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Here is a summary (long) of what I have received on starting a Cancer
Learning Center (Patient Education Library).  I thank all of you respond
to my query, there are some great suggestions!

Lisa

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Some of the things we did that I think worked well included:

- Have 2 PCs with Internet access (homepage is the library page, with
pathfinders to authoritative cancer info sites (and nutrition and other
related topics)
- Made the checkout process VERY simple (a simple sign-out form that can
be, and often is, self-serve).
- Included LOTS of NCI and ACS pamphlets free for the taking.
- Philanthropy raised money from a single donor (single or multiple
prob. wouldn't matter) to pay for materials in the library - I now have
a pretty substantial fund to draw from...I just have to put a donor card
or sticker on everything that I buy using that money. A very fair
tradeoff, I think, for not having to scramble for money in the budget.
- Made sure we had very clear policies on donations of books/videos - we
send thank yous to everyone who donates, but not everything is included
in the collection. We've had a lot of well-meaning people who drop off
the books their wife, mother, father, etc. found useful when she/he had
cancer...15 years ago!
- Keep the books and videos coming! There's a lot more out there now to
choose from than even two years ago, and the selection keeps growing.
This is a wonderful thing...2 years ago, for instance, I was able to
find two books dealing with ovarian cancer - and one was Gilda Radner's,
who died of the disease. Not so encouraging. Now I have an ovarian
cancer collection consisting of around 6 books and a video - still not
overwhelming numbers, but it allows us to offer people more selection,
and more updated info.
- Warm, welcoming furniture and displays, and big windows. The room the
library is in is a decent size - probably about 30x20 - and has great
big windows with high-end blinds that disappear into the ceiling - very
nice. Everyone who comes in for the first time comments on what a pretty
room it is, and how welcoming. There are a couch and two chairs, all of
which are high-end waiting room style - durable, but pretty and very
comfortable. We also have a small library/conference style table and
chairs.

Things that haven't been wildly successful, but probably still good to
have/do:

- We have two donated laptops that are equipped with games (Solitaire,
etc.). They also have wireless cards, so they work with the wireless
network we installed in the Cancer Center when it was built, and users
(who can only check-out the laptops for use within the building) can
surf the Internet. These have been used sporadically - mostly by the
medical oncology patients, since the rad onc patients aren't here long
enough. We've advertised them in the medical oncology department, but it
seems that most people who might want to use a laptop bring their own,
so they have all their own files. They've become kind of a last resort
for nurses trying to find things to occupy restless patients.
- TV/VCR combo with headphones. The idea here was to allow people to sit
in the library and watch videos from the collection. Not a bad idea, but
even with a privacy divider, most people want to watch the videos at
home, where they can digest them AND have more privacy. It's been used
probably three times in two years.

Things I wish we'd done differently:

- Positioned the entrance to the library better. Due to some
architectural dilemma or other, the door couldn't be located right by
the entrance to the cancer center as originally planned (or so I'm
told). Instead, the library is accessed from within the radiation
oncology waiting room, which right off the bat makes it more difficult
to reach (even if only psychologically) for the medical oncology
patients. So more than half of our user population has an immediate
access problem. Not good! Plus, they just don't see it ona regular
basis, so it doesn't stick in their minds that the library is there as a
resource for them. I would LOVE big welcoming double doors in a
prominent place.
- Volunteer staff. The decision was made before I even started working
here (a few months before the cancer center opened) that no extra staff
would be hired for the cancer library - that volunteers would be used
instead..eek. We ended up with some absolutely wonderful volunteers in
the beginning, mostly cancer survivors, but even then, with 10 different
people coming in for four hours a week each, it was disjointed, to say
the least. Then the inevitable happened - sadly, we had some
recurrences; not so sadly, some volunteers who had been out of work
since diagnosis or treatment found jobs again, etc. In short, we lost
the whole first group. Recruitment of new volunteers, now that we're out
of the first flush of excitement of the new center, has been difficult.
I currently have one volunteer who comes in one afternoon a week, and
she's wonderful (a former librarian), but with that kind of partial
staffing (and me running back and forth between there and the medical
library), I just can't provide the level of service I'd like to. I'm
currently exploring (tentatively) the possibility of hiring a PTE -
something like 15 hours a week (three days at 5 hours each). Then we
could at least post staffed hours, and make the library more
user-friendly for patients and staff alike.
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A little over two years ago we opened a Cancer Resource Library in a new
cancer center building on our hospital campus. The cancer center houses
radiation oncology, a chemo suite, 2 private hem/onc practices (appx. 24
doctors), health psychologist, cancer nutritionist, cancer geneticist,
full care management team of nurses & social workers. 

I was involved with the planning of the library from the ground up,
working with the architects on design and layout, furniture, etc. I have
been responsible for collection development. We have books, journals,
magazines & newsletters, computer programs, videos, audio tapes & CDs.
Almost everything circulates. We have computers for people to use, a
monitor with headphones if they want to view a video, and offer free
photocopies. 
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Roswell Park Cancer Institute has a Community Cancer Resource Center for
patients. 
The web page is http://www.roswellpark.org/document_130.html
 It says:
To read the feature article about the CCRC from our award-winning
consumer health magazine, Roswellness, please click here: Roswellness 
< http://www.roswellpark.org/files/1_2_1/ccrc/ResourceCenterFall01.pdf >
Please contact 1-800-ASK-RPCI if you need more information on it.
 The CCRC is not part of the Mirand Library, web page:
http://www.roswellpark.org/document_120.html
"The Dr. Edwin A. Mirand Library is organized to serve the information
needs of the clinical, research, and student population of Roswell Park
Cancer Institute Corporation."
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Check out the jan 2005 issue of cancer nursing vol 28 #@ 1 for the
article "information requirements of people with cancer" It may give you
some help.  
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We did this a couple of years ago.  We have a Comprehensive Cancer
Center on the hospital campus where we put the patient library.  It
consists of videos, most of which came from Milner-Fenwick, books, and
lots and lots of pamphlets.  The American Cancer Society will provide
all kinds of pamphlets.  I ordered the books from Majors.  You can
search their online catalog for consumer health books on cancer.  In
each chemo room there is a TV/VCR where the patient and family can watch
videos during their treatment. There are videos on oncology topics as
well as relaxation videos.
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We have a Cancer Resource Library that has been operating for about 6
years which is manned by hospital volunteers.  Here is what we have and
what I think would make it better.
 
Location:  The location is adjacent to our outpatient breast center and
cancer center.   Unfortunately, it is out of the line of traffic and is,
therefore, underutilized.  We are moving to a new building which has
placed the space just off of the cancer center waiting room.  This will
increase availability to the patients utilizing the cancer center, but
will be further away and not as accessible to patients who only go to
breast center or radiation oncology.    So in your dream, I think you
need an area that is easily accessible to all cancer patients in
hospital and those who are going to other cancer program departments.
 
Materials:  We started with a book list from the National Coalition for
Cancer Survivorship.  Then two clinical nurse specialists reviewed books
lists via Borders.  Today, we continue to review books from searches on
the internet (Amazon.com, etc.)  We assess potential books for credible,
up to date information.  (There are some books out there that are WAY
OUT THERE!!)  We also try to get books that are supportive in nature to
patients, families and friends as well, as diagnosis specific books.
The American Cancer Society has a good collection.  A committee
including oncology CNS and librarian review collection annually for new
needs and to remove outdated material from the collection.  Also, an
up-to-date section of medical reference books is needed.  The goal would
be to have materials that would appeal to the lay, high school or less
educated public as well as to the more educated public.  One also has to
keep in mind those individuals who are medically naive at the time of
diagnosis, but educate themselves to a very sophisticated level.
 
Informational Brochures and pamphlets:  We try to keep a full collection
of brochures and pamphlets from organizations such as the NCI, Cancer
Society, Leukemia/lymphoma society and etc. to give to patients.  We
also do keep educational materials distributed by many of the
pharmaceutical materials as long as they are pretty generic and not too
promotional.  It is a challenge to keep these materials up to date and
stocked.
 
Internet:  We have 2 computers for internet access.  The favorite lists
are set to credible internet sites. Carol Bondurant has presented
educational sessions to the support groups and to lay public on
evaluating information from the internet.   In my dreams, I would like
to see these types of sessions held monthly, in the library.  We are
looking forward to upgrades on our computers which are now considered to
be "dinosaurs".  
 
Other media:  Dream: Interactive computer based programs designed for
patient education.  Also need equipment for display of DVD, VHS, and CD
based materials.  It would be nice to have an ongoing  posting of
educational programs that appear on the internet or that are held via
telephone conferencing.    
 
So, from my point of view, my biggest dream would be to have an
individual who's responsibilities focused on the materials and services
that a cancer information library could provide to the public.  The
volunteers are great for the day to day activities, but a person
dedicated to library operation (not realistic, I know) would improve the
service.
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We just opened a patient resource room in our oncology center with an
exact duplicate located at our radiation therapy site.  We put in a
computer with shortcuts to various websites on its desktop and
tv/vcr/dvd combo unit.  There is a desk and a couple of easy chairs for
our patients and family members to use when in there.  Patients are
allowed to check anything out they wish. All of our vendors were more
than happy to provide pamphlets galore so we have scads of them
available for the taking. We also put in a table top meditation garden.
That's the best I can do to give it a name.  It is a Japanese sand box
with a little rake?  You can sit there and make all kinds of patterns in
the sand.  It is very relaxing. 
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Try the touchscreen educational materials from CancerHelp:
http://www.cancerhelp.org/
 They will often provide a special computer and the programs free to
smaller libraries, or on a trial basis.  Our cancer center has this in
the waiting room, and the social worker there directs patients to it.  I
believe it is updated several times a year via CD, but I don't have
other details except that it is easy to use and the patients do use it.

Lisa Marks, MLS
Supervisor, Library Services
Health Science Library 
Providence Saint Joseph Medical Center
Burbank, CA 
(818) 847-3822
(818) 847-3823 (fax)



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