Watch your language.

ABSTRACT

The Pacific Southwest Regional Medical Library of the National Network of Libraries of Medicine (NN/LM) hosted a one-day educational symposium entitled "Stake Your Claim to Health Literacy" in January 2004. The symposium focused on the practical knowledge and tools needed to participate in health literacy initiatives within the health care and health information environments. It provided a unique opportunity for the participants--medical librarians, public librarians, health care interpreters, and health educators--to hear from experts and to learn about potential health literacy partners. The event, cosponsored by three regional chapters of the Medical Library Association, preceded their joint meeting in Sacramento, California. An advisory group of library and literacy professionals from the NN/LM Pacific Northwest and Pacific Southwest Regions, along with a second-year National Library of Medicine associate fellow, planned, implemented, and evaluated the symposium.

INTRODUCTION

In January 2004 the Pacific Southwest Regional Medical Library of the National Network of Libraries of Medicine (NN/LM) hosted a one-day educational symposium entitled "Stake Your Claim to Health Literacy." The symposium focused on the practical knowledge and tools needed to participate in health literacy initiatives within the health care and health information environments. It provided a unique opportunity for the participants--medical librarians, public librarians, health care interpreters, and health educators--to hear from experts and to learn about potential health literacy partners. This article provides an overview of developments in health literacy over the past few decades and discusses the symposium, from planning to evaluation.

OVERVIEW OF HEALTH LITERACY

Language is defined as "the method of human communication, either spoken or written, consisting of the use of words in an agreed way; a professional or specialized vocabulary" (Abate, 1998, p. 456). For many years public librarians and adult educators have been involved in the written aspect of communication (that is, the ability to read and write) through various literacy programs. More recently, health professionals have become aware of the work of adult educators and have begun working with them to enhance the public's health literacy and to develop readable health information resources. In 2003 the medical library community began to take steps to define its role in lowering the barriers of language and culture for those trying to access health information.

The term health literacy was first used in 1974 (Simonds, 1974), and links between illiteracy and health were subsequently noted in articles written in the decades that followed. According to Rima Rudd, a Harvard researcher and principal investigator for the National Center for the Study of Adult Learning and Literacy (NCSALL), "Dozens of articles in the 1980s and scores of articles in the early 1990s offered evidence that written documents in the health field were very demanding and were often assessed at reading levels beyond high school" (NCSALL, 2002). But with several key publications health literacy began to garner national attention. The U.S. Department of Health and Human Services (HHS) Centers for Disease Control and Prevention published Literacy and Health in the United States in 1991, stressing the importance of literacy to health. In 1993 findings from the National Adult Literacy Survey (NALS) were published, indicating that half of the U.S. adult population, representing approximately 90 million adults, has limited literacy skills. The NALS measured functional literacy, defined as "an individual's ability to read, write and speak in English, and compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one's goals, and to develop one's knowledge and potential" (Kirsch, Jungeblut, Jenkins, & Kolstad, 1993, p. 3). In 2000 the U.S. Department of Health and Human Services launched Healthy People 2010, a set of health objectives for the nation to achieve over the first decade of the new century (U.S. Department of Health and Human Services, 2000). For the first time a health communication focus area was included in the specific objective to "Improve the health literacy of persons with inadequate or marginal literacy skills" (U.S. Department of Health and Human Services, 2000). Healthy People 2010 built on the definition of functional literacy by relating it to health tasks. It defined health literacy as, "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions" (U.S. Department of Health and Human Services, 2000).

In that same year, 2000, it is notable that the National Library of Medicine published "Health Literacy" in its Current Bibliographies in Medicine (CBM) series (National Library of Medicine, 2000). Since the mid-1990s Pfizer, a U.S. pharmaceutical company, has been committed to raising awareness of the health literacy issue and developing solutions for addressing this public health problem. Pfizer has defined health literacy as "the ability to read, understand, and act on health information" (Pfizer, 2004). In 1998 the American Medical Association (AMA) "became the first national medical organization to adopt a policy recognizing that limited patient literacy affects medical diagnosis and treatment. The AMA Foundation has since been working to raise awareness of health literacy within the health care community" (AMA Foundation, n.d.). Finally, in 2003 the Medical Library Association (MLA) formed a Health Information Literacy Task Force to formulate an organizational response to health literacy (MLA Net, 2003a).

THE SYMPOSIUM

As a result of growing interest and initiatives, the Pacific Southwest Regional Medical Library sponsored a day-long regional symposium, which focused on language and cultural access to health information and provided an overview of health literacy research and key initiatives. The goals for the symposium were to build on the foundation provided by the September 2003 MLA satellite teleconference, Reading Between the Lines: Focusing on Health Information Literacy--to provide participants with practical tools and skills and to help them identify specific actions they could take in support of clear communication and improving access to resources that are linguistically and culturally appropriate (MLA Net, 2003b). Participants learned how organizations and individuals are responding to the need for health literacy initiatives and how they could respond to the need for increased language access, improved readability, and easy to read resources in health information. The specific objectives of the symposium were

* Distinguish between health literacy and health information literacy

* Learn how MLA and NLM are responding to health literacy needs

* View the context of health literacy from a variety of perspectives

* Be able to select appropriate materials to support health literacy

* Identify potential partners/actions

The morning session of the symposium featured speakers from the Medical Library Association, the National Library of Medicine, and the University of California, San Francisco. Neil Rambo, then associate director of the NN/LM Pacific Northwest Region and chair of the Health Information Literacy Task Force of the Medical Library Association, opened the morning session with his address, "Putting the Information into Health Literacy." He highlighted key activities of the task force, which include defining the medical librarian's role in health literacy, developing a communication/advocacy kit, and promoting partnerships with other organizations involved in health literacy initiatives. More information about the task force and its activities can be found at http://www.mlanet.org/resources/healthlit/index.html.

Joyce Backus from the National Library of Medicine followed Neil Rambo with her presentation on NLM's efforts to identify and make available easy to read health information pages on MedlinePlus and NIHSeniorHealth (http://nihseniorhealth.gov) Web sites. MedlinePlus also offers interactive tutorials in English and Spanish in addition to the low-literacy written materials. More information about these resources can be found at http://www.medlineplus.gov.

The keynote address was delivered by Dean Schillinger, M.D. An associate professor of medicine at the University of California, San Francisco (UCSF), Dr. Schillinger has been heavily involved in research on clear health communication. He presented results of investigations performed at UCSF dealing with patient-provider communication. His research suggests that, despite efforts to improve communication and reduce the use of medical jargon, effective communication between physicians and their patients is still lacking. He referenced recent findings from a pilot study of the California Literacy Initiative. According to the report of key findings, "The study found that low literate adults in California are marginalized by the health care system because the process of obtaining health care requires specialized knowledge that only highly literate individuals can easily and consistently access" (Low Literacy, High Risk, n.d.). Dr. Schillinger concluded his address by outlining educational, practical, and policy imperatives.

The morning panel and afternoon breakout sessions delivered practical knowledge and tools in health literacy. Audrey Riffenburgh, a nationally recognized specialist in health literacy and plain language, addressed features and limitations of formulas for assessing the readability of health information and taught participants how to use the Simplified Measure of Gobbledygoop (SMOG) readability formula to analyze reading levels by hand. Beth Wescott, a medical librarian who has been working in the area of health literacy since the early 1990s, spoke about laws, regulations, and cost ramifications concerning low health literacy, focusing on the area of informed consent. Christine Wilson Owens, an anthropologist who manages small grant projects for the ethnic medicine Web site, EthnoMed (http:// ethnomed.org), addressed audience, standards, practices, and guidelines for translated and culturally appropriate materials. Sabrina Kurtz-Rossi, a health educator and director of the LINCS Health & Literacy Special Collection (LINCS, 2004), highlighted nonprint resources that are available to low-literate adults. The symposium concluded with "elevator talks" from the various exhibitors in attendance. The exhibitors represented California Healthcare Foundation, California Healthcare Interpreters Association, California Literacy, EPA Associates, Institute for Healthcare Advancement, and Kaiser Permanente.

THE PLANNING PROCESS

Planning for the symposium began in January of 2003 with a fact-finding trip to Vision Literacy (Vision Literacy, n.d.), an organization that provides innovative literacy services for adults in Santa Clara County, located in northern California. Vision Literacy began in 1985 as the Reading Program, targeting adults in the county who were having difficulties with reading, writing, and basic math skills. The program was an early member of the State Library's California Literacy Campaign. What makes Vision Literacy unique is its health literacy program, which operates out of two Community Learning Centers (CLCs) in the county in a partnership between Vision Literacy, PlaneTree Health Library (PlaneTree, 2004), and Santa Clara Valley Medical Center. These centers provide access to free health information and adult literacy services and also provide health information resources to the general public.

Through meetings with executive director Pat Lawson-North and her staff; with Candace Ford, the health librarian at PlaneTree; and with literacy tutors and learners, a clearer understanding emerged of the problem of health literacy and of the strengths of this kind of partnership in addressing it. A symposium targeting the medical library community seemed like the ideal way to not only raise awareness of health literacy but also to get potential partners together to network.

Discussions with the 2004 joint meeting planning committee followed the visit to Vision Literacy. Three Medical Library Association chapters--Northern California and Nevada Medical Library Group, Medical Library Group of Southern California and Arizona, and the Pacific Northwest Chapter--would be represented at the 2004 joint meeting in Sacramento. Holding a one-day symposium in conjunction with this meeting would take advantage of the gathering of medical librarians from Alaska, Arizona, California, Idaho, Montana, Nevada, Oregon, and Washington. The proposal was well-received and planning got underway. An advisory group of library and literacy professionals from the NN/LM Pacific Northwest and Pacific Southwest Regions was formed. The Symposium Advisory Group met in August 2003 at the University of California at Los Angeles (UCLA) Biomedical Library to plan the one-day event. Members of the group included Marilyn Hall, Health Sciences/Reference Librarian at San Diego State University; Florence Jakus, Health Sciences Librarian at Las Vegas Clark County Library District; Dolores Judkins, head of Research & Reference Services at Oregon Health & Science University Library; Gail Kouame, Consumer Health Information Coordinator of the NN/LM Pacific North west Region; Pat Lawson-North, executive director of Friends of Vision Literacy; and Heidi Thiessen Sandstrom, interim associate director of the NN/LM Pacific Southwest Region (and chair of the group). The advisory group meeting was also attended by Beverly Treumann, president of the California Healthcare Interpreters Association, who provided an overview of the profession and relevant legislation and standards as well as insight into the information needs of health care interpreters. The group was later joined by Natalie Kamper, a second-year National Library of Medicine Associate fellow, who assisted with the symposium.

OUTCOME

The symposium was attended by over 100 participants and included medical librarians, public librarians, health care interpreters, and health educators. Post-symposium survey respondents gave the symposium extremely high marks for meeting its objectives, for the instructional resources used, and for the symposium content. No respondent graded the day-long event below an "A." In addition to providing context and practical tools for communication and resource selection, participants were able to network with potential partners from other professions who shared a common goal of promoting health literacy. The medical librarians present were interested in the response of their professional association, the Medical Library Association, to health literacy. The speaker from the National Library of Medicine received feedback from participants about establishing standards for easy to read materials on the MedlinePlus consumer health information Web site, and NLM now plans to create a Web page to tell organizations how to make their sites easy to read and how to label their materials so that MedlinePlus selectors know that their materials are easy to read. Finally, participants were encouraged to take steps to foster health literacy in their communities, including raising awareness and knowledge among those delivering health information in parent organizations; showing how to find easy-to-read health information resources in library collections and on the Internet (MedlinePlus.gov is a good place to start); distributing materials to staff, patients, and members of the public that promote clear communication; and conducting an event with a literacy partner in the community.

REFERENCES

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American Medical Association (AMA) Foundation. (n.d.). Health literacy. Retrieved June 25, 2004, from http://www.ama-assn.org/ama/pub/category/8577.html.

Centers for Disease Control and Prevention, Center for Chronic Disease Prevention and Health Promotion. (1991). Literacy and health in the United States: Selected annotations. Atlanta: CDC.

Kirsch, I., Jungeblut, A., Jenkins, L., & Kolstad, A. (1993). Adult literacy in America: A first look at the results of the National Adult Literacy Survey. (2nd ed.). Washington, DC: Office of Educational Research and Improvement.

LINCS health and literacy special collection. (2004). Retrieved June 25, 2004, from http://www. worlded.org/us/health/lincs.

Low literacy, high risk: The hidden challenge facing health care in California. Results from a pilot study of the California Health Literacy Initiative. (n.d.). Retrieved June 25, 2004, from http://www. cahealthliteracy.org/pdffiles/allfourpageshealthlitreport_2.pdf.

MLA Net. (2003a). MLA Health Information Literacy Task Force, 2003-2005. Retrieved June 25, 2004, from http://www.mlanet.org/resources/healthlit/tfhil_info.html.

MLA Net. (2003b). Reading between the lines: Focusing on health information literacy. Retrieved June 25, 2004, from http://www.mlanet.org/education/telecon/healthlit/index.html.

National Center for the Study of Adult Learning and Literacy (NCSALL). (2002). "A maturing partnership." In Focus on basics. Boston, MA: National Center for the Study of Adult Learning and Literacy.

National Library of Medicine (NLM). (2000). Current bibliographies in medicine 2000-1: Health literacy. Retrieved June 25, 2004, from http://www.nlm.nih.gov/pubs/cbm/hliteracy. html.

Pfizer. (2004). Community health: Health literacy. Retrieved June 25, 2004, from http://www. pfizerhealthliteracy.com/whatis.html.

PlaneTree Health Library. (2004). Retrieved June 25, 2004, from http://planetreesanjose.org.

Simonds, S. K. (1974). Health education as social policy. Health Education Monograph, 2, 1-25.

U.S. Department of Health and Human Services. (2000). Healthy people 2010: Understanding and improving health. 2nd ed. Washington, DC: U.S. Government Printing Office.

Vision Literacy. (n.d.). Retrieved June 25, 2004, from http://www.visionliteracy.org/index. html.

Heidi T. Sandstrom, Interim Associate Director, Pacific Southwest Regional Medical Library, University of California at Los Angeles, Louise M. Darling Biomedical Library, 12-077 CHS/ Box 951798, Los Angeles, CA 90095-1798