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Consumer health information from both sides of the reference desk.


ABSTRACT

THIS ARTICLE ADDRESSES ISSUES surrounding sur·round  
tr.v. sur·round·ed, sur·round·ing, sur·rounds
1. To extend on all sides of simultaneously; encircle.

2. To enclose or confine on all sides so as to bar escape or outside communication.

n.
 the provision of consumer health information in public libraries. Barriers to the use of public libraries by health care consumers are explored. Once a person has decided to try the public library as an avenue for searching for health information, interactions with library staff may still pose some challenges, both for the library user and for the librarian (1) A person who works in the data library and keeps track of the tapes and disks that are stored and logged out for use. Also known as a "file librarian" or "media librarian." See data library.

(2) See CA-Librarian.
 at the reference desk. Perceptions of the library as a place for health information often differ. Awareness of these issues can be helpful for both parties. The National Network of Libraries of Medicine can assist with training, Web resources, and funding for projects involving health information outreach Outreach is an effort by an organization or group to connect its ideas or practices to the efforts of other organizations, groups, specific audiences or the general public.  to consumers.

INTRODUCTION

In an article that appeared in the Seattle Times on December 3, 2003, Jack Slater slat·er  
n.
1. One employed to lay slate surfaces, as on roofs.

2. See pill bug.

3. See sow bug.

Noun 1.
 writes,
   Conversations with doctors are often confusing for me. They might
   well have warned me about the [procedure], but I didn't catch it.
   They carefully explain things to me, and I make like the
   intelligent, deeply comprehending person I wish I could be. I nod
   and furrow my brow. The doctors' words run down one of my deep
   furrows and keep right on running, out to the foggy sunset. My wife
   is usually with me at these appointments, taking notes. Then, while
   driving home, she tries to explain what was said. I just can't
   focus on all the variables. (Slater, 2003)


While Slater is able to express his experiences with humor humor, according to ancient theory, any of four bodily fluids that determined man's health and temperament. Hippocrates postulated that an imbalance among the humors (blood, phlegm, black bile, and yellow bile) resulted in pain and disease, and that good health was , with which we can all probably relate, it is also likely that his situation is all too common. Many health care consumers do not lack for health information, but instead are overwhelmed o·ver·whelm  
tr.v. o·ver·whelmed, o·ver·whelm·ing, o·ver·whelms
1. To surge over and submerge; engulf: waves overwhelming the rocky shoreline.

2.
a.
 by it. In the example of Jack Slater he states that it is not until after his interaction with his physicians that he begins to attempt to process the information he received at his appointment.

Patients and consumers are taking more responsibility for their own health care as the health care system increasingly involves patients and families in treatment decisions. Patients want to participate in shared decision making. Also, patients are having to be more assertive as·ser·tive  
adj.
Inclined to bold or confident assertion; aggressively self-assured.



as·sertive·ly adv.
 due to Health Maintenance Organizations and insurance constraints CONSTRAINTS - A language for solving constraints using value inference.

["CONSTRAINTS: A Language for Expressing Almost-Hierarchical Descriptions", G.J. Sussman et al, Artif Intell 14(1):1-39 (Aug 1980)].
 on usage of the health care system. However, in order to make the best decisions, people need not just access to information but time to process and evaluate the information they receive. They also need reliable, accurate information in a digestible digestible

having the quality of being able to be digested.


digestible energy
the proportion of the potential energy in a feed which is in fact digested.

digestible protein
see digestible protein.
 form. The question becomes, How can health consumers access quality health information, judge its reliability, and decide what to do when given many choices? Also, where do librarians This is a list of people who have practised as a librarian and are well-known, either for their contributions to the library profession or primarily in some other field.  fit into the scheme of helping consumers with these questions?

People faced with health care decisions need to be informed, and certainly "healthcare providers are the preferred information source when individuals need treatment for a disease or condition, but ... other sources of information--such as public and medical libraries, pharmacists This is a list of notable pharmacists.
  • Dora Akunyili, Director General of National Agency for Food and Drug Administration and Control of Nigeria
  • Charles Alderton (1857 - 1941), American inventor the soft drink Dr Pepper
  • George F.
, and community organizations--also play an important role in providing health information" (Lyon Lyon
 English Lyons

City (pop., 1999: city, 445,452; metro. area, 1,348,932), east-central France. Located at the confluence of the Rhône and Saône rivers, it was founded as the Roman military colony Lugdunum in 43 BC (see
, 2001, p. 107). While public libraries may not be the first stop (see Nancy Press's article in this issue), it has been discovered that a good percentage of health consumers do end up in public libraries in their quest for Verb 1. quest for - go in search of or hunt for; "pursue a hobby"
quest after, go after, pursue

look for, search, seek - try to locate or discover, or try to establish the existence of; "The police are searching for clues"; "They are searching for the
 health information.

This article addresses issues surrounding the provision of consumer health information by public libraries. We will discuss barriers to the use of public libraries by health care consumers. We will also examine the interactions between library users and reference staff once a person has made the decision to try the public library as an avenue for searching for health information. We will point out that patrons' and librarians' perceptions of the library as a place for health information often differ. We will also discuss perceptions and expectations of library staff members from both sides of the reference desk--both patron and librarian. Lastly, suggestions will be offered for finding the middle ground, where people on both sides of the desk can better understand each other. The role of the National Network of Libraries of Medicine will also be described.

THE PATRON'S PERSPECTIVE

Barriers to Accessing Health Information in Public Libraries

Mary C. Chobot's analysis in the booklet "The Challenge of Providing Consumer Health Information Services See Information Systems.  in Public Libraries" is very thought provoking pro·vok·ing  
adj.
Troubling the nerves or peace of mind, as by repeated vexations: a provoking delay at the airport.



pro·vok
 (Chobot, 2003). The demand for consumer health information in insatiable but, as other authors note, some consumers are "still on the sidelines On the sidelines

An investor who decides not to invest due to market uncertainty.


on the sidelines

Of or relating to investors who, having assessed the market, have decided to avoid committing their funds.
" (Tu & Hargraves, 2003). In fact, some consumers have not yet entered the library seeking expert help from library staff. While the library can be the first access point to additional information resources (1) The data and information assets of an organization, department or unit. See data administration.

(2) Another name for the Information Systems (IS) or Information Technology (IT) department. See IT.
, some potential patrons have not yet overcome the barriers of walking through the library door, speaking to a librarian face-to-face, or visiting the library Web site from home or another community location. How do public librarians overcome the challenges that keep some patrons on the sidelines, or reach out to community residents who are not yet library users to share important health information resources?

One dilemma may be that we tend to believe that public libraries serve a "general public" or that a selection of general health references serves all or even most patrons. Librarians have quickly learned that their patron audience has never been more diverse. They confront language and cultural challenges, literacy challenges, technology challenges, age-related issues, and a range of sensitivity and emotional issues before they even get to the body of health information resources in the library or available online. Many health care consumers have learned the phrase "medical home." At the core of a medical home is your "family doctor." The goal is for everyone to have a medical provider who knows him or her and provides the bulk of his or her medical care. For libraries, a community resident may need to recognize a "library home"--a library where they can go and be included and respected, find resources that meet their needs, see materials in their language at a reasonable literacy level, feel welcome, and are invited in to participate.

Chobot quotes one community health librarian who says she "would rather fill her shelves with the most usable USable is a special idea contest to transfer US American ideas into practice in Germany. USable is initiated by the German Körber-Stiftung (foundation Körber). It is doted with 150,000 Euro and awarded every two years.  information and not necessarily the most diverse" (Chobot, 2003). Her users (those who come through the door) are primarily white Americans The term white American (often used interchangeably with "Caucasian American"[2] and within the United States simply "white"[3]) is an umbrella term that refers to people of European, Middle Eastern, and North African descent residing in the United States.  over the age of fifty. She continues, "You learn to know what your community wants and you stock what they need" (Chobot, 2003, p. 2). While that sounds reasonable, it does not address the needs of residents not yet reached. When it comes to consumer health information, librarians need to consider more outreach to their communities to learn what their whole community needs. If community members do not perceive the library as a place to find the answers to their health questions, they will not visit--in person or online.

The Center for Children with Special Needs, a program of Children's Hospital A children's hospital is a hospital which offers its services exclusively to children. The number of children's hospitals proliferated in the 20th century, as pediatric medical and surgical specialties separated from internal medicine and adult surgical specialties.  and Regional Medical Center in Seattle, was privileged to receive a National Network of Libraries of Medicine (NN/LM NN/LM National Network of Libraries of Medicine ) Access to Electronic Health Information award. The work of the project gave center staff an opportunity to work with parents of children with special health care needs and a remarkable group of dedicated librarians working in community-based libraries in Washington State. Ideas from both parents and librarians and the work of the project will be shared in this article. The early part of the project included parent feedback groups conducted in English and Spanish Spanish, river, c.150 mi (240 km) long, issuing from Spanish Lake, S Ont., Canada, NW of Sudbury, and flowing generally S through Biskotasi and Agnew lakes to Lake Huron opposite Manitoulin island. There are several hydroelectric stations on the river.  with parents of children with special health care needs. One of the parents at the feedback groups noted that the most valuable Internet Internet

Publicly accessible computer network connecting many smaller networks from around the world. It grew out of a U.S. Defense Department program called ARPANET (Advanced Research Projects Agency Network), established in 1969 with connections between computers at the
 resource for her family was the National Organization for Rare Disorders site. To get full-text articles from this Web site, a library must subscribe. Since her library does not subscribe, she does not visit the library. It is a challenge for librarians to know what potential patrons need or what health information resources might bring them into the library and make them regular library users. One strategy might be to utilize neighborhood or community focus groups to guide materials selection and health-related Web links on a library's Web site. If a library is unable to provide requested subscriptions or text materials, a librarian can explore interlibrary in·ter·li·brar·y  
adj.
Existing or occurring between or involving two or more libraries: an interlibrary loan; an interlibrary network. 
 loan or a relationship with an area medical library to supplement existing resources.

Filling in the Gaps

Often in the library's health book collection the needs of a more general audience are well met. If you review the health links on library Web sites, you will find a grouping of useful, general health Web sites and searchable databases Refers to databases on the Web that are searchable by typing in a query. The term is quite redundant because all databases are searchable. In fact, that is one of their major features. . If you have a more specific need, such as my clients' focus on information about children with special health care needs, you may find your information search more frustrating frus·trate  
tr.v. frus·trat·ed, frus·trat·ing, frus·trates
1.
a. To prevent from accomplishing a purpose or fulfilling a desire; thwart:
, less satisfying, and more time consuming. Librarians have done a good job meeting the needs of the general health information consumer, but one of the challenges they now face is being more responsive to the special needs health consumer. As librarians review their current users of library resources, it might be useful to consider who from the community is missing and consider outreach activities to reach those missing patrons, offering and promoting health information resources to reach special or less common health information needs.

Library staff sometimes feel they are not experienced enough to respond to special health information or health care needs requests. Every librarian has his/her favorite topic, and health may not be on the "favorites Another term for bookmarks, which was popularized by Microsoft's Internet Explorer browser. See favicon and Internet Explorer. " list. As I approached regional public library systems about participating in our NN/LM project, some public library staff were familiar with the Regional Medical Library (RML RML right middle lobe (of lungs). ) and were taking advantage of resources available there. Others had never been in touch with an RML or did not know of the services available. Some library staff were hesitant hes·i·tant  
adj.
Inclined or tending to hesitate.



hesi·tant·ly adv.
 to contact a hospital-based medical librarian for assistance with consumer health questions. There was a sense of intimidation by that "expert," as well as a concern that hospital-based medical librarians were not funded to serve community members. As the complexity of consumer health information being searched increases, there is an even greater need for those community-based librarians to interact and collaborate in an efficient way to support consumer health information needs.

Start at the Beginning

While libraries and their resources are very familiar to library staff, they may be mysterious to the infrequent in·fre·quent  
adj.
1. Not occurring regularly; occasional or rare: an infrequent guest.

2.
 library user. One helpful point raised by Phil Agre in his article "How to Help Someone Use a Computer" is that "You've forgotten what it's like to be a beginner" (Agre, 1996). It is hard for library staff to consider that a visitor has never been to the library before or that a visitor has not searched on the Internet. Even more difficult to imagine is a long-time library patron who has not used the library for health information but now has that need. It is easy for library staff to assume a patron is knowledgeable and able to use the wealth of library resources to seek consumer health information. For some, an orientation or introductory tour is needed first to enable patrons to take a new look at library resources with their new consumer health information focus. More and more libraries subscribe to Verb 1. subscribe to - receive or obtain regularly; "We take the Times every day"
subscribe, take

buy, purchase - obtain by purchase; acquire by means of a financial transaction; "The family purchased a new car"; "The conglomerate acquired a new company";
 health databases and real-time 1. real-time - Describes an application which requires a program to respond to stimuli within some small upper limit of response time (typically milli- or microseconds). Process control at a chemical plant is the classic example.  services such as Ask Us 24/7. These may be exactly the resources that patrons seeking consumer health information need, but they may be unfamiliar with how to use them. Librarians are challenged with designing strategies to support adult learning when many adults are uncomfortable asking for the help they need.

In feedback groups and workshops with parents of children with special health care needs, parents acted surprised and almost unanimously noted, "I never thought of going to the library or asking a librarian for help. I thought I was supposed to be able to find anything online, and I should just do that" (Parent Focus Group, 2003). Those same parents admitted frustration and being overwhelmed by the number of "hits" they got when they searched the Internet for consumer health information. They expressed concern that they did not know whether a site was credible or not or who to believe. Still, they did not seek the advice of a librarian. Chobot notes that "Many public libraries assist their users in finding reliable health information online by providing lists of evaluated sources on the library's web site" (Chobot, 2003, p. 9). Parents also appreciated receiving these links on paper handouts. If a parent was too uncomfortable speaking directly with a library staff member, print information available without asking was an acceptable substitute.

Parents are a good source of suggestions on how to make it easier to find consumer health resources in the library--online and offline. These can be simple solutions. A frequent request from parents is a short printed list of two to three "starting point Noun 1. starting point - earliest limiting point
terminus a quo

commencement, get-go, offset, outset, showtime, starting time, beginning, start, kickoff, first - the time at which something is supposed to begin; "they got an early start"; "she knew from the
" Web sites on specific health issues. Sometimes there is a delay in receiving information when an interlibrary loan is necessary. Often a parent feels that his or her need is urgent, and some information is needed immediately. One parent described it this way: "If I visit the library and the item I want is not available there, I'll wait for interlibrary loan. But I like to leave with something in my hand. My librarian finds an article or some information she shares and hands to me. I know the librarian listened to me and tried to find something for me to read right now. That means a lot to me" (Parent Focus Group, 2003).

Complementary Roles

Two very different roles merge when a patron approaches a library staff member for consumer health information. On the one hand, those roles are complementary--health information seeker plus health information expert. On the other hand, they may not be well understood by both parties. One of the things we have learned in workshops offered in the state of Washington is that parents of children with special health care needs have some interesting ideas about what librarians do in 2004. At the same time, librarians have some interesting ideas about what the parents know and do in the library! In our NN/LM project, parents and librarians are working together as a team to develop activities to share information, bring more parents to the library, and connect parents with health information specific to the topic of special health care needs. The conversation and exchange of ideas that happens in each pair is invaluable. One of the early realities discovered by the parents is that the person behind the library desk may or may not be a librarian. That was a surprise to them but not a remarkable concern. Whoever is behind the desk was perceived as someone interested in helping the parent with his/her health questions.

The Reference Interview

Consumer health information questions fall into what the Nebraska Library Commission (1994-2004) calls "special kinds of questions." Health and legal questions fall into this category, and it is useful to share the commission's major points about health questions here:

* "In answering medical and legal questions it is necessary to have a good understanding of the difference between providing information and giving advice.

* As with all questions, we can't give our own personal opinions. We help patrons find information in our sources, but we don't interpret the information for them.

* If you read something to a patron from a medical dictionary A medical dictionary is a lexicon for words used in medicine. The three major English language medical dictionaries are Stedman's, Taber's, and Dorland's medical dictionaries. , you can't tell the patron that the symptoms sound similar to the ones described by the patron.

You can do the following:

* Help locate books or articles on the subject.

* Show patrons how to use the books and indexes.

* Help patrons use directories of professionals.

* Help patrons identify other resources in the community that can help.

* Refer these questions as you would other questions, being sure patrons understand that they will be getting library information but not professional medical or legal advice.

* Caution your patrons that information in these areas is complex and changes quickly.

* Be sure you understand your own library's policies and procedures Policies and Procedures are a set of documents that describe an organization's policies for operation and the procedures necessary to fulfill the policies. They are often initiated because of some external requirement, such as environmental compliance or other governmental  on handling these questions.

MAJOR POINT: We can help patrons find medical and legal information, but must avoid giving medical or legal advice" (Nebraska Library Commission, 1994-2004).

The commission makes clear and valid points. The challenge is that the patron does not always understand that this is the approach the librarian is taking, or blurs the line between health information and health advice. With the widespread availability of consumer health information, it is easy for the patron to generally categorize cat·e·go·rize  
tr.v. cat·e·go·rized, cat·e·go·riz·ing, cat·e·go·riz·es
To put into a category or categories; classify.



cat
 any information offered in the library as medical or health information and not to recognize or believe they are requesting medical advice.

Allcock and others provide helpful explanations of the reference interview. Allcock notes that patrons come to the library at any point in their health care, diagnosis, or information search. They may be looking for Looking for

In the context of general equities, this describing a buy interest in which a dealer is asked to offer stock, often involving a capital commitment. Antithesis of in touch with.
 information for themselves, other family members, or friends (Allcock, 2000). Allcock refers to McClure: "Conducting a reference interview is a vital component of helping the patron find relevant information. During the interview, the librarian seeks to identify the users' specific need for health information by asking specific questions which aid in defining their need" (Allcock, 2000, p. 22). Allcock continues by adding:
   The purpose of the reference interview is to help clarify the
   question asked by the library user in order to direct them to
   information sources which will answer the question. The librarian's
   role is to direct the user to information, not to answer the
   question based on personal knowledge. This is an essential point,
   particularly with health information. It is important to
   substantiate all information in reputable sources. (Allcock, 2000,
   p. 22)


Again, the author offers clear and valid points, and they are points that may not be understood by the patron. To borrow from Phil Agre once more: "If it's not obvious to them, it's not obvious" (Agre, 1996). Library staff may formally or informally implement a reference interview, and it is a basic tool of library practice. Some editorializing or explaining why librarians do what they do in the reference interview may resolve some misunderstandings or discomfort Discomfort may refer to pain, an unpleasant sensation, or to suffering, an unpleasant feeling or emotion. . One remarkable comment from a parent feedback group was from a parent who had been disappointed when a library staff member asked her how to spell her child's condition. "Why is she asking me how to spell it? She's a librarian; she can spell everything" (Parent Focus Group, 2003). Basic strategy to gain clarity and accuracy of the term was perceived as insensitivity in·sen·si·tive  
adj.
1. Not physically sensitive; numb.

2.
a. Lacking in sensitivity to the feelings or circumstances of others; unfeeling.

b.
. What library staff do in a reference interview, how to search online, and how to use different subscription databases--either at the library or remotely--are all strategies that may not be obvious to patrons who want and need the benefits of those tools. If a parent comes to the library in less than a calm state or is just overwhelmed by health information or a diagnosis that has just been received, an oral explanation of library tools may not be helpful. Printed materials that review those resources and a printed list of two or three useful health Web sites as starting points may serve the patron well later, at a calmer time.

Providing Library Assistance without Face-to-Face Interaction

Some parents acknowledged that they needed health information, but they were unable to ask a librarian Ask a Librarian is Florida's Statewide Collaborative Live Virtual reference Service. Ask a Librarian began as a partnership between the College Center for Library Automation (CCLA) and the Tampa Bay Library Consortium (TBLC).  directly for assistance. In our NN/LM project workshops, parents suggested a number of strategies librarians might use to help parents get needed information while avoiding direct contact or direct verbal requests. Some of these ideas included:

* Increasing health links on the library's Web site

* Offering patrons a "short list" of Web sites as starting points for different health topics. Two to three sites, evaluated by the librarian, would be helpful

* Placing a service like Ask Us 24/7 that can be easily located on the library's home page

* Making more information available in print

* Grouping book holdings on different health topics in a prominent way, making them easier to find

* Offering a written health information request form that might include two to three key questions that could be completed and handed to the librarian

* Offering free or fee-for-service PubMed searches via written request or an online form

Evaluating Health Information on the Web

There was an interesting discrepancy DISCREPANCY. A difference between one thing and another, between one writing and another; a variance. (q.v.)
     2. Discrepancies are material and immaterial.
 between parents' and librarians' beliefs regarding evaluation of health-related Web sites. There was total agreement that health Web sites, and probably all Web sites, needed to be evaluated. There was agreement that there was potentially dangerous information online. Librarians were eager to teach parents how to evaluate health-related Web sites. Parents were eager to have librarians do that evaluation and share only evaluated Web site links with them. While it is certainly possible for parents in our project and other library patrons to learn Web site evaluation skills, confidence was expressed in the expertise and training of the library staff to complete this task. Parents were much more comfortable when either a library staff member or their health care provider offered health-related Web site links. The parents had a high level of discomfort if they were responsible for making that determination, even when given specific checklists or tools to use for the evaluation process.

Other Roles of Librarians

Another surprise for parents in our NN/LM project was the librarian's role as a clearinghouse for community resources. From tax forms to voter registration Voter registration is the requirement in some democracies for citizens to check in with some central registry before being allowed to vote in elections. An effort to get people to register is known as a voter registration drive. Centralized/compulsory vs. , a public library offers many community connections. All the parents in our project are strongly linked with two important, statewide community organizations--Washington State Fathers Network and Washington State Parent to Parent Support Programs. These organizations offer resources to families with children with special health care needs in all counties in the state. Prior to our project, the parents had missed the opportunity to promote their organizations through the library's channels. Librarians had missed the opportunity to share the resources with other patrons. Now library systems involved in the training project have information about the two organizations--online and in print. The library staff better understand the health information needs of these families, and they feel better prepared to meet that need when family members come to the library. Some of the library Web sites now include a link to the Center for Children with Special Needs, a program of Children's Hospital and Regional Medical Center in Seattle. That link offers library patrons a starting point that is specific to special health care needs.

Sometimes Less Is More

The expertise and broad-based skills of public and medical librarians is nothing short of astonishing a·ston·ish  
tr.v. as·ton·ished, as·ton·ish·ing, as·ton·ish·es
To fill with sudden wonder or amazement. See Synonyms at surprise.
. Their profession and professional world is dynamic as more information is added, updated, refuted, and challenged. Yet library patrons show up at the reference desk or the main circulation desk expecting all questions to be answered--and not just answered, but answered quickly, correctly, and with great sensitivity! As librarians approach consumer health information, I suggest that less may be more, and patrons should be invited to guide the search and the depth of the information shared. Patrons can be prompted to ask for more information or for additional detail. It is easy to overload See information overload and overloading.  the consumer health information seeker with no obvious signs of that burden. Your patron may keep smiling and nodding nod  
v. nod·ded, nod·ding, nods

v.intr.
1. To lower and raise the head quickly, as in agreement or acknowledgment.

2. To let the head fall forward when sleepy.

3.
 his or her head even though information transfer has ceased. Librarians will still find themselves walking a fine line between pointing patrons toward the appropriate resources, and helping them use those resources, and giving them the answer or interpreting the information. Librarians know well that there are times when a patron is unable to use the resource or understand the information shared. At those times, the librarian works within his or her professional processes and ethics ethics, in philosophy, the study and evaluation of human conduct in the light of moral principles. Moral principles may be viewed either as the standard of conduct that individuals have constructed for themselves or as the body of obligations and duties that a  to meet the information need. Parents (patrons) would only add, "It's okay to show emotion if we show emotion. And please have a box of Kleenex ... at every desk" (Parent Focus Group, 2003).

Publicity and Promotion

One additional consideration for library staff is the need to promote what they do in a community. Public libraries are a treasure in neighborhoods nationwide. Sometimes they are an area's best kept secret. Libraries have changed with the times and kept up with the Information Age. Patrons and potential patrons have not kept up quite as well in their understanding of what libraries do! We would encourage all libraries, regardless of location, to develop and implement a marketing plan to share that richness with the larger community. It is important to tap patron feedback, but needs assessment and feedback must reach beyond current users. Publicity and promotion may cause your library seams to burst, but no library or librarian wants to miss an opportunity to reach new patrons. Know that outreach activities are critical to reaching those community members still unfamiliar with your services or still on the health information "sidelines Sidelines

Hypothetical position referring to noninvolvement in a stock; merely watching.
." Refuse to believe that residents are not visiting you--online or in person--because they do not need or want what you offer. You have a whole world of patrons that fall into that elusive category--not yet reached. The ultimate challenge for you is to bring those community members through your real or virtual doors.

THE LIBRARIAN'S POINT OF VIEW

The barriers that consumers face in accessing health information in libraries have been discussed, but what are some of the problems that librarians encounter in providing health information to consumers?

In a 1990 survey of public libraries in Ontario Public libraries in Ontario is a list of '''public libraries in the Canadian province of Ontario. Background
Ontario public libraries are created by municipal by-laws and governed by public library boards.
, Canada, reference librarians reported that the major problems they experienced in providing health information were incomplete or unclear queries from consumers, lack of adequate and appropriate resources in library collections, and a reluctance to provide health information for fear of being perceived as giving medical advice and interpretation.

In "Conducting the Reference Interview," the authors state that
   A librarian once told us that her least favorite reference questions
   concerned legal and medical information needs. Both types of queries
   undoubtedly present special challenges, especially for public
   librarians, who are unlikely to be specialists but have to cope with
   unfamiliar terminology, complicated or inadequate resources, and
   tricky ethical issues (including the 'information vs. advice'
   problem). In addition, users who need consumer health or legal
   information may be reluctant to disclose the problem to the
   librarian. (Ross, Nilsen, & Dewdney, 2002, p. 157)


Some strategies to help reduce confusion and discomfort are discussed below.

Pressures Librarians Face

There are several practical and psychological pressures that librarians face in providing health information to consumers:

* Difficulty in keeping up in a quickly changing area

* Difficulty in utilizing specialized spe·cial·ize  
v. spe·cial·ized, spe·cial·iz·ing, spe·cial·iz·es

v.intr.
1. To pursue a special activity, occupation, or field of study.

2.
 medical terminology Medical terminology is a vocabulary for accurately describing the human body and associated components, conditions, processes and procedures in a science-based manner. This systematic approach to word building and term comprehension is based on the concept of: (1) Word roots, (2)

* Consumer confusion regarding limitation of the librarian's role in providing information, not medical advice

* Needing to find out what the user really wants to know. Consumers are often unaware of the nature of medicine or medical literature and ask questions that are too general, such as "Where are your medical books?" or too specific, such as "I was told to avoid infections after a surgical procedure, but now my doctor want to do a trans-rectal prostate prostate /pros·tate/ (pros´tat) a gland surrounding the bladder neck and urethra in the male; it contributes a secretion to the semen.prostat´ic

pros·tate
n.
The prostate gland.

adj.
 test--isn't that putting me at risk?"

* Being able to handle sensitive, emotional questions

* Gaining the patron's trust and acceptance in order to probe for further details to answer their question

These pressures are magnified in public libraries where librarians are often generalists and need to keep up to date in many subject areas. Librarians can help alleviate Alleviate
To make something easier to be endured.

Mentioned in: Kinesiology, Applied
 some of these pressures by gently guiding patron inquiries to help them gain appropriate information.

Consumer Expectations

While ready access to electronic resources may have partially solved the problem of inadequate library collections, this has only raised consumers' expectations on what and how quickly health information can be provided. For example, many consumers believe that everything is available on the Internet and for free. Developing and maintaining electronic health resources is a challenging and time-consuming undertaking. Educating and assisting consumers in evaluating Web-based resources presents far greater problems than print resources, as the Internet is dynamic and filled with Web sites with little quality control or standardization standardization

In industry, the development and application of standards that make it possible to manufacture a large volume of interchangeable parts. Standardization may focus on engineering standards, such as properties of materials, fits and tolerances, and drafting
.

Examples from the Consumer Health Information Service

At the Consumer Health Information Service (CHIS CHIS Chiapas (Estado de México)
CHIS Channel Islands National Park (US National Park Service) 
), based at the Toronto Reference Library Originally called the Metro Toronto Reference Library, the six-floor library in Toronto, Ontario, Canada opened in 1977 and was designed by architect, Raymond Moriyama. The library is part of the Toronto Public Library system, but its collection is non-circulating. , we have been providing consumer health information (CHI (Computer Human Interface) Typically refers to the devices and associated applications used by humans to interact with computers. For example, a CICS data entry screen displayed on a 3270 terminal makes up a CHI for a banking application. ) since 1992. We have dealt with a diverse range of users and encountered many challenging situations. One of our most difficult situations is when a consumer is seeking information on a serious health condition for himself or herself, a family member, or a close friend. Often he or she is unaware of what the condition is or of a possible poor prognosis prognosis /prog·no·sis/ (prog-no´sis) a forecast of the probable course and outcome of a disorder.prognos´tic

prog·no·sis
n. pl. prog·no·ses
1.
. Or the consumer does know the "bad news" but has difficulty in discussing his or her information needs. These requests can be very hard for a librarian who empathizes with what the user is going through--the user may be emotionally distraught dis·traught  
adj.
1. Deeply agitated, as from emotional conflict.

2. Mad; insane.



[Middle English, alteration of distract, past participle of distracten,
 and need privacy and time.

Ethical Issues

Many CHI queries present ethical issues: CHIS has had questions from consumers who wanted to stop taking their medication (such as discontinuing antidepressants Antidepressants
Medications prescribed to relieve major depression. Classes of antidepressants include selective serotonin reuptake inhibitors (fluoxetine/Prozac, sertraline/Zoloft), tricyclics (amitriptyline/ Elavil), MAOIs (phenelzine/Nardil), and heterocyclics
) or wanted to take higher doses of medication (such as a consumer being treated for schizophrenia schizophrenia (skĭt'səfrē`nēə), group of severe mental disorders characterized by reality distortions resulting in unusual thought patterns and behaviors.  believing that their medication level should be increased). These decisions must be guided by health care professionals.

Consumers may turn to the library as a last resort for help. A woman brought in her baby who had a congenital congenital /con·gen·i·tal/ (kon-jen´i-t'l) existing at, and usually before, birth; referring to conditions that are present at birth, regardless of their causation.

con·gen·i·tal
adj.
1.
 condition. She had been told the baby had a poor prognosis and asked the librarian if her baby would be all right. While this high level of trust and confidence in the librarian's ability to help is flattering flat·ter 1  
v. flat·tered, flat·ter·ing, flat·ters

v.tr.
1. To compliment excessively and often insincerely, especially in order to win favor.

2.
, it puts a great deal of stress on the librarian. It is often difficult not to fall into the temptation Temptation
Terror (See HORROR.)

apple

as fruit of the tree of knowledge in Eden, has come to epitomize temptation. [O.T.: Genesis 3:1–7; Br. Lit.
 to answer the question "What would you do in my situation?" Librarians must find ways to refer patrons back to their health care providers for any type of question that might start with "Should I ...?"

Communicating the Limits of the Librarian's Role

The limits of the librarian's role are particularly difficult to communicate to consumers. Consumers often ask for advice when there are conflicting opinions regarding what treatment is best for a certain condition. One example of this would be the need to make a decision about hormone replacement therapy Hormone Replacement Therapy Definition

Hormone replacement therapy (HRT) is the use of synthetic or natural female hormones to make up for the decline or lack of natural hormones produced in a woman's body.
. When CHIS staff direct consumers to authoritative sources for definitions or suggest that they discuss treatment options with their health care provider, consumers sometimes remark "what good are the librarians" if we cannot answer their questions. This skepticism skepticism (skĕp`tĭsĭzəm) [Gr.,=to reflect], philosophic position holding that the possibility of knowledge is limited either because of the limitations of the mind or because of the inaccessibility of its object.  of professional ability can be difficult for some librarians to hear.

Amorphous Unorganized or vague. A lack of structure. For example, the amorphous state of a spot on a rewritable optical disc means that the laser beam will not be reflected from it, which is in contrast to a crystalline state which will reflect light. See crystalline.  Nature of CHI

Another problem is that it is difficult to put boundaries on what CHI is. According to according to
prep.
1. As stated or indicated by; on the authority of: according to historians.

2. In keeping with: according to instructions.

3.
 Patrick and Koss, CHI is "anything that enables individuals to understand their health and make health-related decisions for themselves or their family" (1995, p. 4). Consumer perception is that almost everything is health information if it potentially affects their health. For example, we have received questions that range from whom to contact about idling bookmobiles, disinfecting public computer terminals, and even reducing the "down time" of the online resources that one patron claimed was making him/her sick.

Expectation of Customization

Many consumers have a limited understanding of how medical literature is organized. At CHIS we have had caregivers trying to get information on someone else's behalf become frustrated frus·trate  
tr.v. frus·trat·ed, frus·trat·ing, frus·trates
1.
a. To prevent from accomplishing a purpose or fulfilling a desire; thwart:
 when the information available was not customized to their specific concern. For example, one consumer was seeking diet and nutrition information for breast cancer. This patron was only wanting to see resources for breast cancer and was not interested in more general information about nutrition and cancer. They were unwilling to accept that the more general information might be equally helpful. Libraries simply cannot anticipate every special health topic that may be requested and tailor resources to address all needs. They can, however, educate patrons about the nature of medical information and that some general information can be applied to more specific situations.

Attributes of a CHI Librarian

The connection forged between a librarian and consumer is much closer when providing CHI than with most other subject areas. The emotional response of the consumer has been widely written about, but the qualities of the librarian providing health information have not been as widely discussed.

It takes a certain type of individual to thrive in a CHI service--the most important attributes being

* A genuine interest in helping others find information to make informed decisions

* Sensitivity to the emotional state of the consumer and their need for privacy

* Empathy empathy

Ability to imagine oneself in another's place and understand the other's feelings, desires, ideas, and actions. The empathic actor or singer is one who genuinely feels the part he or she is performing.
 and excellent communication skills

* An appreciation of the right for consumers to have access to a wide range of information that may present conflicting views (and some views not shared by the librarian)

* Good and nonjudgmental non·judg·men·tal  
adj.
Refraining from judgment, especially one based on personal ethical standards.

Adj. 1. nonjudgmental
 listening skills

When I was asked during a recent presentation to a health sciences university class if I hired staff with health sciences subject background, I replied that the attitude of the potential staff was equally as important as subject expertise. Patrons are especially invested in health information questions because of the direct impact their choices may have on their health or that of a loved one.

Guidelines guidelines,
n.pl a set of standards, criteria, or specifications to be used or followed in the performance of certain tasks.
 for Providing CHI

Consumer health questions often arise out of personal needs and cannot be handled in a factual, impersonal im·per·son·al  
adj.
1. Lacking personality; not being a person: an impersonal force.

2.
a. Showing no emotion or personality: an aloof, impersonal manner.
 way. The sensitive and sometimes emotional nature of these requests make some librarians uncomfortable. There are guidelines and courses that can help.

The National Network of Libraries of Medicine (NN/LM) funded Web site, HealthInfoquest (National Network of Libraries of Medicine, 2003), has an extensive list of reference interview resources that outline the stages of a reference interview and provide examples of how to handle "in the news" and sensitive questions.

One particularly useful resource from Healthnet from the University of Connecticut Health Center The University of Connecticut Health Center is located on the site of the old O'Meara farms in the Farmington Heights section of Farmington, Connecticut. It is home to the University of Connecticut's schools of medicine, dental medicine, and graduate school in biomedical science.  (Lyman Maynard Stowe Library, 2000), provides the following guidelines to assist staff in handling personal health questions:

1. Determine why the person needs the information.

2. Be aware of the person asking the question.

3. Get as much information as possible.

4. Always check terms in a medical dictionary.

5. Do not provide a diagnosis.

6. Do not interpret medical information.

7. Understand that the specific information the person wants may not be available anywhere in the medical literature and describe the limitations of medical information.

8. Provide the most complete information needed to answer the person's specific request. Provide referrals.

For several years the Medical Library Association has also offered a continuing education continuing education: see adult education.
continuing education
 or adult education

Any form of learning provided for adults. In the U.S. the University of Wisconsin was the first academic institution to offer such programs (1904).
 course to deal with a range of these dilemmas entitled en·ti·tle  
tr.v. en·ti·tled, en·ti·tling, en·ti·tles
1. To give a name or title to.

2. To furnish with a right or claim to something:
 "Face to Face: Strategies for Effective Consumer Health Communication" (MLA MLA
abbr.
Modern Language Association

MLA n abbr (BRIT POL) (= Member of the Legislative Assembly) → miembro de la asamblea legislativa

MLA (Brit
 Net, 2004). There are also "trigger tapes" and videos that can be used for medical reference training (Health Sciences Library, 1995; King County Library System The King County Library System (KCLS) is a library system serving the residents of King County, Washington.

The King County Library System is one of the largest circulating libraries in the United States with 43 libraries, a Traveling Library Center, a mobile TechLab,
, 1986; University of Nebraska Medical Center In 1991, a technology transfer office was created known as UNeMed.

In 1997, the UNMC hospital merged with the nearby hospital operated by Clarkson College to become what was later renamed The Nebraska Medical Center.
, 2002). Several are listed along with the print resources in the references section.

THE ROLE OF THE NATIONAL NETWORK OF LIBRARIES OF MEDICINE

In 1998 the National Library of Medicine conducted a pilot project with public libraries to determine how training and other resources could empower empower verb To encourage or provide a person with the means or information to become involved in solving his/her own problems  them to be better equipped to answer health and medical questions. In this study, it was discovered that "health is a top-ten topic area and that a significant (but not precisely known) percentage of patrons seek health information at the library" (Wood et al., 2000, p. 321). They also discovered that "Some public libraries, especially smaller, more rural, or less economically advantaged libraries, seem to benefit significantly even from modest resources for enhanced health-reference materials or Internet-accessible computer terminals" (Wood et al., 2000, p. 321).

Currently, through the NN/LM, a training curriculum has been developed for public libraries to increase their confidence and skill in answering health-related questions. A Web resource has also been created to encourage public libraries to partner with members of the NN/LM and other community health agencies in order to increase their capacity for providing health information (National Network of Libraries of Medicine, 2004). Public libraries are encouraged to apply for funding to participate in community outreach projects surrounding health issues. The project described earlier in this article involving parents of children with special needs and community librarians is an example of a successful community outreach venture. There are myriad Myriad is a classical Greek name for the number 104 = 10 000. In modern English the word refers to an unspecified large quantity.

The term myriad is a progression in the commonly used system of describing numbers using tens and hundreds.
 other possibilities. Of course, the resources of the NN/LM are available to libraries regardless of whether or not they receive funding. Also, many of the member libraries of NN/LM are open to receiving inquiries from their public library colleagues and to offer support and advice regarding medical information and strategies for providing it.

At the forefront of the issues that arise in providing consumer health information is the ongoing need to educate library patrons about the complexity of health information. Librarians need to be sensitive to the fact that not all patrons are familiar with the limitations librarians deal with in providing health information. Patrons need to realize that there is not always the "perfect answer" to their questions and that librarians will make every effort to provide quality, authoritative, and balanced information to support consumers' desire to learn as much as they can about their health concerns. There are resources (many of them listed below) to aid in providing quality health information services.

REFERENCES

Agre, P. (1996). How to help someone use a computer.. Retrieved August 24, 2004, from http://polaris.gseis.ucla.edu/pagre/how-to-belp.html.

Allcock, J. (2000). Helping public library patrons find medical information--The reference interview. Public Library Quarterly, 18(3/4), 21-27.

Chobot, M. (2003). The challenge of providing consumer health information services in public libraries. Washington, DC: American Association for the Advancement of Science American Association for the Advancement of Science (AAAS), private organization devoted to furthering the work of scientists and improving the effectiveness of science in the promotion of human welfare. .

Health Sciences Library, State University of NewYork at Buffalo. (1995). 20 questions: A trigger tape for medical reference librarians [Video tape]. Buffalo, NY: State University.

King County Library System, Support Services support services Psychology Non-health care-related ancillary services–eg, transportation, financial aid, support groups, homemaker services, respite services, and other services  Division. (1986). Questions of health: Trigger tapes on the health care interview [Video tape]. Seattle, WA: King County Library System.

Lyman Maynard Stowe Library. (2000). Guidelines for providing medical information to consumers. In Healthnet." Connecticut consumer health information network. Retrieved August 24, 2004, from http://library.uchc.edu/departm/hnet/guidelines.html.

Lyon, B. J. (2001). The National Library of Medicine and health information for the public. Public Libraries, 40(2), 107-109.

MLA Net, Medical Library Association Continuing Education Clearinghouse. (2004). Face to face: Strategies for effective consumer health communication [Course summary]. Retrieved August 24, 2004, from http://www.mlanet.org/education/cech/index.php3?mode=cdisplay&id=297.

National Network of Libraries of Medicine. (2003). HealthInfoquest. Retrieved August 24, 2004, from http://nnlm.gov/healthinfoquest/.

National Network of Libraries of Medicine. (2004). Public libraries and community partners: Working together to provide health information. Retrieved August 24, 2004, from http://nnlm.gov/libinfo/community/.

Nebraska Library Commission. (1994-2004). Statewide training for accurate reference (STAR) reference manual. Retrieved August 24, 2004, from http://www.nlc.state.ne.us/ref/star/contents.html.

Parent Focus Group. (2003, May 22). Unpublished transcript A generic term for any kind of copy, particularly an official or certified representation of the record of what took place in a court during a trial or other legal proceeding.

A transcript of record
. Children's Hospital & Regional Medical Center, Seattle.

Patrick, K., & Koss, S. (1995). Consumer health information "white paper" [Draft]. Consumer Health Education Subgroup sub·group  
n.
1. A distinct group within a group; a subdivision of a group.

2. A subordinate group.

3. Mathematics A group that is a subset of a group.

tr.v.
. Committee on Applications and Technology. Information Infrastructure Task Force.

Ross, C. S., Nilsen, K., & Dewdney, P. (2002). Conducting the reference interview." A how-to-do-it manual for librarians (No. 117). New York New York, state, United States
New York, Middle Atlantic state of the United States. It is bordered by Vermont, Massachusetts, Connecticut, and the Atlantic Ocean (E), New Jersey and Pennsylvania (S), Lakes Erie and Ontario and the Canadian province of
: Neal-Schuman.

Slater, J. (2003, December 3). Life on the waiting list: Reflections on navel removal, importance of organ donation Organ donation is the removal of the tissues of the human body from a person who has recently died, or from a living donor, for the purpose of transplanting or grafting them into other persons. . Seattle Times, pp. F1, F3.

Tu, H. T., & Hargraves, J. L. (2003). Seeking health care information: Most consumers still on the sidelines (Issue Brief No. 61). Washington, DC: Center for Studying Health System Change The Center for Studying Health System Change (HSC) is a nonprofit, nonpartisan policy research organization located in Washington, D.C. HSC designs and conducts studies focused on the U.S. . Available online at http://www.hschange.org/CONTENT/537/.

University of Nebraska Medical Center, McGooghan Library of Medicine Reference Department. (2002). The librarian is in: Facing modern consumer health issues in the public library [Video tape]. Omaha, NE: McGooghan Library of Medicine.

Wood, E B., Lyon, B.J., Schell, M. B., Kitendaugh, E, Cid, V., & Siegel, E. (2000). Public library consumer health information pilot project: Results of a National Library of Medicine evaluation. Bulletin of the Medical Library Association, 88(4), 314-322.

Gail Kouame, Consumer Health Coordinator, National Network of Libraries of Medicine, Pacific Northwest Region
This article is about the region in Pennsylvania. For the area of the United States of America, see Pacific Northwest.


The Northwest Region
, University of Washington, Box 357155, Seattle, WA 98195, Margo Harris, Health Educator, Center for Children with Special Needs, Children's Hospital and Regional Medical Center, P.O. Box 50020, MS S-219, Seattle, WA 98145, Susan Murray Susan Murray BJ (born c. 1952) is a political communications director and formerly a Canadian broadcast journalist. She graduated with a Bachelor of Journalism degree from Carleton University in 1977. Her home community is Kitchener, Ontario. , AHIP AHIP America’s Health Insurance Plans
AHIP Army Helicopter Improvement Program
AHIP Academy of Health Information Professionals
AHIP Association of Hearing Instrument Practitioners (Ontario, Canada)
AHIP ARPANET Host-IMP Protocol
, Consumer Health Information Service, Toronto Reference Library, 789 Yonge Street, Toronto, ON M4W M4W Men for Women (Men Seeking Women)  2G8, Canada
COPYRIGHT 2005 University of Illinois at Urbana-Champaign
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 2005, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Publication:Library Trends
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Date:Jan 1, 2005
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