Chapter 1
Needs Assessment  TOP

Introduction

CARE Act needs assessment is a process of collecting information about the needs of persons living with HIV disease (PLWH)—both those receiving care and those not in care. Steps involve gathering data—from multiple sources—on the number of HIV and AIDS cases, the needs of PLWH, and current resources (CARE Act and other) available to meet those needs. This information is then analyzed to identify what services are needed.

Needs assessment is an interconnected part of other CARE Act planning tasks. Results from the needs assessment should be used in setting priorities for the allocation of funds, developing the comprehensive plan, and crafting the annual implementation plan and specific strategies it outlines for addressing needs. Needs assessment results can also provide baseline data for evaluation and help providers improve services.

Needs assessment steps include identifying:

• Data on HIV Cases and AIDS Cases. HIV/AIDS epidemiologic and other data indicate what populations are living with HIV and AIDS.
• Needs of PLWH. Insights on needs can be obtained through co-morbidity and socio-economic data and such methods as surveys, focus groups, and individual interviews.
• Existing Services Available to PLWH. A resource inventory can show what services and organizations currently exist. An assessment of provider capacity/capability can determine provider ability to deliver HIV/AIDS care. Both the inventory and the provider profile should include such services as HIV prevention, substance abuse prevention and treatment, early intervention services (EIS), and outreach.
• Unmet needs/service gaps that CARE Act programs might address. Comparing available services to identified needs reveals unmet needs and service gaps (see definitions this page). This should include an examination of unmet needs for HIV-positive individuals who know their status but are not in care; service gaps for those who are currently in care; disparities in care; and capacity development needs of providers and the overall system of care. Analysis of unmet needs/service gaps might include not only a determination of overall needs but also identification of particular service needs for specific PLWH populations.

Legislative Background  TOP

Consortia

Section 2613(b)(1)(A-B) states that a consortium’s service plan must address “the special care needs and service needs” of the populations to be served, and must provide an assurance that “populations and subpopulations of individuals and families with HIV disease have been identified by the consortium, particularly those experiencing disparities in access and services and those who reside in historically underserved communities.”

Section 2613(c)(1) requires Title II consortia, in order to receive assistance from the State, to “prepare and submit to the State, an application that [in part]—“

“(B) demonstrates that the consortium has carried out an assessment of service needs within the geographic area to be served….”

[provides] “(iv) assurances that the assessment of service needs and the planning of the delivery of services will include participation by individuals with HIV disease;”

States

Section 2617(b) requires States to prepare applications for funding that contain:

“(2) a determination of the size and demographics of the population of individuals with HIV disease in the State;”

“(3) a determination of the needs of such population, with particular attention to—

(A) individuals with HIV disease who know their HIV status and are not receiving HIV-related services; and

(B) disparities in access and services among affected subpopulations and historically underserved communities;”

“(4) a comprehensive plan that describes the organization and delivery of HIV health care and support services to be funded with assistance received under this part that shall include a description of the purposes for which the State intends to use such assistance, and that—

(A) establishes priorities for the allocation of funds within the State based on—

(i) size and demographics of the population of individuals with HIV disease (as determined under paragraph (2)) and the needs of such population (as determined under paragraph (3));
(ii) availability of other governmental and non-governmental resources, including the State medicaid plan under title XIX of the Social Security Act and the State Children’s Health Insurance Program under title XXI of such Act to cover health care costs of eligible individuals and families with HIV disease;
(iii) capacity development needs resulting from disparities in the availability of HIV-related services in historically underserved communities and rural communities; and
(iv) the efficiency of the administrative mechanism of the State for rapidly allocating funds to the areas of greatest need within the State;

(B) includes a strategy for identifying individuals who know their HIV status and are not receiving such services and for informing the individuals of and enabling the individuals to utilize the services, giving particular attention to eliminating disparities in access and services among affected subpopulations and historically underserved communities, and including discrete goals, a timetable, and an appropriate allocation of funds;

(C) includes a strategy to coordinate the provision of such services with programs for HIV prevention (including outreach and early intervention) and for the prevention and treatment of substance abuse (including programs that provide comprehensive treatment services for such abuse);”

HAB/DSS Expectations  TOP

The CARE Act Amendments of 2000 place increased emphasis on needs assessment, particularly for Title I and Title II programs. Needs assessment is expected to generate information about:

• The size and demographics of the HIV/AIDS population within the service area, and
• The needs of PLWH, with emphasis on individuals with HIV disease who know their HIV status and are not receiving primary health care, and on disparities in access and services among affected subpopulations and historically underserved communities.

HAB/DSS expects Title I and Title II needs assessments to meet all legislative requirements and to provide a sound information base for planning and decision-making.

Planning bodies and grantees are expected to apply the following principles and strategies in their needs assessment efforts:

• Needs assessment is a partnership activity of the State, its consortia, and community.
• Needs assessment is the basis for other CARE Act planning activities. The CARE Act recognizes the role of needs assessment in developing an array of services for PLWH. Other CARE Act planning tasks use its results to help prioritize service needs and allocate funds, develop a comprehensive plan, and craft strategies to address these needs through the implementation plan.
• Needs assessments focus on particular areas of need, as outlined in the CARE Act with its emphasis on reaching those not in care, identifying disparities in care, and identifying ways to enhance the service delivery system. Areas for attention are as follows:
  • Focus on PLWH not in care and disparities in care. Most needs assessments have primarily targeted PLWH who were receiving HIV-related services (individuals already “in care”). The CARE Act of 2000 requires needs assessments to expand their focus and also determine the needs of those individuals who know their status but are but are not in care. Particular attention must also be paid to identifying disparities in access and services among affected subpopulations and historically underserved communities.
  • Identify capacity development needs. Capacity development needs exist when disparities in the availability of HIV-related services are identified, particularly in historically underserved communities. In planning for capacity development, the number and characteristics of subpopulations experiencing disparities in access and services is determined. If the needs assessment identifies gaps in its ability to reach and address the needs of underserved populations or communities (e.g., insufficient access points, cultural or language barriers), capacity development activities must be prioritized.
  • Address coordination with HIV prevention and substance abuse prevention and treatment. Because CARE Act resources are only one source of HIV/AIDS care, needs assessments should identify where coordination across services is needed. Of particular importance is coordination with HIV prevention and with substance abuse prevention and treatment programs, including programs that provide comprehensive substance abuse treatment. Coordination with these services can enhance efforts to identify individuals with HIV who know their status but are not receiving primary health care, provide risk reduction services to these individuals, enable them to access and remain in care, and result in better attention to the full range of their needs.
  • Identify need for outreach and early intervention services (EIS). The CARE Act allows Title II areas to fund outreach and EIS. In order to consider these service categories for funding, the needs assessment’s resource inventory and other assessment tasks must identify the need for such services. Relatedly, they must also identify points of entry into care, identify any gaps in services for those not in care, and determine how best to fill these gaps. Points of entry are particularly important because they are places where individuals who know their HIV status but are not in care may be found.
  • Obtain PLWH input. The CARE Act requires States to determine the size and demographics of individuals living with HIV disease within their areas and the needs of this population. States and consortia are expected to establish methods such as public meetings, focus groups, and ad hoc panels for obtaining input on community need and priorities. Such input enables them to fulfill the legislative requirement to establish priorities for the allocation of CARE Act funds with attention to the needs of PLWH.
  • States should establish a needs assessment cycle. Title II areas are not expected to conduct a comprehensive needs assessment each year. The effort is extremely time consuming and can lead to “consumer fatigue” as well as grantee and consortia overload. HAB/DSS recommends a two- or three-year needs assessment cycle, with a schedule for collecting updated information to address special areas and support priority-setting and resource-allocation activities. Epidemiologic data should be obtained and reviewed annually, information on new populations added, and special circumstances—such as the impact of advances in medical treatments on service needs—addressed promptly.

Components of a Needs Assessment

A comprehensive needs assessment includes several specific components. On an annual basis, specific components of the needs assessment should be expanded and/or updated, depending on trends and special issues facing the Title II area. The major components of a comprehensive needs assessment are:

• Epidemiologic profile, which describes the current status of the epidemic, specifically the prevalence of HIV and AIDS overall and among defined subpopulations. The profile should also describe trends in the epidemic. In States without HIV reporting, areas should determine the number of individuals living with HIV by using epidemiologic measures developed by the U.S. Department of Health and Human Services (HHS) through HRSA/HAB, CDC, and others.
• Assessment of service needs among affected populations, including barriers that prevent PLWH from receiving needed services. A needs assessment should gather an array of information in order to identify trends and common themes. This information should be collected from multiple sources, among them PLWH and other community members, health departments, the State Medicaid agency, community-based providers and, where applicable, grantees of other CARE Act titles. Information must be obtained from and about HIV-positive individuals who know their status and are not in care.
• Resource inventory, which describes organizations and individuals providing the full spectrum of services accessible to PLWH in the service area.. The goal of the resource inventory is to develop a comprehensive picture of services, regardless of funding source. At a minimum, the resource inventory includes for each provider a description of the types of services provided, number of clients served, and funding levels and sources.
• Profile of provider capacity and capability, which identifies the extent to which services identified in the resource inventory are accessible, available, and appropriate for PLWH, including specific subpopulations. Estimates of capacity describe how much of which services a provider can deliver. Assessments of capability describe the degree to which a provider is actually accessible and has the needed expertise to provide services. A careful assessment of barriers to PLWH receiving services is an important aspect of this component (i.e., the profile should inquire from PLWH directly or service providers the barriers faced in accessing services). Some provider profiles will also explore client perceptions of service quality and appropriateness. However, assessment of client satisfaction is a complex effort that may also be undertaken thoroughly in the quality improvement process.
• Assessment of unmet need/service gaps, which brings together the quantitative and qualitative data on service needs, resources, and barriers to help set priorities and allocate resources. This should include an assessment of the unmet need for PLWH who know their HIV status but are not in care and an assessment of service gaps for all PLWH—both in and out of care.

The Needs Assessment Process  TOP

A needs assessment sets the stage for the planning process by identifying the needs of the community, the services available to meet those needs, and the gaps between needs and services. This is a meaningful exercise only if it is planned carefully.

To develop a needs assessment in a timely and efficient manner, begin by outlining a needs assessment process. The typical steps in needs assessments are as follows:

1. Plan for the needs assessment
2. Design the needs assessment methodology
3. Collect the information required for the needs assessment
4. Analyze the information and present the results in useful formats.

Each of these steps is summarized below. (Please refer to the Needs Assessment Guide for detailed information that will help guide you through needs assessment design and implementation.)

1. Plan for the Needs Assessment

The first step is to reach consensus on the scope, timetable, budget, and responsibilities for the needs assessment.

Scope

Decide on needs assessment scope by posing and answering the following questions:

• What is the desired scope of the needs assessment? Will this be a comprehensive needs assessment or an update of some part of an existing needs assessment (e.g., the epidemiologic profile)? What programs and services will be addressed? Are there any special issues that should be considered (e.g., enrollment of Medicaid-eligible PLWH in managed care plans)?

  Once you have completed a needs assessment that meets legislative requirements and local planning needs, your needs assessment efforts each year can focus on updating or expanding particular components of the assessment.

• Whose needs are being assessed and what information will be sought about each of these populations? Based upon the epidemiologic profile for the area, what target populations are essential for the assessment?

  Develop a clear understanding about whose needs are being assessed. You cannot make decisions about service needs of specific populations (e.g., women, Latinos, gay men of color) unless information about these groups is an integral part of the needs assessment.

  Be sure that information can be presented separately for important population groups or geographic areas as well as combined to give an overall picture of your service area. The analysis should present, compare, and contrast all components of the entire service population. This is important if you plan to set priorities separately for distinct areas or population groups. For example, you may need information about injection drug users (IDUs) to develop a sense of the need for substance abuse treatment services. HRSA has identified the following populations which, at a minimum, should be analyzed in terms of their specific needs: white non-Hispanic men who have sex with men, men of color who have sex with men, women of child-bearing age, adolescents, injecting drug users, and other substance users.

• Who are the target populations for your assessment?

  Knowing whom to target can present challenges. Many areas make the mistake of targeting providers as the primary source of needs data. The assumption here is that providers have intimate knowledge of their clients’ needs. While this may be true, the priorities of providers may be different from the priorities of their clients. Providers also may be less knowledgeable about the needs of populations not in their care system.

  The CARE Act requires and a sound needs assessment ensures that needs assessment information is sought directly from PLWH. Start with the needs of PLWH (in and out of care) and ask them about their needs. Also give weight to provide perspectives since they are part of the solution. The challenge and goal is to structuring a process that allows for an appropriate balance—including information from diverse PLWH about their perceived service needs.

• What programs and services will be addressed?

  You will need to know what programs and services should be addressed. It may be helpful to use focus groups to determine the scope of priorities your community will consider in the process. Developing a resource inventory will also help point to service areas that may need particular attention.

• What specific tables or narrative information for the comprehensive plan or for your Title II application must be developed based on needs assessment data? Does the latest HAB/DSS application guidance call for new tables or additional information or analyses?

Timetable and Budget

Determine the timeline and budget by addressing the following questions:

• What is the timetable for the needs assessment? What are the deadlines for specific tasks such as collection of information, analysis of data, and preparation of the needs assessment report? By what date must the planning or decision-making body that will use needs assessment receive the report in order to allow time for review of information and use of results in priority setting and resource allocation, planning, and/or preparation of an application for CARE Act funding? If several titles (or Title II and the HIV Prevention Community Planning Group) are collaborating, what are the differing timetables and how can they all be met?
• What is the budget for the needs assessment? Are funds available for a consultant? What in-kind resources can be used, such as assistance in conducting interviews or focus groups from staff of local agencies or university students, or assistance in data analysis from the health department or another agency? How can joint funding (e.g., across CARE Act titles, with HIV prevention community planning) be coordinated?

Responsibilities for Conducting and Overseeing the Needs Assessment

Agree on responsibilities for conducting and overseeing the needs assessment by posing the following questions:

• Can the needs assessment be conducted jointly with other CARE Act titles, and/or the HIV Prevention Community Planning Group? If so, how can funds and efforts best be pooled?
• Who will conduct and monitor the needs assessment? Will it be conducted and overseen by the planning body, staff, a needs assessment committee, a consultant, or some combination of volunteers and paid staff? If a consultant is to be used, what criteria will be used to select the consultant (e.g., social science research background, experience with community needs assessment, understanding of AIDS primary care and support services) and how will the consultant’s work be monitored? What will be the division of responsibility between the planning body and the grantee or administrative agency?

Obtaining Community Input

Establish a process for community input by posing the following questions:

• What procedures will be used to obtain broad PLWH and other community input from individuals who are not part of the planning council or needs assessment committee? What additional efforts are needed to help ensure that the needs assessment results will be accepted by the community?
• How will the needs assessment reach and obtain input from HIV-positive individuals who know their status but are not in care? What links with prevention programs, substance abuse treatment programs, counseling and testing sites, and other EIS providers will help in reaching these individuals?

Analysis, Presentation, and Use of Results

Look ahead to what will be done once results are obtained by addressing the following questions:

• If this is a collaborative needs assessment, how will the specific information needed by each title or program be analyzed and presented? Will separate reports be required?
• How will the results be linked to and supportive of the development of a comprehensive plan?
• What tables or narrative information for a CARE Act application must be developed based on needs assessment data? Does the latest HAB application guidance call for new tables or additional information or analyses?
• How else will needs assessment results be used? For example, what information is most critical for priority setting? What separate analyses are needed by population group, transmission category, service category, and/or geographic area? How can results best be presented so they are easy to use?

Hints for Managing the Needs Assessment Process

Conducting a needs assessment in an organized manner entails assigning responsibility for both implementation and monitoring of the data collection and analysis process. The experiences of CARE Act planning bodies and grantees suggest different ways to divide responsibilities.

“Staffing” the needs assessment. The needs assessment may be conducted and overseen by a needs assessment committee, staff, a consultant, the full planning body, or some combination of volunteers and paid staff. Often, planning body members or other volunteers will not carry out a comprehensive needs assessment themselves. They may lack the needed time and/or expertise. At a minimum, they can and should provide oversight, arrange community forums, and ensure that all affected populations are reached and included in the needs assessment process. Some members may be able to help with specific activities such as client focus groups or outreach to people not in care. Planning body and grantee staff will also need to devote time to the needs assessment. The technical expertise of both CARE Act and other staff can be particularly helpful, especially in initial planning. Many health departments have staff with needs assessment experience. Typically, consultants will be needed to work with the needs assessment committee or staff in planning and implementing the needs assessment. Sometimes university researchers will help with the process at low-cost or pro bono, perhaps making the needs assessment a student project.

Planning body “ownership.” Whatever process is used, the planning body needs to develop “ownership” of the needs assessment. If consultants or staff are used, they should be seen as the planning body’s representatives. Consumers will feel ownership if they play a substantive role in the needs assessment process, if the report or an executive summary is widely disseminated, and if other planning council members acknowledge their contributions.

Dealing with conflict of interest. Responsibility for implementing a needs assessment process entails recognizing and managing conflict of interest. Be sure that the committee or task force reviewing the needs assessment tool and overseeing the needs assessment process is broadly representative and balanced. Include individuals knowledgeable about the range of CARE Act services, so that no one individual or group has control of questionnaire design or data analysis. Be aware of the possibility of unintended biases. For example, a clinic director is likely to focus on the information about primary health care needs, a substance abuse provider on the need for drug treatment, and a gay rights organization on the needs of gay men. Have a neutral party design, or at least carefully review, all instruments to be sure that individuals do not overemphasize a particular service need or approach that may be of special interest to their organization or reflect their personal priorities.

2. Design the Needs Assessment Methodology

The next step is to develop a specific design for the needs assessment. Keep in mind that the focus is on identifying the needs of PLWH in and out of care and the CARE Act and other services currently available to meet those needs.

If a comprehensive needs assessment is planned, it must include an epidemiologic profile, an assessment of the service needs of PLWH in and out of care, a resource inventory, an assessment of the capacity and capability of service providers, and an assessment of unmet needs/service gaps. The needs assessment should also generate information needed to develop the comprehensive plan and information requested in the program’s grant application. If an existing needs assessment is to be updated, more limited information may be required, but a review of the most recent epidemiologic data will always be required.

The needs assessment methodology may be designed by a needs assessment committee, staff, or consultants (paid or volunteer) with committee oversight. Representatives of affected communities should be invited to review the design of the needs assessment. Focus on the following questions:

• What existing information (secondary source data) is available? What populations does it address or not address? Have the grantee, planning body, and/or individual providers carried out epidemiologic studies, client satisfaction studies, or evaluations that can contribute to the needs assessment?
• What new information (primary source data) is needed and what approaches are planned to collect this information? Will there be a PLWH survey using probability sampling techniques so that findings can be generalized to the entire population with HIV disease? How will PLWH not in care be identified and included? Will providers of HIV/AIDS-related services be surveyed to obtain their perceptions of need as well as information about the service network and its capacity and capability? Will qualitative information be obtained from specific PLWH groups, providers, or other target groups through such methods as focus groups, community forums, or key informant interviews?
• Who will develop and review the instruments for collecting new information? Can tools from others be used or refined?
• What common set of questions should be asked so that responses can be compared across sources in order to identify trends or themes?
• Who will collect the new information, and how will these people be trained?
• How will confidentiality be protected? Will PLWH be able to participate anonymously?
• How will quality control be maintained? What procedures will be used to ensure that findings are valid and activities are completed on time? How will data collection staff be monitored to ensure that information is collected appropriately? Has time been built in to revise data collection instruments based on pilot test results? Who will monitor expenditures and completion of tasks?
• How will data be analyzed? How will quantitative and qualitative information be integrated? How will data be analyzed according to desired data characteristics—such as by populations or services—and how will quantitative and qualitative data be compared and interpreted in order to gain a deeper understanding of service needs?
• When, how, and in what form will information be presented?

At the end of the design phase, the grantee and planning body should have a clear plan for every part of the needs assessment process, including the kinds of information that will be available and the kinds of analysis that will be done.

3. Collect the Information Required for the Needs Assessment

The required information must be collected—quantitative and qualitative, primary and secondary, analyzed and in “raw” (not aggregated) form. The data collection should follow the procedures determined during the design phase.

Be sure that those responsible for data collection consult with the committee and the full planning body regularly. The entire planning body should hear progress reports from this group during any major needs assessment effort. In overseeing the information collection process, be sure to consider questions and issues such as the following:

• Is comprehensive information about the present extent, distribution, and impact of HIV/AIDS on defined populations being obtained and analyzed?
• Are the needs of PLWH in and out of care being assessed, by contacting them directly or through other methods? Is there a specific plan for identifying and assessing the needs of individuals who know their HIV status but are not receiving primary health care? Are PLWH surveys reaching PLWH who reflect the diversity of the epidemic in the service area? If your area covers a large geographic area, have PLWH in all areas been included?
• Are existing community resources being inventoried and their service capacity determined? For States and multi-State or large EMAs, have resources in all parts of the service area been inventoried?
• Has there been careful quality control of the entire information collection process?

Hints for Successful Data Collection

The following are insights gained by various CARE Act planning bodies and grantees through experiences conducting needs assessment data collection activities.

• Obtain copies of survey instruments and methodologies used by others rather than “starting from scratch.” Some resources are available from HABAHhhh; also contact other State or local health departments and CARE Act-funded providers.
• In developing data collection tools, use consistent terminology to describe service categories, using the services defined in the HAB/DSS application guidances. This will maximize the usefulness of surveys and allow for comparisons across geographic areas and titles.
• Do not assume that findings from a survey represent an entire population (such as all PLWH in the area) unless the methodology uses a random or probability sample—a sample in which every member of the population being sampled has an equal probability of being included. A stratified random sample may be required in order to generalize findings to subpopulations; this is a random sample drawn after dividing the population being studied into several subgroups or strata based on specific characteristics. Subsamples are then drawn separately from each of the strata. For example, the population might be stratified by race/ethnicity before random sampling.
• Focus groups can provide valuable qualitative information from specific groups (e.g., why women of color do and do not access care). Findings can be used to determine key questions for surveys or to look more in-depth at survey results. However, this information does not necessarily represent the views of the entire subpopulation.
• Some planning bodies and grantees believe that open meetings such as community forums and public hearings have limited value as a source of consumer perspectives on service needs for a care-focused needs assessment. While open meetings have been valuable in prevention needs assessments, concern about visibility and fear of negative repercussions may make some PLWH unwilling to publicly disclose their status or to criticize the continuum of care or discuss barriers affecting access to specific providers. CARE Act experience suggests that the service needs of people living with HIV disease, especially women, minorities, and other severe need populations, are usually best obtained through other methods, such as focus groups and key informant interviews.
• Client satisfaction surveys are not the same as PLWH needs assessment surveys. A client satisfaction survey may focus on the perceived quality of services received. A needs assessment survey should ask about an individual’s met needs and unmet needs/service gaps and priorities; it may also ask about client satisfaction with current services, but this is not its primary purpose. A limitation of client satisfaction surveys is that they reach only those already receiving services from CARE Act providers.
• Many CARE Act programs have found that providing needs assessment survey forms at a provider site can influence the information provided, especially if the completed surveys are left at the site where staff may see them. Sometimes there is a perception that the survey will not be anonymous, and clients may fill out the form in a way that reflects perceived provider needs and priorities rather than those of the client. For these reasons, it is very important that needs assessment surveys be administered or provided to PLWH at locations other than provider sites and/or by a researcher not associated with the provider. Anonymity also needs to be ensured by having the survey either given to that external person or mailed back to a central location unassociated with the provider.
• Surveys of PLWH should target both those currently receiving care from funded providers and individuals who are not receiving HIV-related services. Their service needs may be quite different from those of current clients. Individuals not in care are often more difficult to reach than current clients and need to be sought out at a variety of locations, using a mix of street, service provider, and media outreach techniques, as described below. (For more guidance on identifying and assessing the needs of PLWH who are not in care, see the Needs Assessment Guide.)
  • Some planning bodies and grantees have been very successful in locating PLWH not in care by working with a wide range of service providers that may not be funded through the CARE Act but are likely to be providing services to PLWH. They include public and private clinics, substance abuse treatment programs, maternal and child health programs, mental health programs, and runaway and homeless shelters. Many of these are considered “points of access” into care, and some provide early intervention services. Often, the most effective way to identify such individuals and assess their service needs is to look for them and obtain this information on a continuing basis throughout the year, then aggregate and analyze the information quarterly.
  • Planning bodies and grantees can encourage PLWH participation in such surveys by providing incentives if allowed by their title.
  • Media can provide valuable publicity, including public service announcements (PSAs) targeting PLWH and giving them a voice-mail number to call, with PSAs in several languages and special telephone numbers for Spanish- or other limited-English speakers as needed. Use of appropriate community newspapers, newsletters, and/or radio stations can help in reaching specific target populations. Involving people from these communities is an important way to identify where and how PLWH from targeted communities can be reached.

4. Analyze the Information and Present the Results in Useful Formats

Information tabulation and analysis should focus on answering the major needs assessment questions. The process should also include organizing information and analyzing it (as collected from multiple sources) in order to identify key needs, trends, and critical issues. The results of the analysis must then be presented in narrative and/or chart form for use in priority setting, resource allocation, and developing the comprehensive plan. Usually, this is a multi-stage process, requiring at least the following activities:

• Catalogue or otherwise order information, including secondary source materials, by topic and subcategory (e.g., data on people living with HIV and AIDS overall, by race/ethnicity, and by mode of transmission, individuals receiving primary medical care and those not in care). In carrying out this process, be specific about what information was obtained and from what populations, to prevent attempts to generalize findings to populations that were not surveyed using probability sampling.
• Tabulate primary source data into useful data tables or qualitative information summaries.
• If multiple or different analyses are to be done for different titles, prepare for these differing analyses.
• Analyze the information—compare and contrast information by population group (e.g., gender, race/ethnicity), geography (e.g., zip code), or other characteristics of interest. Compare the reported service needs of individuals in care and out of care.
• Prepare summaries, tables, and charts that are clear and easily understood.

Ensure that tabulations and comparisons of quantitative and qualitative data match the analyses you wish to undertake and present results in the format you desire. Do not apply findings to populations that were not surveyed or were minimally represented in the needs assessment process. Ensure that representatives of various communities—ideally, planning body members from diverse population groups—see the data very early in the analysis process to verify the accuracy of assumptions and interpretations.

Be sure that findings are presented in a format and level of detail that is understandable and useful for planning body members, funders, and others in the community who will be using the results. Make sure information can be readily used in priority setting and resource allocation. Consider variations among individuals in terms of technical background and familiarity with epidemiologic data.

Assessing Unmet Need  TOP

The Centers for Disease Control and Prevention (CDC) estimates that 850,000 to 950,000 Americans are HIV-positive. Analyses based on national surveillance data suggest that about 670,000 Americans know they are infected, while another 180,000 to 280,000 have the virus but do not know it. About one-third of those who know their status (an estimated 233,000) are not receiving regular HIV-related primary health care. * 

These data demonstrate the need to refocus efforts to get more PLWH into primary health care. The CARE Act Amendments of 2000 require assessment of the unmet needs of PLWH who “know their HIV status and are not receiving HIV-related services,” particularly those from “disproportionately affected and historically underserved populations.” This targeting is intended to keep CARE Act resources focused on early intervention and care delivery and away from expansion into such prevention areas as general outreach and HIV counseling and testing for non-infected populations.

Research shows that access to quality HIV-related primary health care has improved as a result of the CARE Act, but that some PLWH populations are less likely to be receiving such care. Targeting their needs requires assessment of unmet need so programs can better understand who is not in care and why. Information about unmet need might assess PLWH not receiving primary health care and their geographic location, race/ethnicity, gender, mode of transmission, unmet service needs, and why they are not receiving care. Such data can be used to craft strategies to overcome service barriers and get individuals into care.

Definitions of Unmet Need and Service Gaps

Unmet need means the unmet need for health services among individuals who know their HIV status but are not receiving primary health care (not “in care”).

Service gaps are all service needs not currently being met for all PLWH except for the need for primary health care for individuals who know their status but are not in care. Service gaps include additional need for primary health care for those already receiving primary medical care (“in care”).

A person is considered to be in care if receiving primary medical care (medical evaluation and clinical care) that meets Public Health Service guidelines

To avoid confusion, the term unmet need will be used only to denote the need for primary health care by PLWH not in care, and service gaps will be used in all other service needs.

Grantees and planning bodies do not need a whole different needs assessment methodology to assess the unmet needs of individuals who know their status but are not receiving primary health care. Assessing unmet need should be a part of the overall comprehensive needs assessment conducted in each service area. However, it does require the challenging and time-consuming process of finding and determining the needs of PLWH not in care. Research suggests that such individuals are likely to be members of traditionally underserved populations and may be among those with the greatest need for and dependence on CARE Act services.

The role of unmet need in the needs assessment and planning process is shown graphically below.

Considerations in Estimating Unmet Need

HRSA/HAB efforts to develop methods for estimating unmet need/service gaps are ongoing. In particular, they focus on unmet needs for HIV-related primary care services by PLWH who are aware of their status but are not receiving care. Following are methodological considerations:

Capacity. HRSA/HAB recognizes that the assessment of unmet need/service gaps is a complicated process. It requires the capacity to compile data from multiple sources, combine quantitative and qualitative data, and translate information for use in planning.

Data Limitations. Limitations in data availability and access to existing databases include the following:

• HIV reporting. The total number of individuals who are HIV-positive and know their status is the starting point for estimating unmet need for this population. HIV-reporting States have these data, although concerns may exist about data completeness. As of March 2002, CDC HIV/AIDS Surveillance Reports were providing HIV cases for 34 States. Nearly all States have begun to collect data on HIV prevalence in some form, but challenges exist around methodologies, reporting delays, and other technical factors. CDC provides estimates of HIV prevalence for jurisdictions in non-reporting States, but the range of cases is often quite large. In making estimates, jurisdictions sometimes take the midpoint of the CDC estimate (e.g., if the estimate is 4,500 to 10,500 people living with HIV that has not progressed to AIDS, the midpoint estimate is 7,500 people).
• Limitations of surveillance data/databases. CDC surveillance data provide information from all States about reported AIDS cases and deaths, as well as information on HIV from reporting States and facilities. However, available data vary by State. In some locations, supplemental surveillance databases provide additional information about people with HIV, but these databases typically cover limited numbers of States, cities, and health care facilities.
• Lack of agreed-upon key questions and “core variables.” There may be variability in markers used to “operationalize” and measure unmet need in terms of “not in care,” such as what constitutes being “in primary care” (e.g., tests such as CD4 counts or viral load, primary care visits during a specified period, medications prescribed, behavioral indicators and other variables). Variations also may exist on measures of late diagnosis, late entry into care, etc. The lack of a set of common questions or “core variables” means that every grantee has the responsibility of defining and choosing its own variables, which limits efforts to compare data across EMAs or States.
• Cross-title issues regarding data collection and data sharing. The new cross-title CARE Act Data Report (CADR) should improve comparability and facilitate sharing of data across titles. However, Title II programs may still face challenges in obtaining information about people receiving primary care or other services through other CARE Act titles. For example, providers with only Title III or Title IV funds may not share information with Title I grantees about clients receiving primary care through these titles.
• Lack of access to data from non-CARE Act sources/providers including other Federal agencies. Many people who receive CARE Act services obtain their primary care from other sources and/or through providers using other funding, such as Medicaid and Medicare, private physicians, health maintenance organizations (HMOs), or the Veterans Administration. Some PLWH, including the incarcerated and individuals with both private insurance and relatively high incomes, receive no CARE Act services. They are in care, but grantees may have no access to data about them. CARE Act grantees often face great difficulties in obtaining access to primary care data on clients whose medical care is not supported through the CARE Act, even if the primary care provider receives other funding through the CARE Act or if the individual obtains medications through ADAP.
• Lack of client-level databases. A client-level database greatly facilitates efforts to estimate and assess unmet need/service gaps. It provides a unique client identifier and the ability to determine the unduplicated number of clients receiving primary care and other specific services through the CARE Act.
• Non-generalizable data. Because surveillance data are often incomplete and a variety of data sources must generally be used to estimate and assess unmet need/service gaps, grantees typically are not able to base their estimates on random samples of defined populations. Sometimes, estimates are drawn from non-random samples of individuals with HIV disease throughout an EMA. Sometimes they are based on estimates of the size of the HIV population within a larger population of unknown size, such as the population of men who have sex with men in a specific geographic area. As a result, such estimates are not statistically reliable.
• Problems in matching data from different databases. One way to estimate unmet need/service gaps is to compare client data with surveillance data from CDC consumer and provider surveys or to link Medicaid, ADAP, and CARE Act client-level data. However, to match data from different databases is challenging, even if they use common client identifiers, because of differences in definitions of what constitutes being “in care,” the exclusion of individuals who received anonymous testing, and difficulties with matching and unduplicating clients.
• Confidentiality concerns. Database matching, access to client-level data, and many other aspects of needs assessment may be complicated by concerns about client confidentiality. The U.S. Department of Health and Human Services (HHS) has provided considerable guidance with regard to client confidentiality and the disclosure of client data for reporting and evaluation purposes. However, some providers are unwilling to provide access to any information that might permit client identification, despite these protections. Sharing of data is complicated by the requirements of the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which includes new security standards protecting the confidentiality and integrity of "individually identifiable health information," past, present or future. Confidentiality is often a factor in cross-title data sharing problems and in difficulties in obtaining data on CARE Act clients who receive their primary care from non-CARE Act-funded sources.

Use of Multiple Data Sets. Given data limitations, many grantees estimate and assess need by using information from multiple data sources. They may, for example, combine general surveillance data on HIV and AIDS cases and mortality with data from the HIV/AIDS Reporting System (HARS) special studies (which may cover only a portion of their geographic service area), their own surveys of PLWH, and other special studies of particular populations or geographic areas. This approach typically involves a number of estimations, with the result that estimates may indicate a less precise “level of magnitude” of need (e.g., “a large majority” or “at least two-thirds” of PLWH are in care) rather than numerical estimates of unmet need/service gaps.

Resource Limitations. Grantees and providers often have financial and personnel limitations in documenting unmet need/service gaps, as follows.

• Limited financial and personnel resources. Many States have small staffs assigned to CARE Act planning and administration. Needs assessment can be prioritized as a Program Support function, but this means taking funds from services.
• Limitations of surveys addressing unmet need. Assessing unmet need of those not in care is more complex than doing so for individuals already in the CARE Act system because out-of-care individuals are difficult to find. Locating such individuals requires, for example, coordinating with HIV counseling and testing facilities and using outreach workers to link with providers of services other than direct HIV/AIDS services. Such other services might include homeless shelters and drug treatment facilities. Surveys based on random samples drawn from the population of persons living with HIV disease are generally feasible only in reporting States, through links with the CDC surveillance system. Without such links, it is difficult to use probability sampling. (Probability sampling gives every person in the population a known chance of being included in the sample and makes it possible to generalize from the sample to the total population.) This means that States cannot project unmet needs for primary care or other services for an entire HIV population. Even with access to HIV case data, grantees may lack the resources to conduct such large-scale surveys.
• Burden of developing methodologies. Assessing unmet need has been especially difficult because of the lack of recommended methodologies, agreed-upon definitions, or agreed-upon “core variables.” This situation will change as such methodologies are developed with the support from HRSA/HAB and made available to grantees and planning bodies.

Assistance to Grantees and Planning Bodies  TOP

HRSA/HAB assistance on assessing unmet need/service gaps includes the following:

Written Materials

• Needs Assessment Guide, updated with additional guidance on meeting new legislative requirements for needs assessment and assessing unmet need.
• Framework for Measuring Unmet Need for HIV Primary Medical Care, prepared by the Institute for Health Policy Studies, University of California San Francisco, 2002.
• Integrated Guidelines for Developing Epidemiologic Profiles for HIV Prevention and Ryan White CARE Act Community Planning, prepared by HRSA and CDC.
• TA Library curriculum materials and trainer guides that can be used by EMAs to prepare staff, planning council members, and consultants to assess unmet need/service gaps.
• Self-Assessment Module (SAM) on Needs Assessment for planning councils and grantees to use in evaluating their own needs assessment activities.

Models and Methodologies

Building on work arranged by HRSA/HAB, efforts include:

• A probability framework and accompanying guide to estimate the number of individuals in the EMA who know their status but are not receiving HIV-related primary care.
• Summary materials outlining various models and methods used to estimate unmet need/service gaps.
• A “how-to” guide on using methodologies for estimating the level of unmet need/service gaps among specific populations and in particular geographic areas, including qualitative and quantitative approaches.

Training and On-site Assistance

Assistance is available through on-site technical services available through HAB’s Technical Assistance Contract, which will provide:

• Regional training on how to use methodologies for estimating unmet need/service gaps and improving overall needs assessment activities.
• Individualized on-site assistance from consultants who have been trained by HAB/HRSA on estimating unmet need/service gaps.
• Individualized telephone and e-mail advice.

For assistance, areas should contact their project officers. As new materials are developed, project officers receive training and information that they then share with grantees.

References  TOP

Fleming, P., Byers, R., Sweeney, P., Daniels, D., Karon, J., Janssen, R. “HIV Prevalence in the United States, 2000.” Presentation by CDC surveillance staff at the Ninth Conference on Retroviruses and Opportunistic Infections, Seattle, Washington, February 2002. Abstract available online.

Health Resources and Services Administration (HRSA), HIV/AIDS Bureau (HAB).
Needs Assessment Guide. Rockville, MD: U.S. Department of Health and Human Services, 2002.

HRSA, HIV/AIDS Bureau. Framework for Measuring Unmet Need for HIV Primary Medical Care. Rockville, MD: U.S. Department of Health and Human Services, 2002.

HRSA, HAB. “Needs Assessment.” CARE Act National TA Call Report, Rockville, MD: U.S. Department of Health and Human Services, 1996.

HRSA, HAB. Unmet Need Consultation Report, 2000.

HIPAA Primer, prepared by the HIPAA (Health Insurance Portability and Accountability Act) Advisory Committee, Phoenix Health Care Systems. Available on their web site.

*These statistics were presented by CDC officials at the Ninth Conference on Retroviruses and Opportunistic Infections in Seattle in February 2002, based on projections using national surveillance data. < Return to Text >