HIV/AIDS community information outreach program (ACIOP): A landmark NIH conference and an enduring NLM role in meeting the affected community’s need for information access

1.Introduction

The first cases of what would later become known as Acquired Immunodeficiency Syndrome (AIDS) were reported in the United States by the Centers for Disease Control in June 1981 [1]. This was quickly followed by reports of previously healthy young homosexual men becoming infected with Pneumocystis pneumonia, a type of pneumonia that almost never affects people with intact immune systems, as well as Kaposi’s Sarcoma, usually found in older men in Mediterranean countries [2].

2.National Library of Medicine’s (NLM) involvement in AIDS

Information about AIDS, HIV, research, transmission, and care became critically important. The Health Omnibus Programs Extension (HOPE) Act of 1988 (PL 100-607) included a section that provided funding for AIDS-related education, prevention, research, and testing. The National Library of Medicine (NLM) was prescient in its creation of bibliographic tools related to AIDS. Initially it created printed bibliographies and then AIDSLINE, an online database. Donald A.B. Lindberg M.D., Director of the National Library of Medicine made the official determination that this satisfied the legislative requirement to establish a “data bank of information on the results of AIDS research”.

The urgency of the situation led to significantly increased funding to the National Institutes of Health (NIH) specifically targeting work relating to the AIDS pandemic. The NIH Office of AIDS Research (OAR) was responsible for the allocations to each institute for their AIDS-related activities. Dr Lindberg was very firm that he only wanted NLM to accept the additional funding if there were worthwhile new programs NLM could do that would add to the improvement of the situation and solicited input from staff for their ideas. Besides continuing and expanding NLM’s traditional role of collecting books and journals, indexing the research literature, and making AIDSLINE and other databases available, Dr Lindberg and Library staff determined that it needed more input from users and potential users to understand their information needs.

3.HIV/AIDS information services conference

To obtain this information from the full gamut of users and potential users, NLM collaborated with the NIH’s OAR and the National Institute of Allergy and Infectious Diseases (NIAID) to hold a conference on behalf of NIH to identify the information needs of relevant constituent groups. The planning committee was chaired by Elliot R. Siegel Ph.D., NLM Associate Director for Health Information Programs Development, and consisted also of representatives from external organizations such as the National Association of People with AIDS, community-based organizations, public health agencies, and NIH staff. Gale A. Dutcher MS MLS, Special Assistant to the NLM Associate Director, Division of Specialized Information Services assumed day-to-day responsibility for organizing the conference.

The first step was to identify the potential audiences for NIH’s information. Initially they were basic science researchers, clinical researchers, clinical care providers, general public, and community-based organizations (CBOs). Preliminary research, including interviews with basic scientists, led to the elimination of basic scientists from the conference agenda as the feedback that was received showed that they had sufficient institutional access to the information they needed to advance their work. This was the type of information that NLM had been effectively providing for over 150 years.

The NLM/NIH HIV/AIDS information services conference took place in June 1993. It was organized around the HIV/AIDS information needs of five major constituency groups: clinical researchers; medical, dental, and nursing providers; allied health care providers; news media and the public; and patients and the affected community [3].

Keynote addresses by Dr Lindberg; Anthony Fauci M.D., Director, National Institute of Allergy, and Infectious Diseases; June Osborne M.D., Chair, National Commission on AIDS; and Debra Frazer-Howze, Black Leadership Commission on AIDS provided big-picture perspectives to the constituency group panels and the audience. Each panel represented a specific constituency group and was given a scenario to guide their discussion. The result of the panel discussions and audience participation was more than 40 recommendations to NIH related to information needs and access.

The planning group as well as the conference participants were diverse and included good representation from all those impacted by AIDS—researchers, policy makers, information providers, as the affected community. It was the first opportunity for many NLM staff to work with people infected with HIV or who were active in that community. While Dr Lindberg was not at all concerned by this, some of the NLM staff were worried about seating arrangements and being close to someone who might be infected.

4.New NLM initiative launched: HIV/AIDS community information outreach program (ACIOP)

It was clear from the conference discussions that people with and affected by HIV/AIDS wanted access to timely and accurate information. It was also clear that many members of this group and the community-based AIDS service organizations that had arisen in the earliest years of the AIDS epidemic did not have access to or the ability to access electronic information resources.

To provide support to these organizations, NLM issued a request for proposals (RFP) for AIDS community information outreach projects in May of 1994. This was NLM’s first significant outreach program for community organizations. The goals of this competitive funding opportunity were to support access to and the use of quality relevant information, including training, equipment, and connectivity. Further, the conference recommended that the public library system be utilized to provide assistance in getting accurate, timely information to the public.

In what turned out to be the first of many annual rounds of funding, a total of nearly $500,000 was awarded to 19 projects. The goal was to improve access to HIV/AIDS information for health professionals, patients, the affected community, caregivers, and the general public; encourage partnerships and community-focused activities; and promote awareness and use of technology applications for improved information access. The selected projects addressed one or more of the following:

NLM designed the AIDS community outreach program to improve access to HIV/AIDS-related information by CBOs, public libraries, people living with and affected by HIV/AIDS, and the general public. In response to guidance from its constituents in the HIV/AIDS service community, NLM’s role has been to specify the program objectives and the types of activities it would support. It respected the community’s expertise in designing and proposing projects most likely to be effective in their communities. NLM’s supportive role has fostered the development of projects that are “owned” by their communities, and helped to create productive working relationships between NLM and information providers.

5.Successive evaluations of the ACIOP

This program is more than 25 years old and has undergone periodic reviews, assessments and formal evaluations during that time period, which has led to modifications of the program to keep it useful, relevant and impactful.

The first review of NLM’s program covered 1994–1997 (unpublished internal document). It was essential to conduct this early review since the program was so new and different from anything that NLM had done previously. This unpublished review examined the reported accomplishments of the projects. It found that they could be grouped as follows:

NLM learned valuable lessons from this first set of projects which could then be applied to future program efforts. The staff of community-based organizations required a great deal of training to learn how to use electronic resources and to incorporate this information into their daily tasks. This was very early in the Internet era and staff were not using the Internet or telecommunications in their daily lives. Although public library staff were more accustomed to searching for information, they required extensive training in searching NLM’s databases and in accessing and searching the Internet before they were prepared to assist the public. One of the most important findings was that community-based organizations required more than one funding period to reach the point of providing direct access to electronic resources for their clients, or to otherwise bring their projects to a satisfactory point. NLM also recognized the importance of good leadership and in having a champion within the organization. This is critical in community organizations since there is often high staff turnover, extensive use of volunteers, and loss of important staff due to the impact of the disease.

Even during the relatively brief time covered in this review, the epidemic and the Internet changed significantly, and this impacted the community organizations. The Internet and the web became much more widely available and used, the demographics of the affected community shifted with increasing numbers of minority and lower income individuals becoming infected, and finally, there was an increasing need for more information about general health as people started living longer.

A later look at the program showed the impact and continued need for funding [7]. Through 2005, NLM made more than 190 awards and incorporated programmatic changes based on reviews and analysis of report submissions from the organizations. For example, the initial funding amount in 1994 was $25,000. Later, funding levels were raised to $50,000 for standard awards and an express category for $10,000 was added which supported smaller scale projects and required reduced application requirements. A qualitative assessment of projects funded in 2002 (most of which were carried out over a 2-year period) found that increased access, use and knowledge of HIV information significantly impacted the clients’ communication, improving their ability to ask knowledgeable questions. For many of the organizations, making technology and access to HIV information available in disadvantaged communities filled a significant gap in those areas and provided information and tools that would otherwise not be available. It also extended the reach of the organization beyond their immediate community. Anecdotes from users of some of these services have credited that the access provided was “keeping them alive”.

This assessment repeated the findings of the earlier review that a strong, committed project leader was an essential component for success. Further, the staff turnover, particularly in the smaller community-based organizations, was also a problem in managing projects and resulting in the loss of institutional memory and knowledge.

In 2012, a major external program evaluation was undertaken to determine the performance and impact of the AIDS community information outreach program (ACIOP). This systematic and detailed analysis was carried out by researchers from Columbia University in conjunction with the ACIOP staff at NLM [8].

It was important to review the program given the substantial level of resources NLM invested and in recognition of the changing environment over the approximately 20 years of the program. The researchers analyzed a sample of project reports and conducted structured interviews of a number of projects. Since 1994, the Internet and web have become pervasive and more accessible, and social media had become one of the main communication tools, especially among younger people.

This evaluation found that, in general, planned project objectives were achieved and successful projects built on existing efforts. Most of the projects identified barriers to success and found ways to overcome them. Some of these barriers repeated the findings of earlier assessments and reviews, such as staff changes leading to gaps in project management. The most significant problem or barrier identified was the lack of evaluation capacity in community organizations. We found that few community organizations had the staffing or training to know how to evaluate their projects.

One recommendation from this evaluation was that NLM provide more guidance and support to the community organizations to enable them to do more effective evaluations, including needs assessments and developing measurable objectives. NLM carried out a pilot project which involved helping a group of organizations to include evaluation in their ACIOP projects [9]. Based on lessons learned from this pilot, NLM modified the proposal submission and evaluation criteria for funding to include a required logic model so that evaluation planning was considered early in the program development process. NLM was able to determine the evaluation capacity of each proposer prior to award. Post award, NLM supported the organizations with evaluation consultation to ensure that their projects aligned with their logic model. This effort increased the successful implementation and evaluation of ACIOP projects and enhanced the evaluation capacity for low-resource awardees.

6.An innovative model for community-based outreach

Initial conception and direction of the ACIOP was under the leadership of Gale Dutcher who later became Chef of the SIS’s Office of Outreach and Special Populations. She was followed by her associate Nicole Scott whose very capable management of the ACIOP began in 2007; and Andrew Plumer assumed day-to-day responsibility in 2014. Ms. Scott was instrumental in guiding ACIOP’s several transitions, a comprehensive formal evaluation, and an experimental effort at capacity building enabling awardees to undertake their own project evaluations with the assistance of an evaluation consultant provided by NLM.

The ACIOP was a risky and unusual undertaking for an NIH Institute. Funding was provided in the form of targeted small contracts rather than grants as the Intramural administrative status of the NLM’s division of specialized information services is not authorized to award grants. Moreover, the contracts were structured for community organizations that were unlikely to have the staff expertise to compete for standard NIH research grants and were most likely unfamiliar with the federal contracting process. Dr Lindberg and NLM staff felt strongly that the critical nature of the AIDS epidemic justified this unusual funding approach.

NLM has funded over 300 ACIOP projects. The periodic reviews have led to program modifications to enhance the program, determine the impact of the ACIOP effort, and ensure ACIOP remains relevant and responsive to current community needs. Project funding has fluctuated over time and reporting has improved, as NLM created more structured reporting and evaluation criteria to determine the impact of the projects. As the epidemic changed and technology became more ubiquitous, the emphasis of the projects also changed, as did the needs of the organizations. One thing remained true throughout the entire time—the importance of meeting the needs of the local community and their local authority of the projects. All in all, using NLM’s quality information resources was essential at the local and national level.

ACIOP awardees were community organizations mostly serving minority, disadvantaged or marginalized populations. Over the years, NLM has established partnerships and built relationships with communities where their lack of trust may have inhibited NLM’s direct reach and engagement with diverse populations that need HIV information the most. By working with organizations and identifying “ambassadors” and “champions” in communities that have already developed trusted relationships with their clients and community members, NLM has been able to ensure that ALL individuals have access to high quality, accurate and authoritative information in settings that are comfortable for them.

The AIDS community information outreach program continues to be relevant and beneficial both to the HIV/AIDS community and to NLM. It remains a very important component of NLM’s work with communities and community organizations. Lessons learned over time have proven relevant not only to this one program, but to information outreach in general, whether directly from NLM or through the Network of the National Library of Medicine (NNLM) [10]. The success of NLM’s community-based outreach can be attributed to Dr Lindberg’s leadership and his staff’s willingness to break away from what was considered the “normal” established audiences and partnerships as initially identified in the then-groundbreaking 1989 DeBakey Outreach Panel Report [11]. NLM outreach broke new ground and progressed in new directions with the evolution of the AIDS community information outreach program.