Consumer Health Information Advisory Group Meeting
Nov. 21, 2003, University of Washington, Seattle, Washington
The meeting began with introductions from each participant.
Gail Kouame is the NN/LM Pacific Northwest Region Consumer Health Coordinator. Her focus is on outreach and information for those who serve the public.
Lalitha Kutty is the Consumer Health Librarian from the National Network Office of the National Library of Medicine.
Roy Sahali, Community Resources Coordinator for NN/LM Pacific Northwest Region, performs outreach work with Indian tribes and supports Gail in her work.
Linda Milgrom, Outreach Coordinator for NN/LM Pacific Northwest Region, teaches classes on how to use NLM's resources and exhibits NLM services at meetings and conferences. She also administers funded outreach projects.
Judy Balcerzak is a Public Services Librarian, Nampa Public Library. Consumer health is one part of Judy's job, and she does outreach activities with the Spanish-speaking population in her area.
Lee Starr is a librarian with the Kootenai-Shoshone Libraries. Lee works with consumers in Idaho, and also shares resources with other libraries in her area, partnering with a local hospital library to provide health information.
Nicolette Sosulski, graduate student in the University of Washington Information School, is interested in "crisis reference" the difficult moments in life when consumers depend on their librarian for information. She is also interested in information seeking behavior, and in information professionals being part of health care teams.
Cathy Burroughs, Assistant Director for the Outreach Evaluation Resource Center, wrote a manual and teaches a workshop on evaluating the impact of health information outreach services.
Jane Saxton is the librarian for Bastyr University in Kenmore, Washington -- a private, non-profit school for natural health sciences. Jane pointed out that although the use of complementary and alternative medicine (CAM) has increased, patients are not telling their health care providers about their use of CAM.
Lisa Oberg, Head, Information Services, Health Sciences Library and Information Center,
Ellen Howard is the Librarian at KK Sherwoood Library at Harborview Medical Center, and the head of the Ethnomed Project, which provides health care information via the web for providers who serve immigrant and refugee groups.
Michele Spatz is the Director of the Planetree Library in The Dalles, Oregon. Her library is funded by the Mid-Columbia Medical Center but functions as a public library since they are open to the community. She also networks with public and school libraries and there is one library card good at all three systems.
Maryanne Blake serves as the Education and Communication Coordinator for the NN/LM Pacific Northwest Region. She manages the listservs sponsored by NN/LM PNR: HLIB-NW for discussion, advice and information for health librarians; and PNRNews, which is announcements and other important information from NN/LM PNR.
Sherrilynne Fuller is the Director of the University of Washington Health Sciences Library and Information Center. Sherri has a science background and is interested in consumer health.
Judith Bendersky, Project Coordinator, Governor's Council on Disabilities & Special Education, Anchorage, Alaska, does research and supports consumers in her current role as a public health educator.
Susan Barnes is the Resource Sharing Coordinator for the NN/LM Pacific Northwest Region. Her user population is other librarians in academic, hospital, and public libraries. She provides training and consultation in resource sharing to this population.
Cezanne Garcia, Manager, Patient and Family Education at the University of Washington, works with medical providers to assist them with providing information to patients. She is also working to involve patients and their families on UW committees and advisory boards.
Margo Harris, Health Educator, works at the Center for Children with Special Needs at Children's Hospital and Regional Medical Center in Seattle. She is interested in information therapy and providing health information to consumers when they need it.
Charles Taylor, social anthropologist and computer consultant, serves on the Board of Trustees for the Pend Orielle County Library District in Washington. He has been working with libraries for the last few years and is interested in dynamic definitions of information and the fact that it changes daily, and in the role of information in facilitation of communication in our culture.
Cynthia Gustafson is Chair of the Nursing Department at Carroll College in Helena, Montana and also Director of the Parish Nurse Center. She heads a network of 100 parish nurses and health ministers.
Patty Owen, Coordinator, Alaska Health Education Library Project in Juneau, is a health educator interested in linking consumers with resources and in health information communication and social marketing.
Susie McIntyre, who used to work in HIV/AIDS education for Public Health -- Seattle & King County, is now with a non-profit organization in Great Falls, Montana, Voices of Hope. She still uses her librarian skills to provide information to people and she is also working on Montana's 211 Project.
Neil Rambo, Associate Director, NN/LM Pacific Northwest Region, reported that Consumer Health has been part of NN/LM's mission for the last three years. He carries out that mission by working with agents who then work with the consumer populations.
Karen Fisher, Faculty at the University of Washington Information School, is doing research on the flow of consumer health information among people of different age groups: where do they go for health information? Who do they talk to about health? Karen is also interested in libraries' participation in 211, to make the system the best it can be.
Faith Hagenhofer, Librarian at Timberland Regional Library, serves both urban and rural populations.
Linda Milgrom outlined the RML funding program. Community partnerships and collaborations are essential to reaching the expanded audience for RML outreach activities, but many traditional network members are hesitant to embark on large projects. To encourage participation in outreach, the RML has devised a "continuum" of funding opportunities: $500 mini-awards for training or exhibiting; $2,000 express awards for planning partnerships or reassessing completed projects; and $25,000 outreach project awards. Application and review process for the smaller awards is simple, a web-based template. There are no deadlines, the mini and express awards are available until funds are exhausted. RML staff hope that success with these efforts will encourage more applications for the annual outreach project awards. The program has been in place less than one year, but already we have funded two planning awards, four training awards, and eight exhibit awards. We received more applications for the Outreach Project Awards than ever before. Although only four of the eight applications can be funded at this time, RML staff will work with all applicants to see how their ideas can be encouraged.
Linda also invited the committee to share with their colleagues information about grants available from the National Library of Medicine. The RML's funding page (http://nnlm.gov/pnr/funding) links to complete descriptions. Several RML staff have been on the review committees for these awards and offered to review drafts, write letters of support, and discuss ideas with potential applicants.
After Linda's discussion of funding opportunities, some threads of discussion followed
Michele Spatz and Ellen Howard commented that the RML seems to be gearing outreach funding opportunities to non-hospital settings, like public libraries. In Oregon, the health librarians want to do outreach and to be involved with public libraries in reaching the public. Linda Milgrom said that the RML tries to encourage hospital librarians to do outreach, but it's a hard sell sometimes. We want to encourage partnerships by hospital libraries with public libraries, but often there is no hospital library in a community. So, are also trying to provide funds and tools and to encourage public libraries to become more involved in health information services/outreach.
How can libraries become involved and ensure the success of 2-1-1? (From: Glossary of Selected Terms: 2-1-1 is an easy to remember telephone number that connects people with important community services and volunteer opportunities. While services that are offered through 2-1-1 vary from community to community, 2-1-1 provides callers with information about and referrals to human services for every day needs and in times of crisis. Information and referral services (I&R) are the link between people seeking health and human services assistance and the appropriate providers of such services. I&R services across the United States answer more than 50 million calls annually.)
The United Way (national level office) and the Alliance of Information & Referral Systems (AIRS) are driving efforts to implement 2-1-1, and advocating that it adopt AIRS standards. It's not a required service, but there is a bill going through Congress to push and fund its implementation under the Home Security Office.
Many stated that libraries have long provided Information and Referral (I&R), yet librarians are not at the 2-1-1 table for planning and implementation. For example, Virtual Reference Service is a big trend for I&R in public libraries. Some meeting members feel that 2-1-1 is "duplicative" of the I&R offered by their libraries. Points were made about the need for several access points to this kind of information (e.g. a website, phone service via the library, and phone service via 2-1-1) --not just through a library I&R.
Some meeting members stated that NLM's Go Local database initiatives could/should inter-relate with the 2-1-1 initiative. The AIRS standards require that the referral information is maintained as comprehensive and current. In Go Local, local referral information is being "volunteered" to Go Local databases by organizations wishing to be listed in a Go Local site. If NLM and its Go Local initiatives contribute or partner with 2-1-1 in developing taxonomy and maintaining content of local referral sources, there might be less duplication of effort. However, maintaining the database that supports these services is very costly
Others ideas and suggestions for how libraries might be involved with 2-1-1 were offered:
- Offer reference skills training to 2-1-1 call operators -- find out how people express their information needs over the telephone.
- The operators might be volunteers, so funding for training them would need to be established. Karen F. reiterated the need to educate the government about taking information systems like this seriously, and funding it appropriately.
- Offer skills in cataloging, thesaurus construction, evaluation of information for the 2-1-1 database.
- Librarians could get on 2-1-1 advisory boards -- be a contributor to 2-1-1, not a manager of it.
- Example, Maxine Rockoff at the Mid-Atlantic RML was involved the NYC I&R system, which might be part of the 2-1-1 for NYC.
- ALA and other professional library organizations should be more aware of 2-1-1 and seek a role in the planning process.
- Neil will poll the RMLs about any involvement they have or know about in their regions re: 2-1-1.
- NLM could bring more awareness about 2-1-1 to PLA via its contacts with Public Library Association thru the "Public Libraries Outreach Initiative" Opportunities: there is a PLA meeting in Seattle in February, and NLM is contributing (Becky Lyon, for one).
Susie McIntyre said that the FCC has "saved" the 2-1-1 phone line. Historically, grass root groups have provided crisis lines. They need to be included and at the table, too, when 2-1-1 planning is done.
Ellen Howard discussed the planning grant she facilitated, Community Outreach Partnerships Planning Project
NLM has funded the department of Public Health -- Seattle & King County to coordinate a project to improve linkages and information sharing between the King County Somali communities and public health agencies.
Comments followed, such as: "There is a battle between health educators and physicians re: the types of health education resources needed." Doctors don't always see the need for culturally relevant materials among non-English speaking communities, or for low literacy materials for highly literate patients. Patients need materials at different levels of technical detail and literacy. Patients can phase their use of materials by self-selecting what they can take in and understand at different times.
After background about the Public Libraries Initiative, several ideas were offered to help this RML work with public libraries to promote NLM resources and increase skills in providing health information. Some ideas were:
- Health librarians could attend round tables about health information at public library conferences.
- Health librarians or the RML could share a booth with public libraries at community events, such as a county fair.
- If public librarians have difficulty in finding time to attend training sessions, especially offsite, more options are needed for distance education E.g. Washington State Library offers an indexing class online that includes weekly hour-long chats.
- Faith says that in her library, the reference staff do not have C.E. requirements (so little incentive to attend trainings) and do not have staff meetings. However, there are in-service skills workshops for professional or non-professional staff one day per year…which would be a good opportunity for a class on health information reference service. Also, adult programming in public libraries is often not initiated by the library, but by community groups who use the meeting room in the library.
- In-person training for public library staff is not always necessary, but it is nice because issues come up, networking takes place, and there is a level of trust that can be developed and a mentor relationship.
- The "train the trainer" model was encouraged because it's efficient (only one staff from public library needs to attend a workshop) and b/cause of its peer-trust advantage (public librarians will hear and listen to their peers more easily?).
- Get a workshop or credit course about health reference training in library school curriculums. Right now, there is a HSLIS listserv for library students. In addition, directed fieldwork might catch the attention of public library school students. They need a leadership and teaching experience, and could be funded to do a health information internship in a rural public library.
- Create a tutorial about health information service for a CD.
- Add a virtual reference component to MedlinePlus.
- Try to hook onto a hospital-sponsored class, such as diabetes education, etc.
- NN/LM PNR can help to broker deals for public libraries which do not have much money available for subscriptions.
Other comments included:
- The web is opening up multi-media as a method of information delivery.
- Need to consider how people process and/or ask for health information under the stress of a new health condition or a crisis.
- Need to steer people toward reputable virtual community groups.
- People bond together around a common interest -- tag onto specialized interest groups.
- We tend to steer people toward documents, need to focus on resources other than documents such as support organizations.
- In rural communities, many people turn to someone other than a doctor for medical care -- need to find out who else is involved.
- There is no national/universal standard at present for "quality health information" Also, there is no lead agency in the library environment that could take on the role of capitalizing on a "Google-like" approach to pointing people toward health information. It is known that many members of the general public use Google instead of starting at a place like MedlinePlus -- how can the library community come up with something like GoogleMD? Somehow re-design algorithms in search engines for health information.
- The speed at which change is taking place is rapid -- librarians need to be involved in the process.
- We need to encourage more partnerships between hospital libraries and public libraries, although some of our states do not have a large number of hospital libraries. NN/LM offers funding to encourage networking between hospital and public libraries.
- Library school students could be utilized and offered training and directed fieldwork opportunities like the WWAMI model.
Ideas for promoting MedlinePLUS links on library websites:
- Send out traveling NLM exhibits for use by public librarians. Tailor the example health topics to fit the community need and remember each is unique.
- Develop web-based learning modules.
- Post results of searches on popular topics on the Web.
- Have a speaker's bureau.
- Promote the Spanish MedlinePLUS at exhibits with a Spanish-speaking librarian, and provide a Spanish language desktop.
- Promote easy-to-read and interactive tutorials more.
- Contact the public librarians in the states to see what they want or need to assist or promote health information service.
- Speak to EBSCO to encourage them to provide health information full text in their products.
- Launch a competition among public libraries for the "best health site". Criteria should include that the site is appropriate or relevant to the community's needs. Get consumer feedback about the "best site."
- Offer a menu of promotional options: speaker series, promotion posters, handouts, etc.
- Get to know the Public Libraries' missions and think how to slant the health message.
- Offer an incentive to get public library staff to attend trainings -- e.g. offer to help them broker journal subscription consortiums.
- Other incentives--$$ toward core collections.
- "Ask a Librarian" -- have medical librarians participate in monthly meetings of support groups at the public libraries.
- Partner with hospital prenatal classes -- new parents are a group to be reached.
- Reframe promotion names for classes or resources to be more compelling: e.g. "Websites with health information you can trust."
- Be sure to include the hospital librarians in the collaboration initiative.
- Become more aware of social marketing principles -- Nancy Lee on Mercer Island offers a Washington Dept of Health workshop about social. marketing, which could applied to promotion of MEDLINEplus -- knowing your audience, enlisting them in helping to shape the message, making it more appealing to the public, using the media for advertising.