Information Dissemination
The NIH has responsibility for disseminating information to support research, treatment, and prevention related to HIV and AIDS. Progress in these areas depends upon the transfer of information to researchers, health care providers, those who provide HIV-related services, and HIV-infected individuals and their advocates. These audiences have varying needs for information that is critical in the fight against HIV/AIDS. To address these needs, the NIH has ongoing programs as well as new initiatives in several arenas.
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Since 1991, the NIH has used a dedicated system of electronic and print notification, collectively known as Clinical Alerts, to rapidly disseminate to health care professionals, the news media, and the general public information that critically affects the care of patients, such as results of HIV-related clinical trials. This mechanism was recommended by participants, including researchers, medical journal editors, and others, in a workshop convened by the NIH to discuss expedited information dissemination. While affirming that traditional systems of reporting research results should be maintained, the group recognized that, in some exceptional circumstances, information with immediate clinical relevancy should be expeditiously reviewed and widely distributed prior to publication in a peer-reviewed medical journal. Clinical Alerts are available online on the MEDLARS system and provided for dissemination in academic health science centers and more than 3,000 hospitals; they are also transmitted via Internet to all requestors. The National Network of Libraries of Medicine has developed methods to ensure the wide dissemination of the Clinical Alerts.
In February 1994, NIAID/NICHD utilized Clinical Alerts to disseminate rapidly the results of ACTG 076, which showed decreased transmission of HIV from mother to child when the mother and child received treatment with zidovudine (AZT). A summary of the results was prepared by NIAID and made available online through all Clinical Alerts dissemination mechanisms. In addition, NIH staff played an integral role in the NICHD-chaired PHS Task Force that developed the clinical recommendations based on ACTG 076.
Physicians and patients must have access not only to Clinical Alerts and the results of clinical trials but also to clinical care guidelines, standards of care, and results of state-of-the-art meetings that redefine clinical care guidelines. Recommendations from the NIAID-sponsored state-of-the-art meeting on antiretroviral therapy for HIV-infected adults, held in June 1993, were widely distributed to the AIDS community and to health care providers. In addition, guidelines on OI prophylaxis, PCP prophylaxis for children with HIV, and recommendations for the use of AZT to prevent perinatal HIV transmission, which have been developed by the NIH and other agencies of the Public Health Service (PHS), have been made available online in their complete versions as well as through an NIH-supported toll-free service.
It is also critical to ensure that prevention information is effectively disseminated to community service providers. NIDA has established Community Alerts, a method to reach the drug abuse and drug abuse-related HIV/AIDS community with emerging issues of concern. The first of these addressed the re-emergence of tuberculosis among HIV-infected injection drug users (IDUs) in 1992. The second, released in 1993, alerted the community to the limitations of bleach disinfection of drug use paraphernalia, which has been a critical approach to stemming HIV transmission among IDUs.
NIDA has produced an educational videotape for policymakers and professionals working in the drug abuse and HIV/AIDS fields. The research-based models, which grew out of NIDA's National AIDS Demonstration Research (NADR), present successful outreach approaches to reduce high-risk drug use behaviors among IDUs.
NICHD provided financial and technical assistance to the Agency for Health Care Policy and Research to develop its educational materials for pregnant, HIV-infected women. These materials provide information on using AZT during pregnancy to reduce perinatal transmission of HIV and are intended to assist pregnant, HIV-infected women in deciding whether to use AZT. The materials consist of a poster, brochures, and handouts, as well as audio and video tapes in several different languages.
Existing computerized data bases including those on the MEDLARS system (AIDSLINE, AIDSTRIALS, AIDSDRUGS, and DIRLINE), as well as the AIDS Clinical Trials Information Service (ACTIS) and the HIV/AIDS Treatment Information Service (ATIS), are vital to information dissemination. They provide the foundation for the global dissemination of information concerning basic research, clinical trials availability and results, and standards of care as well as information of interest to HIV-infected individuals and their advocates.
Information available from the MEDLARS data bases includes citations (with abstracts when available) to journal articles, books, and audiovisuals as well as abstracts from many major AIDS-related meetings and conferences (AIDSLINE); descriptions of clinical trials related to HIV, AIDS, and AIDS-related opportunistic diseases and the agents that are being studied in those trials (AIDSTRIALS/ AIDSDRUGS); and international, national, and State organizations working in the AIDS area (DIRLINE). In response to recommendations by the AIDS advocacy community, the data bases are available free of charge to users. The National Library of Medicine (NLM) has expanded the AIDSLINE data base with the addition of abstracts from many scientific meetings. OAR has worked with NLM to identify meetings, particularly those meetings supported by the NIH, and obtain copies of the abstracts for inclusion in the data base. In addition, citations, with brief summaries, to substantive articles from over 20 newsletters are being added to the data base. Initiated in 1989, ACTIS is a centralized resource providing information on NIH- and industry-sponsored clinical trials for HIV/AIDS. This is a free service to users and is jointly sponsored by NIAID, NLM, and FDA in collaboration with CDC. By dialing a toll-free number, 1-800-TRIALS-A, callers can speak to trained health specialists who access a data base featuring information on AIDS clinical trials. Spanish-speaking specialists are available. The information can also be accessed directly through the NLM's AIDSTRIALS and AIDSDRUGS data bases. This information is also available electronically from the NLM as part of the HSTAT data base which includes clinical practice guidelines and recommendations on many health concerns.
To complement the ACTIS project, the NIH collaborated with other agencies of the PHS in the development of ATIS, which provides timely, accurate treatment information on HIV and AIDS through the CDC National AIDS Clearinghouse. Available since November 1, 1994, ATIS is a toll-free (1-800-HIV-0440), bilingual, telephone reference service for people with HIV disease, their families and friends, and health care providers, providing answers to questions about treatment of HIV infection as well as copies of federally approved HIV/AIDS treatment guidelines and information.
The Internet is an expanding and increasingly important medium for information dissemination. The NIH is increasingly utilizing this medium in tandem with its other information dissemination avenues. For example, NIH Home Pages such as for NIAID and the OAR are online, providing extensive HIV/AIDS research and programmatic information for the public, patients, health care providers, scientific investigators, and policymakers. ACTIS (www.actis.org) and ATIS (www.hivatis.org) both have World Wide Web sites that will increase their usefulness. The NLM has created a World Wide Web home page specifically for HIV/AIDS-related information (http://sis.nlm.gov/aidswww.htm). This serves as an entry point to many of the HIV/AIDS-related resources available from the NIH as well as those from NLM. It also serves as a guide to selected resources worldwide.
The NIH recognizes that it is critical to establish relationships with target audiences that encourage and foster bi-directional communication. In this regard, the NIH works with members of these audiences to understand their information needs and to involve them with the development of treatment and prevention guidelines as well as specific informational materials.
Early in the AIDS epidemic when the risk of transfusion-transmitted HIV was still significant, the NHLBI instituted the National Blood Resources Education Program (NBREP). This program facilitated the education of health care professionals about the proper use of blood and blood products in an effort to limit the use of potentially infected blood. The NBREP resulted in the publication and dissemination of multiple education pamphlets and articles in peer-reviewed medical journals.
In an effort to enhance understanding of information needs, resources, and services, NLM and OAR cosponsored a conference in June 1993 that brought together users of NIH information resources, including health care providers, scientists, information specialists, journalists, and members of the community affected by HIV/AIDS. The purpose of the conference was to review the various HIV/AIDS information services, assess current efforts with respect to needs, and identify additional needs. The resulting recommendations were widely circulated for planning and informational purposes.
In response to recommendations from the conference, in FY 1994 and FY 1995 NLM made 35 awards of up to $25,000 each to enable community-based organizations and public and health science libraries to design their own programs for improving AIDS information access to targeted groups within their communities. Such groups include people with HIV/AIDS and the affected community as well as their care givers and the general public. Supported activities included purchasing equipment and telecommunications services, implementing Internet access, training in the use of sophisticated information tools, and developing language and culturally specific materials. NLM has also funded three major testbeds for improving HIV/AIDS information access: one to examine the functioning of a multitype consortium of academic, public, and hospital libraries along with community organizations as a means to get information to the affected community; another which has developed and field-tested a training curriculum on accessing HIV/AIDS information by non-health professionals; and a third which provides access through a dedicated center in a public library.
As part of a larger program of training in the use of online data bases that NLM has been conducting with the Historically Black Colleges and Universities (HBCUs), a new AIDS module has been created. The first pilot training course was taught in 1995 with materials specifically tailored for minority health professionals. Training in the use of electronic resources continues at the HBCUs and through other groups of minority health professionals such as the National Association for Equal Opportunity in Higher Education (NAFEO).
An important challenge to the NIH is to provide accurate and up-to-date HIV/AIDS treatment information to people in underserved communities and communities of color. A collaborative workshop held in 1993 provided insights about barriers to effective communication and recommended solutions that are being implemented by individuals and organizations at every level. The workshop was organized by NIAID working with OAR, the Health Resources and Services Administration, and the Public Education Technology Transfer Working Group of the NIAID AIDS Clinical Trials Group.
NIAID is also working to increase understanding of clinical research and the differences between clinical trials and patient care, particularly by those in underserved communities. This communications effort is essential to NIAID's longstanding goal of recruiting hard-to-reach populations into clinical trials. A key part of this effort is building trust and strengthening outreach to local and national community organizations. Toward this end, NIAID has developed a kit of English and Spanish language materials to assist health care providers, particularly in community clinics, in educating their patients about HIV and the diseases associated with AIDS and how to find out about clinical trials. The kit contains fact sheets on opportunistic infections and a "How To Help Yourself" series of eight attractive brochures for low-literacy audiences. These materials are available in bulk from the National AIDS Clearinghouse.
NIDA has conducted a series of meetings with representatives of ethnic minorities and other underserved populations to discuss the development of drug abuse and HIV/AIDS related materials.
NIDA's drug abuse and AIDS public education program provides specifically targeted television, radio, and print materials aimed at audiences at high risk for contracting or transmitting HIV infection. The first campaign, "Stop Shooting Up AIDS," targeted IDUs, their sexual partners, and others close to them. The target audience of the second campaign, entitled "AIDS, Another Way Drugs Can Kill," is the population aged 12 to 18 years. The third campaign, "Get High, Get Stupid, Get AIDS," was launched in August 1992 and targets young adults aged 18 to 24 years. These campaigns point out the link between drug/alcohol abuse, altered judgment, and risky sexual behavior that can contribute to exposure to HIV. The messages are based on a growing body of research that demonstrates the association between drug/alcohol abuse and high-risk behaviors in these groups.
In December 1995, NIAID prepared and widely disseminated an updated NIAID HIV/AIDS Research Agenda. The document describes the breadth and depth of the comprehensive NIAID AIDS research program and future plans in those fields relevant to the NIAID mission. The document serves to inform others about the scope of NIAID's HIV/AIDS program.
In 1995, NIMH established a Consortium on Technology Transfer, supported by discretionary funds from the Office of AIDS Research, Office of the Director, NIH. This consortium has developed and is testing different models of transferring HIV prevention technology from research settings to service settings and from service settings to researchers. This consortium will assess the benefits of translating research findings on effective strategies for HIV prevention for community-based providers, funding agencies, health planners, and policymakers. Areas of focus will include: (1) increased use of methods of behavior change whose effectiveness has been empirically demonstrated; (2) increased capacity to identify and provide outreach to hard-to-reach populations; (3) increased use of more sophisticated and rigorous evaluation designs and methods; and (4) increased coordination of individual prevention methods in comprehensive community-wide strategies to change norms. Ultimately, these studies will be summarized and provided to service providers and policymakers as guidelines for HIV prevention dissemination.
In 1996, NIMH and the Office of Medical Applications of Research (OMAR) will sponsor "The Consensus Development Conference on Interventions to Prevent HIV Risk Behaviors." The goal of OMAR consensus conferences is to review an area of NIH-supported research where there may be a gap between research accomplishments and clinical care. After careful review of the research, a statement will be developed and circulated widely to primary care physicians and other health care providers to inform them of HIV prevention programs.
NIMH is currently preparing an extensive report on behavioral methods in AIDS research to stimulate innovation in AIDS behavior research, which will be released in the summer of 1996. As part of this report there is a section entitled "Panel on Information Dissemination, Intervention Diffusion and Media Coverage," which presents a research agenda for communication science.
The NIH has called for leadership at the PHS level for coordination of activities related to defining standard HIV information needs and related responsibilities. A special interagency working group for HIV/AIDS information dissemination has been formed under the DHHS Office of HIV/AIDS Policy. The working group provides a forum for the coordination of HIV/AIDS information and the formation of policy recommendations on related issues.
A "Guide to NIH HIV/AIDS Information Services," developed by NLM and OAR, has been updated and made available in both printed and electronic format through NLM's AIDS home page. This pamphlet provides a comprehensive listing of NIH-supported information services that assist care and service providers, patients, and the public in their quest for knowledge about HIV/AIDS. This pamphlet describes these services as well as selected information services sponsored by other agencies of the PHS. The electronic version provides links to all the NIH and PHS sites and resources that are described in the pamphlet.
There is a growing concern that some of the information disseminated to date has not been useful to or usable by health care providers, service providers, people with HIV/AIDS and their advocates, at-risk populations, and basic and applied researchers. It is therefore essential to develop a research agenda that will provide data to help understand and improve all aspects of the information dissemination and communication process. Of particular importance is research designed to understand and improve the information exchange process, especially with respect to identifying and overcoming barriers to effective communication. Additionally, research is needed to evaluate the effectiveness of information and behavior change communication campaigns.
The NIH recognizes the critical importance of disseminating internationally (especially to developing countries) research and treatment information, patient management guidelines, and research results that impact on the care of HIV-infected individuals. The existing computerized data bases from NLM as well as from ATIS and ACTIS are available worldwide. However, a number of special issues remain, including the lack of computer capabilities and access to journals in many countries, language barriers between the United States and other countries (as well as dialect and cultural barriers within countries), and the lack of resources to provide a standard of care comparable to that available in the United States.
The rapidly expanding field of information technology coupled with sound communications and information science research provides unprecedented opportunities to enhance the capabilities of individuals, organizations, and communities to address HIV and AIDS in the diverse ethnic, racial, and cultural groups they serve. The flow of information among researchers, health care providers, and the affected communities represents new opportunities to rapidly translate research into practice and to shape future research directions.
For more information on HIV/AIDS-related Information Dissemination activities at the NIH, contact:
Paul Gaist, M.P.H.
Office of AIDS Research, NIH
Building 31, Room 4C06
Bethesda, MD 20892
(301) 402-3555 TELEPHONE
(301) 496-4843 FAX
The National Library of Medicine (NLM) provides the following online databases with information about AIDS research:
Last Update: October 4, 1996
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