 |
 |
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 ************************************************************************ ******************************* 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. ************************************************************************ *************************** 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. ************************************************************************ ******************************* 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." ************************************************************************ ******************************* 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. ************************************************************************ ******************************* 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. ************************************************************************ ******************************* 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. ************************************************************************ ******************************* 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. ************************************************************************ ******************************* 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) DISCLAIMER: This message is intended for the sole use of the addressee, and may contain information that is privileged, confidential and exempt from disclosure under applicable law. If you are not the addressee you are hereby notified that you may not use, copy, disclose, or distribute to anyone the message or any information contained in the message. If you have received this message in error, please immediately advise the sender by reply email and delete this message.