A disease once spoken about in hushed tones and whispers—library voices, if you will—in the early 1980s became the centerpiece of a groundbreaking outreach effort at the National Library of Medicine in 1994.
As the Library announces this year’s funded projects, we look at how NLM’s AIDS Community Information Outreach Program (ACIOP) has improved information access for the HIV/AIDS community and how the AIDS information landscape has changed during the program’s lifespan.
Remembering a terrifying time
The story of the AIDS virus began on June 5, 1981, when the US Centers for Disease Control and Prevention (CDC) published a report describing cases of a rare lung infection in five young, previously healthy, gay men in Los Angeles. All had other unusual infections as well, indicating their immune systems were not working; two had already died by the time the report was published.
By year’s end, there was a total of 270 reported cases of severe immune deficiency among gay men, and 121 of those individuals had died.
Public and private organizations were eager to get to the bottom of this burgeoning public health crisis. In April 1982, Congress held its first hearing on the virus in Hollywood, California. In September 1982, the CDC used the term “AIDS” (Acquired Immune Deficiency Syndrome) for the first time and released the first case definition of AIDS: “a disease at least moderately predictive of a defect in cell-mediated immunity, occurring in a person with no known case for diminished resistance to that disease.”
That same month, Congress allocated $5 million to the CDC for surveillance and $10 million to the National Institutes of Health for AIDS research.
Cracking the code on HIV/AIDS information needs
Even as understanding of the AIDS virus grew, its toll was increasingly bleak. In 1992, AIDS became the number one cause of death for US men ages 25 to 44.
“The NIH AIDS Information Conference in June 1993 was a big deal,” recalled Gale Dutcher, recent acting director of the NLM Specialized Information Services Division, which helped organize the event. “It was held at NLM and included major constituencies who needed information about HIV/AIDS—clinical researchers; health providers; social workers, case managers and others helping patients; community-based organizations; and the news media and the general public.”
“It was a very focused group,” Dutcher continued. “We gave them various scenarios and worked with participants to figure out what information services they really needed to do their jobs.”
Accessing info in the pre-Internet days
“We found out quickly that people on the front lines wanted NLM’s AIDS information resources,” said Dutcher. “But in 1993, even though there were computers and Internet, community organizations simply couldn’t afford the equipment or the subscriptions to the telecom services or training on how to use the information resources. We had no idea how we were going to do it.”
In 1994, under Dutcher’s guidance, NLM issued a request for proposals to fund AIDS community information outreach projects. Among other things, it would support equipment like personal computers, plus connectivity, training, and access to printed materials, such as journals and books.
“The CDC National AIDS Clearinghouse had a telephone service that responded to queries from those working with the AIDS community,” Dutcher explained. “They also maintained a mailing list that we were able to use to reach out to community organizations.”
NLM’s AIDS outreach program grows
Out of an interesting collection of proposals, which included puppet shows and theater pieces, the National Library of Medicine funded its inaugural class of AIDS Community Information Outreach Projects, 19 in all, in 1994. Awardees included community-based organizations, public libraries, health science libraries, health care organizations, academic institutions, and correctional facilities.
Working with community-based groups was a new experience for Dutcher and for NLM. “These groups were really in the trenches, reaching out to AIDS patients and their friends and families,” she said. “We wanted to arm them with information and link them to the National Network of Libraries of Medicine, so they had good local contacts.”
Since those early days, the NLM Specialized Information Services Division has done qualitative analysis of the program and its impact. Because most community organizations have the expertise needed to provide access and information in meaningful (and trusted) ways, having them involved has been very key. And HIV/AIDS information access has been improved via the organizations funded through this program. In addition, interdisciplinary partnerships encourage sustainability of projects, expansion of and to HIV/AIDS resources, and skill sharing among groups, which can in turn lead to developing new and improved outreach methods.
NLM research shows there is a continuing need for funding and training of community organizations, so they can meet the needs of their clients and those in the HIV/AIDS community.
New community outreach—next year
On September 27, 2016, NLM announced funding for eight HIV/AIDS Community Information Outreach Projects. This program provides support to design local programs for improving information access for HIV/AIDS patients and the affected community, as well as their caregivers. The projects are funded for one year.
Here’s a look at the eight projects:
Black Girl Health
“Pop the Question”
This project is designed to increase the knowledge of HIV/AIDS by using social media to connect Black and Hispanic women to NLM online resources and to testing services offered by a local health clinic.
Comunidades Unidas / Communities United
Salt Lake County, UT
“Community Outreach Project to Increase Access to HIV/AIDS Health Information”
The goal of this project is to bolster accessibility of HIV/AIDS-related health information and resources among the Latino population of Salt Lake County through training and social media and in-person outreach.
“HIV/AIDS Basics e-Learning and Assessment Project”
An interactive e-learning and assessment module will cover such topics as HIV/AIDS, HIV prevention, HIV treatment, opportunistic infections, and HIV and specific populations.
El Centro de Educacion de Trabajadores
New York City and Nassau County, NY
“Interactive Spanish Language Educational Modules”
This project will create and post to a dedicated website four online, interactive Spanish-language educational modules.
Norfolk State University
Hampton Roads, VA
Project CHOICE will develop iBooks that provide culturally relevant, interactive health information and innovative access to NLM resources to meet the health information needs of African-American young adults related to HIV/AIDS.
Proactive Community Services
Cook County, IL
This project will use NLM resources to create an HIV/AIDS health information curriculum for the participants in a Chicago State University STEP UP healthcare pathways program targeting low-income African-Americans.
“HIV/AIDS Community Information Outreach Project”
YI Advisors will partner with The Grassroot Project to develop and implement an interactive social media campaign that provides the latest information from NLM resources on the HIV/AIDS epidemic to a wide audience.
Youth Technology Health (YTH)
San Francisco County, CA
This project is a user-centered, design-based mobile application to reduce health disparities faced by transgender youth and young adults, 16-28 years old.
NLM AIDS Community Information Outreach Program (NLM SIS)
A Timeline of HIV/AIDS (AIDS.gov)
By Melanie Modlin, NLM in Focus writer