Data Gathering Activities
I. COMMUNITY PLANNING LEADERSHIP SUMMIT
On March 29, 2000, members of the IOM Committee attended the Community Planning Leadership Summit in Los Angeles, CA, to hear invited presentations and to conduct informal meetings with individuals involved in the HIV/AIDS community planning process at the federal, state, and local levels. Among the central topics discussed, the participants examined what progress has been made in HIV/AIDS prevention, what barriers still hinder prevention efforts, and what steps are needed to help overcome those barriers. Although this review cannot cover all of the issues discussed, the following descriptions cover some representative samples of the observations.
Community planning, as an official at the Centers for Disease Control and Prevention (CDC) noted, should be built on three basic principles. The first is that participation by a broad range of community members—or “community voices”—is essential. The second is that funding for HIV/ AIDS prevention should try to “get ahead” of the epidemic, rather than follow outbreaks of infection. The third is that interventions should be based on sound science and public health practice.
Although efforts are being made to expand the range of “community voices” participating in planning groups, some populations remain relatively underrepresented, according to the participants. For example, African American and Latino populations often are not adequately represented, given that these racial/ethic groups are particularly hard hit by
HIV/AIDS, especially in large metropolitan areas. Many participants also noted the importance of maintaining representation on planning groups by people living with HIV/AIDS and by people whose lives are significantly but indirectly affected by HIV/AIDS, such as the family members of infected individuals.
In trying to keep funding for prevention abreast of changes in the epidemic, many participants noted that major challenges remain in serving men who have sex with men, as well as injection drug users. Men from racial and ethnic minority groups, including gay men, bisexual men, and men who do not identify themselves with either of these groups, are of particular concern, as they now comprise a majority of the HIV/AIDS cases among men who have sex with men. Some participants said that heterosexual women, particularly women from racial and ethnic minority groups, who now represent the largest proportion of women impacted by HIV/AIDS, are in need of increased attention as well. In this regard, participants called for more research to be devoted to developing prevention methods that women themselves can control, such as microbicides. Increased prevention efforts also should be targeted at young people, many of whom are sexually active and, because they came of age after the first flourish of HIV/AIDS prevention activities, may not have gained adequate knowledge of risk behaviors and methods to reduce those risks.
In addition, participants noted that as new treatments are becoming available, more people are living with HIV/AIDS, and thus it is becoming increasingly important to target interventions to reach HIV-infected individuals. In some communities, the participants reported, growing numbers of infected individuals apparently are resuming high risk behaviors that hold potential for spreading the epidemic. Advances in treatment are having another effect as well, according to some participants, who noted their worry that more and more policymakers, from the federal to the local level, seem to be shifting both their concern and their budget priorities, away from prevention and toward treatment-only programs.
There was some disagreement about whether prevention interventions being used today are indeed based on the latest scientific evidence. Federal officials generally maintained that the majority of prevention programs being implemented incorporate methods that many observers view as effective. Some representatives of state agencies and private groups, however, suggested that in some communities, both the planning process and intervention efforts are often “more gut-based than evidence-based,” as one participant said. All participants agreed that more attention should be directed at program evaluation in order to document—in a variety of communities, using a variety of interventions, and focusing on a variety of at-risk populations—which prevention methods work best under particular conditions. In this regard, some participants pointed out the need
to evaluate interventions conducted in rural areas, where conditions often are greatly different than in metropolitan areas with higher concentrations of at-risk individuals, and where local experience offers little guidance for success. Evaluation also should be directed at determining the cost-effectiveness of various interventions, as such information generally is lacking. As one participant from a city HIV/AIDS prevention office reported, “We make many of our program decisions based on ‘cost and assumption’ of effectiveness, rather than on solid evidence of actual cost and effectiveness.” Such evaluation efforts, participants added, should incorporate improved systems of data collection and should involve longer-term follow-up that typically is used today.
One major area of agreement among participants is that there must be a greater level of coordination and cooperation in all aspects of HIV/ AIDS prevention, from the funding and planning of programs to their implementation and evaluation in specific communities. Many participants from state and private groups agreed, as one participant noted, that “the HIV prevention system is poorly coordinated and accounted for within and across government agencies.”
At the federal level, a participant from a national AIDS organization called for more coordination among the Health Resources and Services Administration (HRSA), the Department of Health and Human Services (DHHS), the National Institutes of Health (NIH), and the CDC in developing programs that address multiple issues related to prevention. A representative of a state AIDS agency added that “CDC and HRSA must do a much better job of working with each other to identify prevention goals.” In particular, there was a strong call, endorsed by numerous participants, for more coordination between federal and state agencies to ensure that local community planning groups get the resources they are requesting to improve prevention efforts. Several participants also called for establishing a single point of contact for federal and state funding to streamline the process and ensure that all state and local groups, both public and private, have equitable access to “the system.”
Coordination of both funding and programs needs to be improved at the state and local levels as well. “We sometimes have two agencies funding programs in the same locations, and neither the funders nor the groups carrying out the interventions really know what the other project is about,” according to a representative of one state agency. Another participant from a city HIV/AIDS group noted that the community planning process has become “essentially disconnected” from the health department. Participants also said there should be better communication and interaction among researchers studying some aspect of HIV/AIDS prevention in a particular community and those groups or individuals who actually are conducting the prevention. “Too often, researchers come in,
gather the data they want, and then leave,” noted one local HIV/AIDS representative. “We never hear from them again about what they learned or how we might benefit. They seem to be focused mostly on publishing the results in some scientific journal.”
Participants noted that interventions should be targeted increasingly at groups of people who are at highest risk of HIV/AIDS. These groups often vary by region, state, community, or even, as has been found in many cases, on a block-by-block basis. Planning groups should make identifying these at-risk populations a priority. As one participant from a state agency reported, “We can’t simply rely on what we ‘know to be true’ from national statistics, or on what we have read about regarding other communities, because these data often turn out to be untrue or outdated for our particular community. We’ve got to find out who faces the highest risks in our own local areas.”
Prevention efforts then should be conducted in a consistent, on-going, and nonintrusive manner. Intervention services should be made available in the neighborhoods where high risk individuals live, congregate, procure drugs, or engage in sex trade, and the services should be readily available at the times when recipients most need them. Interventions should be culturally appropriate and, in some cases, language specific. Culture in this case includes not only ethic and racial considerations, but also the culture of the specific community in which at-risk individuals live or socialize. Said one representative of a national AIDS organization: “Consider just gay men, for example. There’s a difference in the strategies that need to be used to reach men in the rural south, or men of color living in a New York ghetto, or men living in Latino communities. These men all have different social and cultural contexts, and we need to develop ways to reach each of these populations that will have the greatest impact in changing their behaviors.”
One major challenge in reaching many target populations, especially those often marginalized by society, is the need to develop a sense of trust between the service providers and service recipients. Many of these populations, said the participants, have developed a profound lack of trust in official systems. “Often, this mistrust is well rooted in their life experiences,” noted a representative of a city HIV/AIDS group. “In too many cases, official systems—from the public health system to the legal system to public service systems—have by and large not recognized or valued their fragile life situations.” Developing interventions that foster an individual’s long-term engagement will be key in turning around this distrust and making prevention efforts seem safer and more user-friendly to increasing numbers of people now out of reach of conventional public and private programs.
To help them in developing and implementing prevention programs,
many communities need increased technical assistance from federal and state agencies, as well as private organizations, that have experience in this area. Some participants noted that this is a particular need among groups working in racial and ethnic minority communities, where, until recently, attention to and funding for HIV/AIDS programs has been limited. A representative of one federally supported organization that provides such services defined technical assistance as the provision of direct or indirect support to increase the skills of individuals and/or groups to carry out programmatic and management responsibilities with respect to HIV/AIDS prevention. Help is available in such areas as community planning, use of epidemiological data for decision-making, assessment of local needs, and evaluation of intervention effectiveness. The goal is to help communities develop their own capacity to assess their needs, coordinate the intervention from beginning to end, and assess the outcomes. However, some participants noted that current federally funded technical assistance programs work in only a piecemeal way. This creates a system of technical assistance by which communities and organizations get isolated help with one planning component area, such as data collection or social and behavioral science theory. But what is lacking is integrated technical assistance that shows how each of these components is interconnected.
It is becoming increasingly important that HIV/AIDS prevention and treatment programs be offered in conjunction with a range of other health and social services, many participants noted. Such integration will provide an increased number of avenues for reaching at-risk individuals. Primary care facilities, drug treatment centers, sexually transmitted diseases clinics, and mental health centers all should have the capacity to deliver HIV/AIDS prevention services. Building this capacity in many cases will require investing more resources to equip the facilities and to train staff. But this integrated approach offers the potential to draw more infected and at-risk individuals into the general health care and social services systems, where they can receive a wide range of services to help them meet the numerous pressing needs they often face in their everyday lives.
Some methods of HIV/AIDS intervention have proved to be socially or politically controversial, and many participants called on public agencies and public health officials to argue for their incorporation in comprehensive prevention campaigns. For example, numerous participants said there is ample scientific evidence that needle exchange and needle cleaning programs are effective in reducing the incidence of HIV/AIDS among injection drug users and their sexual partners, and that such programs do not result in an increase in illegal drug use. “We have the capacity to reduce effectively HIV transmission among injection-drug users, but we don’t have the political will to provide the resources so
these strategies can be implemented on a nationwide basis,” one representative of a national HIV/AIDS organization maintained. “By that, I mean there is no political will to lift the ban on using federal funds for needle-exchange programs.” Some states have gone ahead with such programs without federal support, and several representatives from state agencies reported that their programs have indeed proved successful. Some of these representatives, however, expressed worry over stories they have heard about moves within the federal government to block funding for all HIV/AIDS treatment and prevention to states that support their own needle exchange programs. Community programs that include the distribution of condoms, as well as school programs that describe HIV/AIDS prevention measures other than abstinence, also have come under fire in some locations. Participants said they want public policymakers to strongly endorse the importance of providing condoms in prevention programs, and to encourage local school districts to implement comprehensive sex education and condom availability in their health programs. As one participant concluded, “Leadership is needed in making the case, to the public and to policy makers, that sanctioning interventions to prevent HIV infection is not equivalent to sanctioning the behaviors that transmit the disease.”
II. REQUEST FOR PUBLIC COMMENT
The IOM Committee issued a request for public comment to obtain input on issues relating to state and local HIV/AIDS prevention efforts. The request, which was posted on the project Web site, asked for responses to questions in six general areas: data needs, technical assistance, translation of prevention research into practice, program evaluation, coordination and implementation of programs, and opportunities and barriers. The Committee received 32 responses from individuals and organizations in 19 states and Washington, D.C. Comments were submitted by a variety of groups, including state health departments, local health departments, and capacity-building organizations, as well as by members of the general public. Although this review cannot cover all of the comments submitted, the following descriptions cover some representative samples of the observations.
Numerous respondents cited the need for the federal government to create a national name-based HIV/AIDS surveillance system. “This is necessary to understand the current burden and epidemiological profile of the disease and to appropriately allocate funds and target interven-
tions,” noted a state HIV/AIDS program official. Respondents also noted the need to increase behavioral surveillance in order to better analyze patterns in risk behavior, to expand data collection in rural areas, and to improve data collection on the incidence and prevalence of HIV/AIDS in federal and state correctional institutions. In addition, many respondents said that, at the local level, community planning groups need better data to pinpoint the populations at greatest risk for new HIV infections and to identify the service needs of persons living with HIV/AIDS. Local groups also need to receive from the federal government specific information and techniques on how to prioritize target populations from epidemiologic profiles.
As one caveat regarding the need for expanded data collection, a state agency representative made the following request: “Do not ask states to institute complex prevention data and reporting systems that focus primarily on the need of the federal government to justify prevention. This sometimes makes it difficult to focus on real prevention and evaluation data needs.”
Federal and state agencies should better coordinate their technical assistance efforts, to minimize overlap in funding and data gathering and to ensure that all prevention programs have adequate infrastructure to carry out their activities. “There is significant duplication of effort between the technical assistance efforts of the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA),” said a former state HIV/AIDS program official. “While each agency should have the capacity to deliver technical assistance on request of its grantees, such assistance should be coordinated so that prevention and care groups locally benefit.”
Respondents also noted that not enough attention currently is paid to the value of peer-to-peer technical assistance. “One jurisdiction can be very helpful to another, and often this will be more effective than having a federal employee trying to figure out what a jurisdiction needs, especially without having direct experience,” reported a state HIV/AIDS program official. Some respondents also called for technical assistance that is more practical than theoretical or organizational in nature. “For example, with outreach, we want to learn exactly where to go, at what time, what to bring, what to wear, how to act, what to say in this situation or that situation, what to do with this person or that person, and so on,” one foundation official said. “We want real hands-on help in how to better work with our clients in our local environment, not more theories and generalizations of application.”
Translation of Prevention Research into Practice
Many respondents suggested that the translation of prevention research into practice often has been too slow. Various suggestions were offered to speed up this process. For example, CDC was called on to establish an interactive Web site that would enable its grantees and others to rapidly exchange information about prevention initiatives.
Respondents from some community groups also reported that they are having difficulty obtaining up-to-date information about intervention programs and their effectiveness. To help overcome such problems, a state HIV/AIDS program official suggested that research findings from federally supported studies should be disseminated in a timely manner and in a format that is easily accessible by a variety of audiences. “Guidelines for application to intervention development and/or refinement should accompany the research findings,” the respondent added. Other program representatives suggested that, in order to facilitate rapid dissemination of research findings, federal agencies should be encouraged to use multiple technologies, including Internet technologies and satellite teleconferences.
Few community-based organizations have the staff or resource capability to employ or retain behavioral or social scientists to conduct HIV/ AIDS prevention research, according to respondents. On the other hand, there are few incentives for researchers to form collaborative partnerships with community-based organizations that go beyond a specific research project. As a result, there is often a “disconnect” between research and program implementation. One proposed solution is that research funding should promote such collaboration and partnership to build community capacity so that its prevention efforts not only benefit at-risk individuals but also contribute to HIV/AIDS prevention science.
Evaluating how well interventions work has been a key “missing link” in prevention efforts. As one state HIV/AIDS program official said, “It is unfortunate that we are just now beginning to evaluate our prevention programs systematically, under a common guidance, some 12 to 13 years into federal funding of these programs. Any new initiatives required by CDC should learn from this and build an evaluation component into new funding initiatives and their program requirements.”
CDC also was called on to provide local jurisdictions with more guidance on how to conduct cost-effectiveness studies.
Program evaluation can be especially difficult for states that receive only minimal funding for HIV/AIDS prevention. “We need funds for
hardware, software, and technical assistance to set up the computer-based data collection systems that will assist us in outcome evaluations,” reported one university researcher working with the state health department.
Some respondents added that the term “evaluation” itself needs to be better defined, in order to ensure consistency in evaluations conducted by different types of groups working at various locations.
Coordination and Implementation of Programs
Many respondents called for improved coordination of all aspects of HIV/AIDS prevention, from the funding and planning of programs to their implementation and evaluation in specific communities. Lack of coordination among federal agencies, such as CDC and HRSA, is pin-pointed as the cause of “red tape” that slows down the progress of state and local organizations. Translation of behavioral or social science also has been greatly hampered by lack of coordination among federal agencies engaged in research and those supporting prevention and care services. “It is critical that research agendas be developed collaboratively among federal agencies to assure that research activities clearly address priority needs related to program development and support, and that findings are applied to program refinement in a timely manner,” noted a state HIV/AIDS program official.
There also needs to be better coordination between groups or facilities that provide HIV/AIDS prevention and facilities that provide other health-related services, such as primary care clinics, drug treatment centers, sexually transmitted diseases clinics, and mental health centers. “It is very difficult to put prevention interventions into place for only HIV/ AIDS clients and to ignore the need to provide similar messages and programs for other sexually transmitted diseases,” a state HIV/AIDS program official said.
In terms of implementing prevention programs, respondents agreed that one size does not fit all. Rather, interventions should be tailored to specific needs, and programs need to be culturally relevant and, in many cases, language specific in order to reach targeted at-risk populations. Intervention services also should be made available in areas where high-risk individuals live or socialize, and the services should be readily available at the times when recipients most need them.
Respondents also pointed to some special needs. For example, federal and state agencies should recognize and address the impact of rural cultural differences on HIV/AIDS prevention efforts. “These differences must be considered in development and funding of prevention interventions,” said one state HIV/AIDS program official, and respondents called
for one of these agencies to develop a guide or summary document regarding effective interventions in rural areas. In addition, agencies need to learn more about how to serve specific subpopulations—including vision-impaired or hearing-impaired individuals, women who are injection-drug users, and adolescent sex workers—who typically have not been targeted for intervention. “Individuals with special needs often lack sufficient training or educational literature that address those specific needs,” a state HIV/AIDS program official noted. “For example, how do you demonstrate condom use to an individual who is blind or to someone who is mentally challenged?”
Opportunities and Barriers
Many respondents reported that their greatest barrier continues to be a shortage of financial resources to implement prevention programs. “Our state’s planning activities are very strong, but community members become frustrated when they want to implement local plans but don’t have sufficient resources to do so,” noted one state HIV/AIDS program official.
Respondents also noted that there appears to be growing complacency among funders, policymakers, the media, and even many community members about HIV/AIDS prevention, while at the same time there continues to be a growing sentiment among policymakers that HIV/AIDS is treated preferentially, receiving a disproportionate among of funding and attention compared with other health issues. These respondents went on to say that renewed leadership is required, at the national, state, and local levels, to re-engage governmental and nongovernmental support for HIV/AIDS prevention programs.
Among the various opportunities cited, respondents wanted federal and state agencies to expand mass media HIV/AIDS prevention education messages that support local efforts to educate the public on the entire continuum of risk reduction and the level of risk associated with specific behaviors. These messages should be nonjudgmental but communicate that HIV/AIDS is still a dangerous and ultimately fatal disease. Respondents also suggested that in many racial and ethnic minority communities, ethnic media have been greatly underutilized. Such media, especially ethnic radio, offer lower cost ways to reach target populations.
In the educational arena, many respondents called for federal and state agencies to support implementation of classroom instruction on the transmission and prevention of sexually transmitted diseases, including HIV/AIDS. The federal government, they said, should reconsider its prohibition against funding school programs that discuss prevention strategies other than abstinence. “This often forces schools to choose between
politically correct abstinence and effective comprehensive skills-based instruction.” One parent, however, suggested that it is appropriate that schools offer programs that discuss only abstinence, arguing that condoms are known to fail and that young people are best counseled to save sex until marriage.
To address the disproportionate impact of disease in racial and ethnic minority communities, the federal government should increase collaboration among agencies working on HIV/AIDS prevention and the Office of Minority Health. In particular, the government should fund demonstration projects to provide a continuum of health-related services within minority communities. This broader-brush approach would affect many diseases and events—including stroke, heart attack, diabetes, and homicide—along with decreasing the incidence of HIV/AIDS.
To foster HIV/AIDS prevention among injection drug users, federal and state agencies should increase their funding in order to increase the number of “treatment slots” in substance abuse programs. Some respondents noted that there is, in particular, a shortage of funding slots for special populations (for example, women with children, HIV-infected persons with mental illness, immigrants, and the formerly incarcerated). Federal and state agencies also should expand training provided to substance abuse prevention and treatment providers regarding basic information on HIV/AIDS and effective prevention strategies. Many respondents also suggested that the federal government should lift its restrictions on the use of federal resources for needle exchange programs. “My state conducts syringe exchange without using federal funding, but our budget currently limits how far we can integrate this program into the whole of HIV prevention,” said one public health official. “CDC must continue to make progress on addressing HIV infection among injection drug users by asserting that syringe exchange programs are a high-priority intervention that needs to become fully funded.”
III. SITE VISITS TO STATE HEALTH DEPARTMENTS
During the course of the study, four Committee members conducted interviews with officials working in state and city health departments. Two of these departments are located in the northeastern United States, one in the mid-Atlantic region, and one in the northwest region. These visits were considered data-gathering sessions and were intended to inform the Committee with regard to prevention activities at the state and local level.
The conversations were constructed around seven primary questions the Committee members were asked to address. The issues that were covered included: HIV prevention strategies, data needs, technical assis-
tance, program evaluation, potential collaborations, opportunities, and barriers.
Officials stated that CDC does not seem to care what the community thinks when it comes to their strategic plan.
Officials expressed concern about the lack of coordination within CDC itself.
It is believed that the CDC has “little in house behavioral science expertise.”
The CDC won’t support good existing programs (it’s more likely to provide money for new programs), and this undercuts the notion of doing evaluations.
There’s a lack of communication between CDC and local organizations (e.g., state health departments) when it comes to prevention efforts.
The health departments reported trying to get the Community Planning Groups (CPGs) to look at cost-effectiveness three years ago, but due to a lack of systematic information about cost-effectiveness across all prevention programs, it could not be used as a criterion.
How do you prioritize and select HIV prevention strategies to implement in your state (or city)?
Prioritize based on: demonstrated need, intervention effectiveness, and cost analysis.
Prioritize using HIV/AIDS epidemiological data (mainly AIDS cases), service delivery data (where are people going for care), Medicaid data, recommendations from CPGs, cost-effectiveness data, and proven interventions.
The prevention plan is written by the Community Planning Group according to CDC guidelines, which require needs be based on criteria such as epidemiological profiles and needs assessments. The department contracts with various agencies to carry out different parts of the plan.
One health department reported that priorities are sometimes set using data that the state provides but, at other times, are based on anecdotes or other issues that the department values intrinsically. “People believe what they want to believe regardless of the data.”
What additional information would be most helpful to you in planning, implementing, or monitoring HIV prevention programs in your state (or city)?
Would like to see better HIV incidence or prevalence data, STD data, drug use data, and youth behavioral risk data, and more information about the mental health needs and issues of targeted populations.
“Serosurvey information on new infections would be most helpful . . . prevalence information in different populations would be helpful.”
Develop methods to go from research to real-life interventions.
It was noted that there is a strong need for evaluation funds, since funds for evaluation are currently coming from service funds.
Would like to see realistic information on the efficacy of programs.
What additional types of technical assistance does your state (or city) need from the federal government to better support HIV prevention activities?
Would like to see realistic technical assistance on cost-effectiveness.
National conferences should be held (like the one CDC held in August of 1999) in order to bridge the gap between reality and research.
Funds for more collaborative projects involving community based organizations, health departments, and HIV prevention researchers.
Tailored models of intervention (CDC’s top down model of technology transfer is inadequate).
How do you evaluate whether HIV prevention programs in your state (or city) are working?
Review epidemiological data, solicitation of community views and perspectives, assessment of referrals and linkages to care, cost effectiveness, monitor youth behavioral risk data, drug use and behavior (i.e., syringe sharing), and mental health data.
Are there potential new partnerships or alliances that you would like the health departments to pursue related to HIV prevention efforts? What role do you envision these partners having?
Would like to see more money for collaborative projects involving community based organizations (CBOs), health departments, and HIV prevention researchers.
Faith communities to help advance HIV prevention, especially among racial and ethnic minority communities.
Partnerships with HIV/AIDS prevention research centers.
Center for AIDS Prevention Studies, UCSF to strengthen intervention, strategies, technology diffusion, and advance community planning.
What are the most significant barriers that you encounter to planning or implementing effective HIV prevention programs in your state (or city)?
While we know a lot about effective invention strategies, there are still political barriers to implementing these strategies (e.g., needle exchange, condom distribution, comprehensive sex education).
There’s a need for cost-effectiveness data (rating system), national summaries about effectiveness, technical assistance that pays attention to cultural competence, better prevalence/incidence data, and guidance on cost/unit calculations.
There is a lack of a strong federal public health initiative to address the ongoing HIV epidemic.
The ban on use of federal funds for needle-exchange programs hinders ability to reduce HIV infection in IDUs, their sexual partners, and their children.
Lack of capacity (financial, administrative) among community-based organizations is an ongoing problem.
Populations most strongly effected by HIV/AIDS are viewed as expendable.
Confidentiality concerns: there is an eroding of confidentiality protections (e.g., HIV name reporting, trends toward criminalization).
What are the most significant, unrealized opportunities for improved HIV prevention in your state (or city)?
Would like to create more partnerships with academic institutions.
Would like to see more collaboration between prevention programs and care programs for HIV-infected individuals.