Access to electronic health information for the public: analysis of fifty-three funded projects

Library Trends, Wntr, 2005 by Angela B. Ruffin, Keith Cogdill, Lalitha Kutty, Michelle Hudson-Ochillo

ABSTRACT

IN 2000 THE NATIONAL LIBRARY OF MEDICINE (NLM), a component of the National Institutes of Health, funded fifty-three consumer health outreach projects through the National Network of Libraries of Medicine (NN/LM). The goal of all projects was to improve access to electronic health information for consumers. Drawing on experience gained in the NN/LM public library pilot projects undertaken in 1998-1999, the projects involved medical and public libraries in partnership with a wide range of community organizations, including public health departments, schools, churches, and local professional associations. The projects provided training in the use of MedlinePlus and other health information resources and support for Internet access in a variety of settings. The projects used an array of approaches over an eighteen-month funding period. This article presents descriptive information about the projects, highlights common barriers, and provides an analysis of the effectiveness of methods and approaches used.

INTRODUCTION

There has been considerable research on the nature of consumer health information (CHI) and the frequency of needs for it. Reflecting on this research, Deering and Harris (1996) note that CHI encompasses patient information, which includes medical instructions and decision support information, as well as health education, self-care information, "quality-in-care information," and alternative medicine. Reviewing previous studies of the demand for CHI, Deering and Harris conclude that CHI requests account for a substantial portion of reference questions raised in public libraries. They suggest that as many as fifty-two million health-related requests are raised in public libraries every year.

Since Deering and Harris's review much attention has focused on CHI available from Internet-based resources. Based on a survey conducted in 2001, Harris Interactive (Taylor, 2001) estimates that 100 million adults in the United States consult online sources for health information. This figure represents three-quarters of adults who use online resources and approximately 47 percent of adults in the United States. Among adults who seek health information online, the average frequency is slightly more than three times per month.

Pifalo, Hollander, Henderson, DeSalvo, and Gill (1997) studied the impact of a CHI service on individuals. Surveying users of a CHI service provided by the Delaware Academy of Medicine, Pifalo and her colleagues found cognitive, affective, and behavioral impacts. The majority of respondents (94 percent) reported that they learned more about an illness or health issue. Slightly more than half (52.1 percent) reported that the information reduced anxiety. Approximately half (51.3 percent) indicated that the information led them to address questions to their health care providers.

Information about the motivations associated with seeking CHI online emerged from a random survey conducted in 2003 of users of MedlinePlus, a leading Web-based source of consumer health information. Results of this survey indicate that the most common reason for visiting the site was to find information on a specific condition (62 percent). The next most common reason for visiting MedlinePlus, to find information about a specific medication, was selected by 29 percent of survey respondents (Backus, 2003).

Libraries have developed a wide array of CHI resources, collections, and services, but Rees (1982) summarizes the essential role of libraries as coordinators of access to health information: "The role of the library has begun to emerge with some clarity. Increasingly, the library (public and hospital) is called on to coordinate health information access at a local level, utilizing the many information and educational resources available locally, regionally, and nationally" (pp. 37-38).

Interest in coordinated access to health information is evident in the collaborations of the earliest libraries in the United States. In a study of health-related collections in public libraries, Wannarka (1968) reports that Boston Public Library held the earliest such collection. Primarily the result of physicians' gifts, this collection totaled 28,604 volumes in 1864, exceeding the Boston Medical Library's collection of 20,285. In 1904 Boston Public Library transferred 21,000 volumes to the Boston Medical Library, which merged with Harvard s Medical Library in 1965 to form the Francis A. Countway Library of Medicine. Wannarka notes that the 21,000 volumes originally transferred in 1904 remain the property of Boston Public Library.

A series of papers presented fifty years ago at the annual meeting of the Medical Library Association explored issues emerging from CHI services provided by health sciences libraries. Later published in the Bulletin of the Medical Library Association, these papers consider policies related to collection access for members of the general public as well as opportunities for collaborations with public libraries. Representing the Armed Forces Medical Library, Jacqueline Chambers (1955) notes that "It is important that public and medical libraries cooperate with one another wherever this is feasible, and it is to their mutual advantage to divide the responsibilities which should be met" (p. 260).