any questions that crop up"... well guys, so have scores of other people
in the Medical profession... HENCE.... MERRY VOLUNTEER DOCS!
(5) For those of you have indicated your support...thank you... for
those of you who care... Jenny is doing fine after three TOTALLY
different Pathologies...surgury...chemo and cranio-RT. It seems that
several of us have been on the receiving end of the Health Care System
and we had some thoughts of "giving back".. helping others in their time
of need....
For those who support us..thank you... for those who are adamently
against us... look before you leap...
Regards,
Phil Garfinkel
Med Help
ph...@mhli.netusa.net
--
<< Med Help International >>
<<e-mail: st...@mhli.netusa.net >>
<<telnet/ftp: med...@netusa.net >>
ci...@mhli.netusa.net
RESPONSE TO LETTER POSTED BY:
Z >*********************************************************
Z >Millard Johnson PORTALS zen...@lib.pdx.edu
Z >I would rather risk failure than achieve it without risk.
Z >*********************************************************
Dear Millard,
In your letter, you state:
Z >There are two reasons to oppose something like Medhelp. And every
Z >medical librarian should understand both of them. You do not have to
Z >agree but you should understand:
Z >First -- there are plenty of people out there who think that
distributing Z >medical information is work appropriately done by "a merry
band of Z >volunteers." These folks tend to think of librarians as
"helpers".
Med Help does NOT think of Medical Librarians as "helpers"! Med Help is
well aware of the skill and education required to be a Medical Librarian!
We want to work WITH Medical Librarians NOT take over your domain!!!
For instance: Were we to receive a request for information from a
patient, we would like to post it in Medlib. For all Medical Librarians
who respond, we will GLADLY list your names and affiliations as the source
for the information you send back. In our opinion, this becomes a
win-win-win proposition. You personally and your employers are gaining
recognition, Med Help is one step closer to its goal and patients are
getting the most complete and accurate information available! Imagine if
people in your local area became aware via Med Help of just how helpful
your library can be...and they began dropping in for your assistance??
Z> One librarian complained to me that the provost of the medical school
Z>referred to the library staff as "sweet girls."
Then obviously this provost is uninformed with regard to just how helpful
and informed Medical Librarians are. Someone asked me "how do you know
you've found every possible source of information when responding to
questions?" My answer is...we don't. Therefore it would be wonderful to
confer with ALL available professionals when answering questions...not
just physicians or pharmacists or medical writers or medical librarians.
Z> Can you imagine what lawyers would say about a "a merry band of
volunteers" helping people with their legal affairs.
Personally, I'd love to see a group of lawyers volunteer to help
people with legal matters, especially if they offer their expertise in
terminology I can understand.
Z> Like it or not, this is the substance of your profession. If we want
to attract the best people to the profession, we should encourage high
salary to attract them. We do not do this when we promote volunteers to
do our work.
Med Help does NOT want to take the place of Medical Librarians!! We want
to work WITH you....asking for your help and in turn offering you greater
recognition....and accessibility. Please bear in mind that the medical
information we offer is in lay terminology ONLY. It is my understanding
that Medical Librarians are not allowed to translate technical papers into
lay terms. Perhaps I am misguided?
Z > I would certainly NOT support asking the National Library of
Z > Medicine to fund a volunteer program to do work that should be led by
Z > professional librarians.
Z >
Z >Second -- this is being done by volunteers because there is a need, and
Z >we professional librarians have failed to satisfy that need. Public
Z >reference is part of the virtual medical library. If we agreed that t
Z >important work for medical librarians to undertake, our turf -- to be
Z >blunt -- and if we had the leadership in the MLA to do it, we could do
Z >easily and effectively. And we could insure quality and permanence
that a volunteer group could not. If we think that volunteers are our
peer indistinguishable from MLS, certified medical librarians for
providing health care information, we should drop the pretense of
professionalism because that is what we stand for.
Again, perhaps I'm misguided, but do Medical Librarians offer answers (in
lay terminology) to specific medical questions, posed by patients? If you
do, then PLEASE get the word out to the general population!!! If you do
not, then why don't we work together for the benefit of everyone?
Cindy Thompson
Med Help International Inc.
e-mail: ci...@mhli.netusa.net
---
þ WinQwk 2.0b#1397 þ grep..grep..grep... (Frog w/UNIX stuck in throat)
Webster Library
Instead of licensing librarians (just another "upping the ante" for what
we need to do to prove what???) we all need to concentrate on the need
to open m ore consumer health information for the public. Maybe each
hospital needs to have a mandate from a higher up authority to have
one. Most of the "documenting of patient education inforamtion" that I
have seen, to justify JCAHO, is but yet another peicen of
"documentation" paper with lots of signatures required, and attached to
the patient medical record... and the time wasted by busy nurses and
librarian who serve on such pateint education comittees. Many hospital
administrators "don't see the need" and don't provide support. When
one finds the means to set up an information resource, there is usualy n
o room allocated, or it becomes a narrow and controlled facility,
someones' "power base". Most hospital libraries do not have neither the
space nor the room to expand to serve the public. More power to those
who do so. Public libraries are _afraid_ of the topics and the "advised"
they might be giving. Thiws is a messy, push-me-pull-you situation. SO
PLEASE let's leave ourselves alone, not more credentials, certifications,
governement regulation except if it will get us all to cooperate and
provide the public with good, relevant sources of information,
Dalia Kleinmuntz
Webster Library, Evanston Hospital
web...@nslsilus.org (708) 570-2665
(708) 570-2926 FAX
On Sat, 29 Apr 1995 sy...@MHLI.NETUSA.NET wrote:
> Millard;
>
> I found your response quite interesting... my daughter at age 2 wase... I walk
ed into the Medical Library inside the
> Hospital and was promptly told..."Sorry...staff only"... hmmm...
> New York.. where can one go there?
>
> Oh...btw... not to belabor the point but:
>
>
> (1) Almost all of the information posted originates from the public
> domain..NCI, NIH..etc.
>
> (4) If a pt. asks a specific question...like... "What is the normal
> range for a white count"...we will ask a qualified hematologist (MERRY
>
> For those who support us..thank you... for those who are adamently
> against us... look before you leap...
>
> Regards,
> Phil Garfinkel
> Med Help
> ph...@mhli.netusa.net
> << Med Help International >>
>
Paul M. Blobaum
was omitted from my original post. It is to complete the thought "Medical
Librarians have not failed if they are not serving each and every
information need of John Q and Betty Sue Public.
It would be nice, in an ideal world, if we could all have budgets and
resources to have nice consumer health collections, and a Rolodex with
names and addresses of experts on medical condidtions available for our
consulation on our desks, so that we could provide appropriate
information for every consumer need. Well, there is only one Ann Landers
and one Dear Abby, and I can't even buy books for my library which my own
medical students need because there is no budget. Is that MY fault or
the fault of my profession? I hardly think so.
> Millard:
>
> I couldn't DISAGREE with you more, and I find your comments silly.
> Medical librarians have NOT FAILED if they don't somehow have contact with
each
> and every person in America or the world. What a dream world!! Medical
> Librarians are employed by institutions and have a mission to fulfill
> within those institutions. For most of us, that does not include
> planning and collecting for each and every possible information need by
> the public. Continued comparisons of medical librarians to Lawyers,
> Doctors, etc are tiring... are you suggesting librarians become
> licensed by the state to practice our profession? C'mon!!
>
> I applaud efforts by any group such as Med Help who are out there trying
> to make a difference. There is plenty of room for collaborative efforts
> between professional and volunteer groups to help people find
> understandable medical information, and if it were in the scope of the
> mission of the libraries and institutions we work for, a group such as
> Med Help would have happened a long time ago. Perhaps you can argue
> that public libraries have fallen down in their mission to serve the
> public, but I don't buy that either.
>
> Fish or cut bait, I say.
>
> Civis Romanus Sum, Odi Profanum Vulgus.
> Paul Blobaum pblo...@interaccess.com
> Medical Librarian, Olympia Fields Osteopathic Hospital
> Olympia Fields, IL (Midwestern University)
>
> On Fri, 28 Apr 1995, Millard Johnson wrote:
>
> >
Margaret Siebert
I am interested in finding out more about MedHelp and what it does. I am a
medical librarian with responsibilities for our "consumer health" collection
and am interested in knowing what resources exist.
Do you have a brochure that describes MedHelp? Thank you,
Margaret Siebert, MLS
Providence Medical Center
Horton Health Sciences Library
P.O. Box 34008
Seattle WA 98124-1008
email: msie...@halcyon.com
sy...@mhli.netusa.net
To All;
I started writing "thank you" notes to all who have dropped in and sent
me some private e-mail giving support... but alas... it started getting
a bit too much so I thought I'd go public...and thank those who stopped
in and have offered their support. In any event... I think there was one
tiny thing that we all forgot...The reason that Cindy and I are doing
this is not to compete with professionals... the reason is to provide
patient support... towards that end...
(1) If you see something useful here...please feel free to take it,
screen it if you'd like, and give it away. For example the American Brain
Tumor Association has posted their Primer here...this is for public
distribution. I'd love to have every other organization such as theirs
do that...it would be an enormous resource not only to you but the
general population! People who are in crisis, who have electronic access
can get help...in real-time.
(2) If you would like to share something that is in lay terminology
...upload it or e-mail it.. some person who has unfortunately succumbed
to a malady will benefit from it...
PB>Folks: I am resending this because somehow a teeny weeny important word
PB>was omitted from my original post. It is to complete the thought "Medical
PB>Librarians have not failed if they are not serving each and every
PB>information need of John Q and Betty Sue Public.
PB>It would be nice, in an ideal world, if we could all have budgets and
PB>resources to have nice consumer health collections, and a Rolodex with
PB>names and addresses of experts on medical condidtions available for our
PB>consulation on our desks, so that we could provide appropriate
PB>information for every consumer need. Well, there is only one Ann Landers
PB>and one Dear Abby, and I can't even buy books for my library which my own
PB>medical students need because there is no budget. Is that MY fault or
PB>the fault of my profession? I hardly think so.
The above quote represents my point... this is not an IDEAL world and
you are contrained just as I by budgets, however, small efforts by many
people could provide a tremendous amount of support for those in dire
need of information.... I know this very well.. and on a very personal
level. Again... thanks to those who have dropped in and offered words of
support.
Regards,
Phil Garfinkel