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Summary of Advisory Meeting

February 28, 2001

South Campus Center, University of Washington
February 28, 2001

Advisors:

Judith Bendersky, SE Regional Resource Center/Alaska Regional Assistance Center
Cezanne Garcia, Project Manager, Patient and Family Education, UW
Juli Gregory, Director of Education, Good Shepherd Medical Center, Oregon
Anne Haley, Director, Yakima Valley Regional Library, Washington
Margo Harris, Harris Training & Consulting Services, Seattle
Warren King, Seattle Times Medical Reporter
Mary Ellen Lemon, Librarian, Healthwise, Idaho
Thomas R. McCormick, Senior Lecturer, Medical History and Ethics, School of Medicine
Susie McIntyre , HIV/AIDS Program, Public Health Seattle & King County
Patty Owen, Coordinator, AHELP (Alaska Health Education Library Project)
Karen E. Pettigrew, Assistant Professor, The Information School, University of Washington
Mario Javier Pineda, MD/PhD Student, University of Washington School of Medicine
Jane Saxton, Head Librarian, Bastyr University, Washington
Michele Spatz, Chair, CAPHIS and Director, Planetree Health Resource Center, Oregon
Ilene Wing, Planner, Ft. Belknap Indian Community Health Department, Montana

Staff:

Cecilia Durkin, Consumer Health Librarian, National Library of Medicine
Sherrilynne Fuller, Director, NN/LM PNR and Director, UW Health Sciences Libraries
Neil Rambo, Associate Director, NN/LM PNR
Nancy Ottman Press, Consumer Health Network Librarian, NN/LM PNR
Susan Barnes, Network Librarian, NN/LM PNR
Maryanne Blake, Network Librarian, NN/LM PNR
Michael Boer, Systems Coordinator, NN/LM PNR
Cathy Burroughs, Network Librarian, Evaluation, NN/LM PNR
Patricia Devine, Program Coordinator, NN/LM PNR
Roy Sahali, Tribal Connections Project Manager, NN/LM PNR

Visitors:

Sarah Ellison, student, UW Information School
Kent Unruh, student, UW Information School

The meeting started with a dinner in the evening of February 27 at the home of Nancy Press--a time for participants to get to know each other.

On February 28, Sherrilynne Fuller welcomed participants. She put into perspective the concern of health librarians for consumer health information and the difference now made by NLM's new initiatives in this area. She told a story from her early career of a family for which good health information made a huge difference.

Introductions

Nancy Press reminded the group that each participant has a dual role--representing not only a profession, but also the consumer in each of us. She asked that participants introduce themselves and explain their work as if talking to consumers, who do not necessarily know the niche each profession occupies.

Nancy Press introduced herself as a consumer health network librarian, who tries to make sure that people, no matter who they are or where they are in the Pacific Northwest, have good health information. One of the ways she does this is to teach classes on finding good information to anyone who provides health information to consumers-public health workers, public librarians, tribal health workers, teachers, migrant clinic workers, systems administrators, and any health professionals. She has a masters degree in librarianship.

Mary Ellen Lemon introduced herself as a research librarian. She does evidence-based medical research, looking for guidelines, practice parameters, etc. She provides this information to writers at Healthwise who then translate the information into language appropriate for patients and consumers. Healthwise publishes patient and consumer health information. She has a masters degree in library science.

Maryanne Blake introduced herself as the RML outreach coordinator. She works with health professionals to make sure they have good access to information. She told a story about a woman who was looking for good information for her husband so that he could make serious decisions about his cancer care. She said that she is pleased that the RML can now focus on consumer health information. She has a masters degree in library science.

Margo Harris said that she has been a health educator for 29 years and now has her own small health education consulting business. She was one of the first or non-librarians to use Grateful Med. She has always split her efforts between school health and patient education. Her passion is finding the right health information to get to the people who need it. She has a masters degree in public health and a Washington state teachers certificate with an instructional technology endorsement. She is fascinated by the Seattle Public Library's Quick Information Service where 60-70% of all the questions are related to health.

Anne Haley said that her job is to connect people with ideas, believing in free access to health information. She is the library director of a county-wide library system with 19 facilities in Yakima County. As director, her job is to encourage development and partnerships and find the means to do what needs to be done. She said that is she were the head of a construction company her job would be getting bids. Yakima County has many challenges in terms of low literacy and lack of means and most people in the county do not know how to work within the current information system. Nevertheless, the public library is usually the only place to get free information. Anne said that a major problem for public libraries is obtaining copies of articles that are found through Medline.

Neil Rambo described his role as one of outreach. He tries to forge a link between NLM and the RML on one hand and communities that lack access to information on the other hand. When consumer health information was written into the RML contract he realized that this isn't a new, additional role; instead it has turned the RML program upside down so that any work we do with a community is ultimately a reach toward the consumer. He told a story of a health problem in his own family for which there was no professional consensus on proper therapy. The information available was only part of the puzzle; the information had to be combined with the consumer's cultural makeup and with the health professional's judgment in order to arrive at a joint decision.

Susie McIntyre said that she is both a librarian and a health educator. She runs an HIV/AIDS resource center for the King County - Seattle public health department. As a health educator, her work is all about behavior change. She puts much effort into simplifying the messages and focusing on behavior change. She prepares "infograms" for outreach workers that reduce public health messages down to just a few important points so that the message is not diffused, such as "five things you need to know…"

Tom McCormick is responsible for the medical ethics training in the UW School of Medicine. This is the medical school for a five state region (Washington, Wyoming, Alaska, Montana, and Idaho) and offers medical school classes in all five states. Tom goes out to the remote sites and small villages to work with health leaders. What he hears in rural areas is, "How can ethics be tailored for rural communities?" These communities do not have sophisticated medical interventions, but are often relying on health care by fax, phone, and computer. He said that he has noted a change in his own health care over the last three or four years in that now the doctor hands him some reprints on his condition. He told of the dilemma of some of his friends who get three entirely different recommendations from three different doctors and don't know how to make their decisions. Tom has a divinity degree.

Judith Bendersky works for the educational services agency of Alaska as a health educator for the school districts. She concentrates on health and safety, specifically improving the school environment, violence prevention, and substance abuse. She also teaches a class at the University of Alaska for community wellness advocates. Judith has a masters in public health and also a masters in library science. Judith works in rural Alaska where electronic resources might not be possible, where just a few books on a shelf would help. Judith said that, when she goes to the doctor, she usually brings a good review article with her or faxes it the day before her clinic visit.

Patty Owen is with the state division of public health in Alaska, especially in the area of health promotion. She has been working on a project, funded by CDC, to enhance sharing of information among public health professionals. Since Alaska has no county system of government and no local health departments, her work takes her to all parts of Alaska. Patty has partnered with the Alaska Health Sciences Library on an NN/LM funded project to teach to public health workers around the state. Patty says that, as a mother and a resident of Juneau (which has no road access), the concern is always: "should we got out of state for medical services?"

Cecilia Durkin said that her role is to provide educational information about NLM's work in consumer health education. She values her contact outside of NLM so that she can take good ideas back to NLM to be put into action.

Michele Spatz described her two professional roles in this group, one as Chair of CAPHIS, the Consumer and Patient Health Information Section of the Medical Library Association and, on the other hand, as Director of the Planetree Library in The Dalles, Oregon. She considers her Planetree library to be a community-based public library that specializes in health and medicine. She regards every interaction as a teachable moment with consumers-a chance for her to advocate for consumers and to encourage consumers to ask for the information they need. Michele is concerned that consumers get just what they need to know-culturally relevant, not too much, and at the right reading level. She also sees her job as teaching people make sense of what they read.

Michael Boer provides technical support for the RML staff-both in this region and nationally. In using technology in the area of consumer health information, he sees usability engineering as critical. He also emphasizes relating to people as individuals--even on a web site-and does not want to be thought of as just a "consumer."

Ilene Wing is the health planner for the tribal health program at Fort Belknap Indian Community. Fort Belknap contracts with IHS to work locally and with seven other reservations in Montana. She is also the lead researcher for the Fort Belknap health program, which is a challenge because people need information immediately, but are so geographically remote. She told a story of a patient who was being transferred to Seattle for a transplant, but had to drive four hours over the mountains to the nearest airport and missed the scheduled flight. Ilene asks, "In life or death situations, how can we better serve patients?" Ilene also assesses health needs of the community, and collaborates with other agencies in fulfilling those needs.

Juli Gregory is an RN and is responsible for education for hospital staff and also community health education in Hermiston, Oregon, a rural community that has high percentages of the elderly and of minorities. She set up an information center that is open to the public and has also set up programs for the community. She worries about addressing the different needs of the variety of people in the community and she worries about the accuracy of the information she can provide. A major objective for her is helping people follow up on their own. Physicians in her community are threatened by newly-educated patients. The three aspects of health information she wants to address are: access, reliability, and differentiation for different populations.

Susan Barnes is the resource sharing coordinator for the RML and sees that consumer health information is a major new challenge in the area of resource sharing-the sharing of information sources among libraries. Susan has been collaborating with Nancy Press in outreach to public libraries and community college libraries to help them access good health information.

Sarah Ellison is a student in the University of Washington Information School and aspires to jobs like those of the other participants!

Kent Unruh is also a student in the Information School. He grew up in Fox, a village outside Fairbanks, Alaska. He has a background in technical engineering, but his work in setting up community computing centers in Chicago gave him the insight, as he worked with the local health promoters in the Latino community. The technology is the easiest piece of the puzzle. The difficult pieces are determining need and developing programs that address the specific groups to be served.

Karen Pettigrew is a faculty member in the Information School, which has recently been given a new, broader mandate. Karen does research and teaches in the area of information behavior. Using qualitative and ethnographic methods, she focuses on communities-the information flow in communities. One conclusion she has drawn is that people are helped by information in the ways we least suspect. Even when there is a communication breakdown, there can be a positive outcome. She told the story of a nurse recommending that a man find a chiropodist. The man thought a "chiropodist" was some kind of orthotic and made himself a comfortable orthotic for his shoe. Studies show that, if people are given wrong information with a smile, they are happy with that information. She is currently studying how the public uses the Internet for daily problem solving; what are the actions people are trying to accomplish when they search. She sees the American health care system as exceedingly complex, and described the difference between visiting a doctor her versus visiting a doctor in her native Canada.

Mario Javier Pineda is a medical student, which gives him a chance to observe patient interactions without being the immediate provider and also gives him the opportunity to do bench research that helps him see the link between research and patient care. He has personal experience with the intensity of consumers' need for information: family and friends barraged him with questions about health as soon as he started medical school. He is particularly concerned with the needs of Hispanic populations.

Roy Sahali introduced himself as the RML's Tribal Connections Project manager. He works with communities to set up Internet connectivity plans and then use their connections to find e-health information.

Cathy Burroughs is the Evaluation Librarian at the RML and has been working with a variety of social science outreach experts, especially health educators, to arrive at a theoretical basis for planning and evaluating health information outreach. Cathy's work is embodied in "Measuring the Difference," a manual available from the RML.

Jane Saxton is the librarian for Bastyr University, which has classes in naturopathic medicine, acupuncture, Oriental medicine, and a nutrition program based on whole foods. The philosophy of medicine at Bastyr is the treatment of the whole person, emphasizing wellness and non-toxic therapies. Bastyr has an international student body and also an ethnically diverse patient population at a clinic in Wallingford (a Seattle community). Bastyr has had a high profile nationally in complementary and alternative medicine (CAM). Bastyr got major NIH funding for CAM in the area of HIV. Members of the White House Commission on CAM were at Bastyr in October. Currently Bastyr is drafting a proposal for a center for traditional medicine, in collaboration with the University of Washington School of Public Health, DHHS Region X, and the Northwest Indian College (in Bellingham, Washington). This center would provide structure for outreach into communities. She sees Bastyr also as a workplace that offers wellness programs, such as belly dancing classes for staff!

Cezanne Garcia is in charge of patient education for the University of Washington and is also on the faculty in the School of Public Health. Her goal is to help patients make their best decisions about their health. Most of her work is with clinicians and staff-helping them to help their patients. She has worked on web sites in health information using the criterion that the information someone needs should not be more than "three clicks away."

At this point in the meeting an earthquake of 6.8 on the Richter scale struck Seattle. Meeting participants were urged by the many health educators and patient educators present to get under the table until the earthquake was over. As soon as the shaking stopped, Warren King left the meeting to report to duty at the Seattle Times in order to cover the news. Several other participants also left before the meeting ended. After a brief break, the meeting resumed. With reports of the airport closure and railroad track destruction, participants had serious concerns for the rest of the day other than just the meeting content. The building housing the RML office was closed, which precluded some sharing of materials.

Consumer Health Information Initiative at NLM

Cecilia Durkin reported from NLM. The text of her slides is as follows:

HEALTH INFORMATION FOR THE PUBLIC

Pacific Northwest Region
Consumer Health Information Advisors
February 28, 2001

“The Internet offers us one of the best opportunities for improving access to reliable, up-to-date, health information.”

Donald AB Lindberg, M.D.
Director, National Library of Medicine

NLM Consumer Health Timeline

June 1997 - Free MEDLINE
October 1998 - MEDLINEplus debuts
January 2000 - Consumer health projects funded
February 2000 - ClinicalTrials.gov launched
January 2001 - The Public Library and Consumer Health Conference

Consumer Health Outreach
  • Funding
  • Electronic Health Information Resources
  • Training
  • Document Delivery
NLM Consumer Health Funding
  • 53 subcontracts awarded for 2000-2001
  • $1 million funding
  • 34 states and the District of Columbia
  • Under-served populations
  • Partnerships
  • Technology, education, web site development
National Network of Libraries of Medicine
Pacific Northwest Regional Medical Library
  • Unique challenges and opportunities
  • 6 subcontracts
  • Over $200,000 funding
  • HEALTHINFOQUEST
HEALTHINFOQUEST
  • Web Tutorial
  • Pathfinders
  • Authoritative resources
  • Traditional and alternative medicine
  • Designed for public librarians
MEDLINEplus
  • Health Topics
  • Encyclopedia Image
  • Interactive Health Tutorials
  • Recent PubMed Citations
  • Drug Information Page
  • Current Health News
ClinicalTrials.gov - Features
  • Information about clinical research studies
  • 5,000 NIH clinical studies
  • Multiple sources
  • Browse by condition or sponsor
  • Excellent user’s guide
Document Delivery

“Innovative and workable approaches to providing consumer health information”

-Kent Smith
Deputy Director, NLM

The RML's Consumer Health Information Outreach to Date

Nancy Press reported from the RML. The text of her slides is as follows:

Consumer Health Information Outreach to Date

National Network of Libraries of Medicine
Pacific Northwest Region
February 28, 2001
Contract between NLM and UW
NLM says:
  • reach minorities, senior citizens, and low income populations
  • work with NLM and other organizations to improve access to electronic consumer health information at local, state, and regional levels
  • promote MEDLINEplus
Contract

We responded:

  • work on a regional level with strategic partners
  • address disparities in health information access
  • explore ways to help members of the public who are not appropriately served by traditional modes of access
Outreach Funding
  • Town meetings in Idaho (Idaho State Univ.)
  • Web site on gay health concerns (King Co. & Seattle Public Health)
  • Health librarians at support groups, the county fair… (Kootenai Medical Center)
  • Librarians team up with school nurses (Oregon Health Sciences Univ.)
  • Bilingual web site for Yakima County (Yakima Valley Memorial Hospital)
  • HealthInfoQuest
  • Internet connections and training for Wallowa County public libraries
  • Computers and training for tribal college librarians in Montana
Why Electronic Resources?

The Web is a vital source of medical information

52 million Americans have gone online to become more informed about medical problems 55 percent of all Web users have gone online to seek out health-related information more popular than online shopping, sports scores or stock quotes
Pew Internet and American Life Project
Evaluating Online Resources
  • Authority - author, editor, board of directors
  • Contact Information
  • Content Accuracy
  • Currency
  • Purpose
  • Audience
  • Readability
  • Organization
  • Site Maintenance
Is this article good for me?
  1. Health news or information is best for you if you are just like the people being talked about in reports of research studies.
  2. The news or information should say who was involved in the study--what gender, age, disease…
  3. News or information about a good therapy should compare the new therapy and other therapies.
  4. There is usually new research to help you and your health provider make better decisions. If you have information older than about 3 years, try to find some more recent information to go along with it.
  5. A good health study should have involved lots of patients, especially for a common disease.
  6. Read the whole thing.
  7. Any article which shows 100% success or 100% failure is not honest!
  8. An article about one person and his or her health problem, success, or failure can't be used as good evidence for anyone else's situation.
  9. Read opinions on different sides before making a decision.
  10. The perfect article for you and your situation might not exist. We often have to work with the best evidence available.
Training

Exhibits and talks at state library associations

  • Alaska Library Association
  • Idaho Library Association
  • Montana Library Association
  • Oregon Library Association
  • Washington Library Association

And participation on their discussion lists

Exhibits and talks for:

  • Washington school librarians
  • Oregon Council of Health Care Educators
  • Western Migrant Stream Forum (Farmworker health care)
  • American Indian Clinicians Cancer
  • Thurston County social workers
  • Public librarians in several locales

Classes on Health Information for Consumers Using the World Wide Web for health/public library collaborators

  • Spokane, WA
  • Pullman, WA
  • Eugene, OR
  • Yakima, WA

Training for Gates Foundation

Gates trainers bring hardware and software to libraries and communities. To interest people, they need content. Everyone cares about health! We provide training in health resources.
Document Delivery
  • Public libraries, community college libraries, etc., should be able to find out about health libraries in their communities
  • Lobbied national database vendor to have health libraries’ journals added
  • Put directory information about health libraries up on the web
  • E-journal access for tribal libraries in WA
  • E-journal access for Wallowa County public libraries
  • Document delivery is part of training for public libraries
Press, NO, "SERHOLD and the public's access to health information," Bulletin of the Medical Library Association, v. 88, n. 3, July 2000, p. 269.
Teen Health Information Study

Nancy quoted a recent anecdotal study which surveyed 117 14 and 15 year olds in an urban middle school. Most of the students said that they had used the Internet for health information and the sites they mentioned using were teenfit.com, discoveryhealth.com, kidshealth.com, and allear.com. Even more of the students had asked their family, health care provider, or friends or had read books and magazines. When asked how much they trusted the source of information, students trusted family, health providers, friends, books, and magazines more than they trusted the Internet.

Discussion

Before the meeting the participants all received the following list of questions to ponder:

  • What do people need in order to find, choose, assimilate, understand, and use health information (a process librarians call health information literacy)?
  • How can we assess the public's health information literacy? Is improvement needed? How can we tell once we have filled a need?
  • What does each of our professions offer to the public in any of these areas?
  • What help is still lacking? Where are consumers and the public having the greatest problems?
  • Do our target populations (minorities, senior citizens, and low income populations) have special needs?
  • How can our professions partner to help fill the need? Especially, how can health libraries work well with you?
  • What needs to be done at the national or regional level? What cannot be done or is not being done at the local level?
  • Are there simple and clear principles we can give people to guide them?

 

Jane Saxton offered additional evaluation principles to use in the area of CAM information. The main principle is that of the accumulation of total evidence. She said that case studies are also more important in CAM than in Western medicine. CAM does have scientific studies, but there are difficulties with study design. For example, how does one have a control group in the study of acupuncture. (Jane said that Bastyr researchers are working on some control mechanism that feels like needles without being needles.) The mind-body methods, prayer, and distance healing all depend on the orientation and opinion of the patient toward the treatment. She said that some of the systems of medicine in CAM, especially in traditional medicine and Ayurvedic medicine are profoundly different from Western medicine. For example, the energy system of the body, simply does not have an equivalent in Western medicine. She offers the principle of continuity of cumulated evidence. Again with naturopathy, the continuity of tradition is an excellent principle to use. For example, naturopathic medicine has recommended against margarine for many years. CAM is often based on the principle of common sense, with such recommendations as moderate diet and exercise.

Susie McIntyre reminded the group that, in some areas of interest to health consumers, all we have is anecdotal evidence, since no research has been done. For example, her clients ask, "What's the safest way to shoot up?"

Anne Haley said that literacy is a huge problem in her county's public libraries. She needs videotapes, but they are very expensive compared with text. She suggested that NLM provide funding to purchase a union collection of every video in health that could be loaned out all over the region. She said that, until we have streaming video, the wait of a few days for a loan would be well worthwhile.

Cezanne Garcia mentioned a health literacy program that her office has. She says that we must go straight to the root of the problem and help building reading skills. Accommodation is good, but we must also work on the ability to read and understand.

Mary Ellen Lemon said that Healthwise has had an 8th grade reading level standard, but is now going to a 6th grade standard because of the great concern over consumers' understanding of health text.

Mary Ellen is loathe to recommend a videotape collection because of the lack of currency of so many videotapes. She feels that a librarian or health educator must be present to help use the information. While health libraries are rather intimidating, Mary Ellen feels that public libraries make people feel more comfortable and are therefore a good place to get health information, but that public libraries tend to push health information into a corner and not provide as much help with it as they could.

Maryanne Blake mentioned the common worry among public librarians about the legal issues behind providing health information.

Tom McCormick asked if the group was recommending that efforts be focused on public libraries and school libraries.

Mary Ellen replied that, wherever the community gathers, we ought to offer health information. That might be at a pharmacy or at a variety of other locations.

With her extensive knowledge of the publication of health information, Mary Ellen says it is still very difficult to find good consumer-language health information.

Karen Pettigrew said that the preferred source for information depends a great deal on age. "Younger people and politicians think everything is on the web." The problem for them is knowing which web sites to visit.

Juli Gregory is concerned that sometimes that we hand out information to someone entering
our Information Center--and we don't really know all that is going on with the patient;: maybe our "generic" information isn't really what they need because they have "XYZ" going on too. She would still prefer to give out some
information rather than hold off and not try to educate patients, but wanted to point out there is always the
possibility we could give out information that is not as helpful as we hope. She prefaces the delivery of information to patients with the comment that this is "generic" information about the topic they asked us about--that their
specific situation may require other or additional information.

Anne Haley said that public libraries have reference desk standards that limit the role librarians take. For example, in legal questions, the librarians can only read the statutes, not apply any interpretation whatever.

Nancy Press asked if that's enough in health care. Is it enough to simply read definitions to patrons rather than trying to meet the actual information needs.

Anne said that most public librarians have no knowledge of medicine or health so cannot offer anything further. Mary Ellen said that public librarians cannot be expert in every area.

Patty Owen offered a partnership as a solution. The public librarian can refer the patient to health educators who do have expertise.

Michele Spatz is trying to develop a course on health information literacy for librarians. She gave some very simply hints of how to recognize and help patrons who cannot understand the materials available. She offers to read the material aloud to them or she audiotapes the materials for home use. She hopes that soon prescriptions and patient instructions will be pictorial.

Anne Haley said that training is needed locally, not just in the I-5 corridor.

Margo Harris suggested a cooperative approach to the problem of literacy. She says many schoolchildren cannot read their health textbooks. She has used the talents of reading specialists to train health educators how to recognize a non-reader and how to help people read better. She said that often the reading problem is not the actual written word, but rather the form and features of the tools (distracting side bars, too many focal points on the page, etc.)

Susie McIntyre reminded the group that people who are not literate often don't even start to look for information. Their attitude of self-efficacy when it comes to the assimilation of written information is so low that they won't try. We have to encourage self-efficacy to start with. We need a behaviour change campaign. When we speak of underserved populations, we start with a different community norm--"what's the word on the streets." We need a campaign that stresses messages such as, "The more you know about HIV the longer you live."

Karen Pettigrew asked if research has been done on awareness of NLM products and recommended that NLM get congressmen to talk about NLM products as good publicity. Cecilia Durkin answered that NLM has concentrated thus far on creating materials before promoting awareness, but that NLM staff knows that awareness is a major issue. NLM has worked to have NLM products well indexed and easier to find on the web.

Karen recommended that the RML first identify access points for a diffusion model. Nancy Press asked participants to detail some of the access points they see for underserved populations. Participants responded that access points vary a great deal from community to community, and that any information which clashes with the consumer's world view won't work. Judith Bendersky reminded the group of the tenets of health education, considering what is important and what is changeable. With those provisos, a start would be:

  • hairdressers and barbers
  • churches
  • in the Latino community the patrones or lay leaders
  • any setting where people come together and share information
  • food banks
  • playgrounds
  • signs on buses
  • listservs
  • migrant farmworker clinics
  • tribal clinics
  • public service announcements
  • senior centers

Nancy Press asked what partnerships would be best for the RML? Where can she make an impact that will go beyond the initial contact? Patty Owen responded that the main job is to reach all health professionals, public health nurses, community health workers, etc. who give health information to people and make sure that those intermediaries know where to find good health information. Patty said that, if the RML prepares a presentation and trains people, thn those people can go on to train others. Participants also recommended that, when working with a group,or profession, the RML co-teach with a member of that group. Participants came up with the following list of partners who need to know about consumer health information.

  • health educators (Margo Harris said that many of her colleagues do not know how best to find information.)
  • Health Maintenance Organizations
  • public health workers
  • important people in each community, community leaders
  • politicians
  • public librarians
  • state-wide health organizations
  • state health certification boards
  • American Medical Writers Association
  • Alaska Association of Non-Profits
  • web developers creating health sites in the Pacific Northwest (so that they will learn to link to NLM and will not all be recreating a health web site)
  • public health departments (who are very concerned about fulfilling Healthy People 2010, chapter 11)
  • state health authorities
  • get on the University's list of speakers
  • telephone triage nurses
  • students in health programs especially through problem based learning courses (medical students, nursing students, pharmacy students, etc.)
  • faculty in health programs, since practitioners usually keep doing what they learned in school
  • advertisements in professional journals, such as JAMA
  • Medcon (This is a hotline that can be used by physicians all over the Pacific Northwest to connect with a specialist at the UW. One of the specialties could be consumer health information.)

There was much concern that every health agency in the region is preparing web pages with links to health information without knowing what good information is out there and without taking advantage of the excellent work already done by NLM. Michael Boer suggested that NLM find a way to let individual agencies add their logos to NLM health information. Often health agencies do not want people to leave their own sites.

Patty Owen said that the NLM funding given by the RML made a huge difference for public health workers in Alaska and that such funding should continue.

Susie McIntyre worried about the maintenance of technology when grants are made. The grants often pay for equipment to be installed, but grantees need more help in planning for maintenance. Kent Unruh said that every grant with equipment should include some kind of service contract or maintenance contract.

Michele Spatz is concerned about getting good specific information. She said that there is good general consumer health information, but when patrons have very specific concerns the information is hard to find and is often in a format that doesn't work for the patron.

Tom McCormick and Mario Javier Pineda both mentioned health professionals' pressures of information and of time. Any work that librarians recommend has to help cope with those pressures, not increase them.

Anne Haley suggested that there be a network of health reference librarians available on a real time basis for back up and referral with difficult health questions.

Cezanne Garcia was concerned about continuity in any outreach. She urged that the RML commit to follow-up. Where computers have been installed she suggested requiring that grant recipients join a list serv or that they promise to contact community leaders for awareness and publicity. Nancy Press said that, in the library outreach evaluation literature we found that follow-up is an area where health librarians to date have not done a good job and that we know we need to do more.

Mario Javier Pineda said that the message to students needs to be sexy. He did a casual survey of his fellow medical students and found that almost all knew of PubMed, but none knew of any of the other NLM products and services. Mario recommended that librarians work more closely with faculty and students especially on the assignments that have a strong research, chart review, or epidemiologic element. Cezanne suggested that librarians lobby to have health student assignments include consumer health information.

Nancy Press asked what the people sitting around the table could offer as partners.

Karen Pettigrew said that the Information School could help with designing instruments (such as surveys and assessments)

Judith said that health educators are very good at tailoring information. She "Alaskanizes" much information in her work. Health educators are very good at adapting materials, which might also mean adapting electronic resources into paper.

Cezanne Garcia said that the patient educators at the UW could get the RML in touch with a large variety of interpretors and translators, since Nancy Press had expressed the concern that not many librarians are experts in other languages or cultural competence for a wide variety of cultures.

Margo Harris said that, while the RML might emphasize electronic delivery of information, the ultimate delivery is likely to be non-electronic with underserved populations. The RML might use electronic delivery to get information to the intermediaries, but then the format will have to be changed in many cases.

Next Steps

Maryanne Blake and Nancy Press announced that the RML will set up a discussion list for continuing discussion with this stellar group.

Nancy said that only this one in-person meeting has been funded, but that she sees that this group could be of great ongoing help. For example, Nancy will need to know of local, state, and regional professional meetings that would be good opportunities for publicity and training.

Nancy thanked the group for coming and participating so fully, in spite of the earthquake.

Minutes by Nancy Press, March 7, 2001, revised March 21, 2001