Meeting the health information needs of diverse populations.

ABSTRACT

Meeting the health information needs of diverse communities is a challenge for librarians. Libraries of many types have a duty to identify and maintain contact with constituents having a variety of health information needs. Assessing community needs includes identifying specific population groups, the languages that they speak, the health issues affecting their lives, and their preferred methods of obtaining information. Locating, acquiring, and disseminating materials that address relevant health issues in an accessible manner takes commitment, funding, and a variety of collection development techniques. Library efforts have improved access to health information for diverse communities, but significant barriers to accessing health information remain. Reaching communities effectively includes community outreach via programming and partnering with community-based organizations and local health care agencies. By assisting information creators and health care providers in understanding how materials are being used and what materials need to be developed, library staff can play an important role in promoting the development of culturally and linguistically appropriate health information.

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Libraries worldwide are dedicated to meeting the information needs of the populations they serve. Meeting the health information needs of diverse populations is challenging for many reasons. Individual health information is intrinsically intimate and personal, time frames may be short, and there may be many different "answers" to the question being expressed. Libraries of many types have a duty to identify and maintain contact with constituents having a variety of health information needs. Once information needs that impact the community's health are identified, relevant information can be located and made available. Library efforts have improved access to health information for diverse communities, but significant barriers to accessing health information still need to be addressed. Library staff can play an important role in assisting information creators and health care providers to understand how materials are being used and what materials need to be developed.

IDENTIFYING AND DEFINING COMMUNITIES

Public and academic institutions define and reach out to their communities in many ways. Depending on the situation, the library may or may not already be viewed as part of the user community's resources. What does it take to demonstrate a commitment to stowing diverse populations? Is there a palette of collections and services that must be offered, or is it in the eye of the beholder that the community decides whether the library is committed to fulfilling its needs?

In order to identify the communities, they first need to be defined. It is interesting to compare the institutional definition with how the community defines itself. There are many characteristics according to which a community can be defined:

* Language

* Geography

* Race

* Ethnicity

* Age

* Sexual orientation

* Faith

* Other characteristic(s)

Language information can be gathered in a variety of ways. First, note the languages that library patrons and neighborhood residents speak. Are people or organizations asking for books or other materials in specific languages? Which language do people list as their primary language on their library card application? If the library does not track this information, there are other ways to learn about the population. Look at the census data for the city or county. Go to www.census.gov and use the American Fact Finder to get maps and statistics. Information concerning the language spoken at home, ability to speak English, and nativity and citizenship for residents is available in tables. Data from local school districts about the number of students with limited English and their primary languages may also be available via local or state Web sites.

Geographic characteristics can be fairly broad or very narrow. Areas circumscribed by political boundaries such as counties, congressional districts, and census tracts are easier to define but may not be meaningful to residents. In New York City, for example, much of the data is presented by United Hospital Fund zip code aggregations. These do not necessarily correspond to neighborhoods as defined by those who live there. As many health disparities are described as taking place in socioeconomic clusters, the type of housing in which people live also creates a community. The health concerns of those living in a housing project are different than those living in a single-family brownstone in the same zip code. The information needs of the homeless also need to be addressed.

Health status by race has been described intensively in the literature on health disparities. Many large data sources collect data by race but not by ethnicity, country of origin, or language spoken. As a result, racial categories are used as a proxy for other things. The multiracial nature of many communities also makes profiling by race less specific or applicable.

Ethnicity is often combined with race in the literature. In the census the choice of Hispanic or non-Hispanic is the main ethnicity indicator. Within the Hispanic (Latino) ethnicity, a wide diversity of culture, experience, and dialect is embraced. Geography is also an important component; the experience of immigrant groups may be very different depending on the area into which they immigrated--the east or west coasts or the south.

Age is a somewhat visually identifiable characteristic. However, age in itself does not imply a certain set of health information needs. An elderly grandmother taking on the primary parenting role in her family will have different health information needs than a never-married frequent traveler of the same age. Physical aspects of aging may require attention to material formats, such as the need for audiovisuals or large print type.

Sexual orientation is another characteristic according to which communities are formed. For example, in New York City the Michael Callen-Audre Lorde Community Health Center brings together lesbians, gays, bisexual, and transgendered (LGBT) individuals from a variety of geographic, racial, ethnic, age, and faith groups around a menu of health services regardless of ability to pay. It is often difficult to find health information materials that are evidence-based but sensitive to the concerns of individuals with diverse sexual orientations. The Gay and Lesbian Medical Association (2001) recently released the first comprehensive document on the state of LGBT health.

Faith-based communities are a relativity recent focus area of health education. Many religious organizations have historically provided parish nurses, but the place of worship is now being further developed as a trusted source of health information and planned health activities. A survey by Hale and Bennett (2003) of clergy found that 72 percent said it was "very important" and 28 percent said it was "somewhat important" to actively address the health needs of their congregations. Some faith-based organizations may not be willing or able to provide information that goes against the tenets of their religion. Awareness of these issues is essential in providing appropriate materials for faith-based health fairs and other events.

Once the communities to be served by the library have been defined, there are many ways to get to know the needs of the various communities better.

OUTREACH TO COMMUNITIES

Ben Ocon and REFORMA offer several ways to get to know a Latino community on the Utah State Library Division Web site (Ocon, 2003). Studying the demographic statistics of your service area is the method most often employed by libraries. However, the time it takes to compile and distribute these statistics may mean that they are not accurate if your community is mobile. The local school district's statistical profile of student enrollment may be a more timely resource, but it will not capture information on community members not tied to schools. Community leaders, particularly religious leaders, elected officials, and parent organizations may have their fingers on the pulse of the community, especially those members who are supportive of their organizations. Patronizing local businesses also may provide an idea of what health activities and products are available and what information or programming might be needed.

Getting in touch with the communities in order to assess information needs is absolutely essential. In addition to keeping track of reference desk inquiries, contacting local ethnic organizations and newspapers, churches, and community groups can lead to opportunities for collection building and outreach. Ideas promoted by Alire and Archibeque (1998) include attending meetings and community fairs, writing articles for local newsletters, and creating flyers to distribute at community centers and local businesses. If there are no bilingual staff members at the library, work with members of the community to identify information needs and create materials. Contact local hospitals, clinics, and health care agencies to learn about the health needs of the neighborhoods they serve. Make an effort to obtain books, pamphlets, and videos about the most common illnesses and health issues faced by the library's community.

Although using cultural profiles may be negatively perceived as a step toward stereotyping, reading cultural health profiles of a group may be a first step toward understanding its history and information needs. Reading a cultural profile that includes languages spoken, rate of literacy (spoken and written) in the language, primary health concerns based on epidemiology and public perspective, and birth and death practices may help staff prepare to provide better services. Knowing these things about the population in general does not mean they apply to any one of the library's customers, but it can be a starting point for shared understanding.

One key point of cultural profiles that is not typically mentioned in country profiles, such as the Central Intelligence Agency's World Factbook, or health profiles is the relationship of communities to libraries in a resident's country of origin. If the libraries in the country are closed-stack research libraries open only to researchers, for example, a consumer may have no idea that they are welcome to borrow without cost the public library's videos from an open shelf.

Anticipating needs and migration patterns is a key part of staying in touch. A library system might be able to reallocate resources in a particular language to a new branch as consumers change neighborhoods, while a single library might need to wait for a community to prove that it is established in order to justify an expenditure on materials. The efforts made to reach out to a community can be maintained as a community migrates within a library system's catchment area. This is a dynamic, ongoing process as populations shift.

IDENTIFYING INFORMATION NEEDS THAT IMPACT HEALTH

The definition of health must be broad. Though many libraries have health and science materials located in the same place, many relevant materials may also appear in other parts of the collection. Key areas of relevancy for total well-being include education, employment and health insurance access, child care, and domestic violence. Immigration and refugee issues are covered in Margaret Allen, Suzanne Matthew, and Mary Jo Boland's article in this issue, "Working with Immigrant and Refugee Populations: Issues and Hmong Case Study."

Community opinion leaders can assist the library in identifying key areas for collection development. Strategies for identifying and collaborating with opinion leaders can be as diverse as the populations for which you are developing resources. For example, a number of strategies could be used to identify someone who could assist in identifying information needs of the following groups:

* African American middle-aged men

* Muslim women with children

* Hasidic Jewish elderly men

* Young Latino men who have sex with men, but who do not identify as gay

* White teenage bois (young gay women)

Sometimes working through community leaders or organizations is the only way to get the message out. For example, the New York City Department of Health and Mental Hygiene asked Alianza Dominicana, Inc., a community-based organization (CBO) in Washington Heights, to reach out to the community with a message about the dangers of a remedy called litargirio (New York City Department of Health and Mental Hygiene, 2003). The message had already been distributed through traditional news media, but the person-to-person touch was also needed. Hubbell and Dearing (2003) note that the politics of resource distribution is more newsworthy to local journalists than topics like access to health information and service provision.

Most libraries aim to be as attractive and all-inclusive as possible; segregating potential audiences is not a goal. However, the efforts to attract one group might be off-putting to another group. This is not a new problem specific to serving diverse communities; it can occur wherever there are differences of opinion on appropriate subject matter. For example, materials on harm reduction techniques to reduce the risk of infections to injection drug users may be very desired by drug users or those that work with them but offensive to others who feel that providing these materials promotes drug use. Balancing the needs and concerns of a library's diverse user population is not an easy task. The library's community representatives and governance may be able to provide some guidance on these difficult issues.

LOCATING AND PROMOTING THE DEVELOPMENT OF RELEVANT INFORMATION.

Locating materials for a library collection can be a challenge. It is relatively easy to find materials in Spanish, but other languages are more difficult. Once you decide to develop a collection in another language, a dedicated budget will be needed to maintain it. A reasonable amount for establishing a collection is $2,000, with $500-$600 per year for additional items. You may need more if the collection is used heavily. Allocating funds for materials among groups can be complicated. The most vocal group or the one with the most materials available in their language may get what they want because it is easier. It is natural that the library wants to guarantee that the materials will be used.

There are a number of ways to locate materials. Imported books are more expensive, and prices fluctuate with the exchange rate. An institutional credit card will be useful for dealing directly with foreign distributors. Although the quality of books published abroad is improving, the paper and bindings are often less durable, so avoid paperbacks if possible and plan for needing to reinforce them.

Distributors specializing in various languages are a good source. They often advertise in library journals and local ethnic newspapers. International book fairs such as the Feria Internacional del Libro in Guadalajara offer large selections and excellent prices. If no one from the library can attend, work with a distributor who can take care of purchasing and shipping. Provide a profile of the library's needs and the amount of money available. Local ethnic bookstores and exhibits at national and state library association meetings are also good sources. It is always better to see the materials before purchasing.

Participants on the electronic discussion list of CaPHIS, the Consumer and Patient Health Information Section of the Medical Library Association, help librarians find appropriate materials. Web sites such as Librarians' Index to the Internet (www.lii.org) and MedlinePlus (http://medlineplus.gov) promote new resources. LEER, the Spanish books in print, is now a fee-based service entitled Libros en Venta. Publishers' catalogs are useful, but prices will vary with the exchange rate. Kit is not possible to see the actual books, reviews are helpful. Booklist has a column devoted to books in a specific language each month covering many topics, but few books on health are listed. Criticas reviews Spanish-language materials on a variety of topics, including health (Alpi, 2002), and Library Journal occasionally covers health topics (Bibel, 2000). A recent article by Hartel and Mehling (2002) discusses building collections and reference services in Spanish; however, it is difficult to find reviews of materials in other languages.

Pamphlets in a variety of languages are available from government and nonprofit agencies. A Web search using the name of the disease or condition and the language desired will usually turn up something. Local organizations are also good sources. Large HMOs serving diverse communities often create in-house materials. Establishing a relationship with local health educators will be mutually beneficial. They can learn about library resources and the library can share their materials with a wider audience.

A medical encyclopedia and a bilingual medical dictionary in the languages used by residents of the community can form the basis of a collection. Pamphlets and videos or DVDs, if they are available, can broaden the range of topics available to those who may not be comfortable with book-length materials. There are also some precedents for health education through television programs and soap operas or telenovelas. Comics or fotonovelas are another popular option. The comic "Decisions," which was unveiled on New York City subways in English and Spanish, outlined the sexual decision-making process of Julio and Marisol.

When choosing materials, start with the same criteria the library uses for English-language resources. Choices will be fewer, but there should be some things that will meet the community's needs. Ideally, the collection should contain materials at a variety of reading levels with current, accurate information. Be careful of translations of English-language sources as they may not be translations of the most recent edition. Check to see whether the translation was reviewed by a medical or scientific expert. Try to obtain culturally sensitive material. Patrons are more apt to read things that relate to their situations. If all of the people in the pictures are blue-eyed blondes, the book may seem irrelevant.

The way that the collection is organized also says something about the intended audience. Many libraries separate items by language and also by subject matter or format. Broad age distinctions such as children or adult and certain geographic breakdowns may also be in place. Observing how collections are used or not used may suggest that reformatting of the space is necessary. Knowing the dissemination of technology in the community is also important. Do people have VCRs or DVD players? Do they listen to cassette tapes or CDs? Do most have Internet access? If not, the library may need to provide video viewing stations, audio stations, or more computers for accessing Web sites. If video viewing workstations are available in the library or another community organization, that information should be shared in the video shelf area. The majority of health-related audiovisuals are still produced in VHS rather than DVD format.

Beyond the physical collection of the library, it is important to be aware of other health information sources in the community. A pre-Internet-era phone survey of Hispanic New Yorkers by O'Malley, Kerner, and Johnson (1999) identified the sources of health information used. Use of the television was cited 21 percent of the time, while radio was cited 8 percent of the time. The use of radio varied greatly among ethnic groups, with the highest among Haitians (20.8 percent) and Colombians (12.5 percent) and lowest among U.S.-born blacks (4.2 percent). Community-based organizations are a major source of information. Note that certain types of organizations may be more attuned to certain types of health outreach. Faith-based communities are often the site of health promotion efforts--screening and management of diabetes, cholesterol, hypertension--but perhaps not so much for risk reduction because of differences between church beliefs and medical practice.

Collections are not enough. There must be a palette of services to bring people to the collection. The community can be invited to help establish resources and services through focus groups, community board representatives, and buying trips to local book and news merchants. Programming and outreach will be more successful if the intended audiences are involved in the planning. Health information sessions for women can be offered at the same time as children's programming to increase the likelihood that women would be able to attend. Health topics also can be selected for mother and child story hours with the goal of educating the parent as well as entertaining the child.

Marketing and outreach should involve as many staff members as possible. It is wonderful to have bilingual library staff reaching out to the community, but one part of sustainability is making sure that multiple staff (as well as administrators, trustees, and friends) are aware of and supportive of these efforts. Staff training on service to diverse populations may help build confidence (Alpi, 2001) Volunteers can also be a wonderful resource, especially if they help promote library services to local media, businesses, religious organizations, and local schools. Displaying the library's brochures at human services providers (hospitals, clinics, day care centers) and community events is another way to reach out. If you do not have many resources in the language of the community, try reaching out to service organizations with bilingual staff that assist those populations or to ESL (English as a Second Language) classes where English-language materials may be shared or translated for non-English speakers.

Staying in touch and explaining changes in collections and services are essential for sustainability. Many communities have experienced interest from organizations during grant funding that dissipates when funding ends. Clear communication and realistic plans keep the relationship sustainable.

CONFRONTING AND OVERCOMING BARRIERS TO ACCESS TO HEALTH INFORMATION

Is the library viewed as a welcoming place or a meeting place for the community? In the case of communities defined by language, translating the library's basic library forms and brochures--registration forms, welcome brochures, loan borrowing privileges, and hours of service--is a key practice. Be aware, however, that efforts to be more inclusive by providing materials in additional languages may also be perceived as exclusive by other language groups. In New York City the government recently mandated that all materials provided by the Human Resources Administration must be available in the following six languages: Spanish, Russian, Chinese, Korean, Haitian-Creole, and Arabic. However, many groups feel excluded by this policy. Although translation of documents is limited to six languages, the city must still provide oral interpreters in all languages (Kugel, 2004). In Oakland, California, library forms are available in English, Spanish, Chinese, and Vietnamese; Korean and Russian will be added soon. In addition, there are requests for materials in Farsi, Hindi, Urdu, and Tamil, as well as Arabic.

One central tenet of library service--respecting the ideals of others--is especially important when working with diverse communities. Reference interviews for women's health information may need to be performed with the man of the family rather than the woman herself, even if she is present. If no trained interpreter service is available, children may be trying to translate for the family, even if the topic is about the child or otherwise inappropriate. These communication challenges will be discussed in this volume by other authors. Signage, appropriate shelving, and tools such as "I speak cards" can help direct literate users to materials in their own languages. Users who are not literate may need to be directed to audiovisual materials or referred to in-person services with interpreters or native speakers. Since it is rare to have actual health services in the same location as the library, having a referral partner is very important. Other articles in this issue will talk about building these networks and partnerships.

FURTHER ROLES FOR INFORMATION CREATORS AND PROVIDERS SERVING DIVERSE POPULATIONS

There are many roles that libraries can play in the development and distribution of materials intended for diverse populations. One role is for librarians to provide feedback on materials to the programs developing the resources on either a formal or informal basis. This could be through a place on the patient education committee at a hospital or a materials review committee of a public health agency. Some characteristics to be considered include: does the item meet the explicit needs of the community; is it culturally appropriate; how often will it need to be updated; does it have the information needed for cataloging such as the English-language version of the title and source, the language of the item, and the last updated date? Many grant-funded organizations are supposed to share the materials that they create or send them through a multidisciplinary material review process. Librarians can play a key role in this process. Inviting health care providers to review materials for accuracy is one way to increase their involvement and acknowledge their expertise. Because CBOs often have limited funds, they may need to partner with libraries to maintain an archive of cataloged materials. CBO pieces are often more attractive to users in terms of cultural relevance, reading level, images, and geographic specificity/local references.

Many groups receive funding to produce culturally relevant materials but then do not have a mechanism to share or extensively distribute those carefully created materials. Libraries can help improve coordination between themselves and other government and nongovernmental groups, but libraries also need to do a better job of integrating and sharing their own projects. Health Information in Chinese Uniting Patients, Physicians and the Public (HICUP); Consumer Health Information for Asians (CHIA); Medinforus: Medical Information in Russian; New York Online Access to Health (NOAH); Selected Patient Information Resources in Asian Languages (SPIRAL); and many international sites are library-based, non-English health information projects with varying levels of patron involvement and use.

Many libraries are not interested in collecting and maintaining pamphlets, posters, or other ephemeral materials. However, these might be a key source for a library's community or individual users. Many hospitals and commercial organizations may not want to distribute anything not produced by the hospital or customized with its logo. Others have materials hidden behind a firewall so that they cannot be accessed by outside users. Some librarians have successfully contacted producers of print materials and convinced them to put them on the Web. Many CBO Web sites do not have enough storage space to do this. The Harm Reduction Coalition offers an online brochure exchange to allow CBOs and other organizations to share materials in a small, focused subject area (Welcome to, n.d.). Asking Web-based information providers about permission to customize, translate, or adapt materials produced in other areas of the country with local information is another possibility for expanding local resources.

Customization may also be valuable for book collections. For example, it may be that the only book in the collection about HIV was published in Spain. Library staff can add value and community relevance to an international publication by including the national 800-number for the Spanish AIDS hotline or a local resource. A list of U.S. names cross-referenced to the Spanish drug names could be added in the front or back of the book. However, some librarians might not be comfortable with adding this level of "content" to an item. There are a range of strategies to improve access to information, but not all will be acceptable or possible for each organization.

Table 1. Cultural Profile Web Sites

Title                Source             URL

Community            Cross Cultural     http://www.xculture.org/
Profiles             Health Care        resource/library/index.cfm
                     Program

Cultural             Queensland         http://www.health.qld.gov.au/
Diversity: A         Health             multicultural/cultdiv/
Guide for Health                        default.asp
Professionals

Culture Specific     EthnoMed           http://ethnomed.org/
Pages

Curriculum in        Collaborative on   http://www.stanford.edu/group/
Ethnogeriatrics      Ethnogeriatric     ethnoger/
and Ethnic           Education
Specific Modules

Provider's Guide     Management         http://erc.msh.org/
to Quality &         Sciences for       mainpage.cfm?file=1.0.htm&
Culture              Health             module=provider&
                                        language=English

Rehabilitation       Center for         http://cirrie.buffalo.edu/
Provider's Guide     International      mseries.html
to Cultures of       Rehabilitation
the Foreign-Born     Research
                     Information and
                     Exchange

Understanding        American           http://www.apha.org/ppp/RED/
the Health           Public Health      index.htm
Culture of Recent    Association
Immigrants to
the United States:
A Cross-Cultural
Maternal Health
Information
Catalog

Table 2. Library or Librarian-Coordinated Multilingual Health
Information Web

Sites

Health Information in         http://library.med.nyu.edu/patient/hicup/
Chinese Uniting Patients,
Physicians and the Public
(HICUP)

Consumer Health               http://hhw.library.tmc.edu/CHIA/
Information for Asians
(CHIA)

MedInfoRus: Medical           http://medinforus.homestead.com/
MedIntoRus.html
Information in Russian

MedlinePlus                   http://medlineplus.gov

New York Online Access to     http://www.noah-health.org/
Health (NOAH)

Selected Patient Information  http://www.library.tufts.edu/hsl/spiral/
Resources in Asian Languages
(SPIRAL)

CONCLUSION

There are many roles that libraries can play in the development and distribution of materials intended for diverse populations, but libraries also confront a number of challenges in doing so. Getting in touch with communities to assess information needs is absolutely essential. Once community contacts are established, staying in touch and explaining developments in collections and services are essential for sustainability. Marketing and outreach should involve as many staff members as possible. Beyond the physical collection of the library, it is important to be aware of other health information sources in the community. These and a number of other steps are crucial for libraries attempting to develop their health information collections for the communities they serve.

REFERENCES

Alire, C., & Archibeque, O. (1998). Serving Latino communities. New York: Neal-Schuman.

Alpi, K. M. (2001). Multicultural health information seeking: Achieving cultural competency in the library. Journal of Hospital Librarianship, 1(2), 51-59.

Alpi, K. M. (2002). Selecting quality medical resources. Criticas, January/February, 29-30.

Bibel, B. M. (2000). Guides for building la familia. Library Journal, 125(14), 171-175.

Gay and Lesbian Medical Association. (2001). Healthy people 2010 companion document for LGBT health. Retrieved June 14, 2004, from http://www.glma.org/policy/hp2010/.

Hale, W. D., & Bennett, R. G. (2003). Addressing health needs of an aging society through medical-religious partnerships: What do clergy and laity think? Gerontologist, 43(6), 925-930.

Hartel, L.J., & Mehling, R. (2002). Consumer health services and collections for Hispanics: An introduction. Medical Reference Services Quarterly, 21(1), 35-52.

Hubbell, A. P., & Dearing, J. W. (2003). Local newspapers, community partnerships, and health improvement projects: Their roles in a comprehensive community initiative. Journal of Community Health, 28(5), 363-376.

Kugel, S. (2004,January 18). The city will speak more tongues, but South Asians are stranded. New York Times.

New York City Department of Health and Mental Hygiene. (2003). City health department warns New Yorkers to avoid buying or using "litargirio" [press release]. Retrieved June 14, 2004, from http://www.nyc.gov/html/doh/html/public/press03/pr151-1105.html.

Ocon, B. (2003). Effective outreach to the Latino community. Retrieved June 14, 2004, from http:// library.utah.gov/latino.html.

O'Malley, A. S., Kerner, J. F., & Johnson, L. (1999). Are we getting the message out to all? Health information sources and ethnicity. American Journal of Preventive Medicine, 17(3), 198-202.

Welcome to the Harm Reduction Coalition Brochure Exchange!!! (n.d.). Retrieved June 14, 2004, from http://www.harmreduction.org/pamphlets/brochure_exchange.html.

Kristine M. Alpi, Library Manager, Public Health Library, New York City Department of Health and Mental Hygiene, 455 First Ave., Rm. 1233, New York, NY 10016; and Barbara M. Bibel, Reference Librarian, Science/Business/Social Science/Government Documents, Oakland Public Library, 125 14th Street, Oakland, CA 94612-4310