Ryan White HIV/AIDS Program Part A Manual

Ryan White HIV/AIDS Program needs assessment is a process of collecting information about the needs of people living with HIV/AIDS (PLWHA)—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 PLWHA, and current resources (Ryan White HIV/AIDS Program and other) available to meet those needs. This information is then analyzed to identify what services are needed and by which groups of PLWHA.

Needs assessment is an interconnected part of other Ryan White 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 data indicatethe current size and characteristics of the populations living with HIV and AIDS as well as trends in the epidemic.

• Needs of PLWHA. Insights on needs can be obtained through co-morbidity and socioeconomic data and such methods as surveys, focus groups, and individual interviews.

• Existing services available to PLWHA.  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 overall and to specific populations. Both the inventory and the provider profile should include core services and support services.

• Unmet needs/service gaps that Ryan White projects should address. Comparing available services to identified needs reveals unmet needs and service gaps (see definitions below). 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 PLWHA populations.

Section 2602(b)(4) of the Ryan White legislation requires Part A planning councils to:

"determine the size and demographics of the population of individuals with HIV/AIDS";

"determine the needs of such populations, with particular attention to:

1. individuals with HIV/AIDS who know their HIV status and are not receiving HIV-related services; and

2. disparities in access and services among affected subpopulations and historically underserved communities."

Section 2602(b)(4)(G) requires the Part A planning council to "establish methods for obtaining input on community needs and priorities which may include public meetings, conducting focus groups, and convening ad-hoc panels."

Part A programs are required to participate in the development of the Statewide Coordinated Statement of Need (SCSN).

Needs assessment data are critical to conducting other planning tasks. Needs assessment results must be reflected in both the planning council's priority setting and resource allocations and in the EMA's/TGA's comprehensive plan. * Planning councils are required to:

• Address coordination with programs for HIV prevention and the prevention and treatment of substance abuse

• Include links with outreach and early intervention services

• Address capacity development needs

• Be closely linked with comprehensive planning and annual implementation plan development, as interconnected parts of an ongoing planning process.

Section 2603(b)(1) specifies that in seeking supplemental funding, the EMA/TGA is expected to include in its application for funding an array of information, including needs assessment data that demonstrate need.  

Section 2603(b)(2)(B) specifies that, in making awards for demonstrated need, the Secretary may consider any or all of the following factors:

1. "The unmet need for such services, as determined under section 2602(b)(4) or other community input process as defined under section 2609(d)(1)(A). 
   
2. An increasing need for HIV/AIDS-related services, including relative rates of increase in the number of cases of HIV/AIDS.
   
3. The relative rates of increase in the number of cases of HIV/AIDS within new or emerging subpopulations.
   
4. The current prevalence of HIV/AIDS. 
   
5. Relevant factors related to the cost and complexity of delivering health care to individuals with HIV/AIDS in the eligible area. 
   
6. The impact of co-morbid factors, including co-occurring conditions, determined relevant by the Secretary.
   
7. The prevalence of homelessness. 
   
8. The prevalence of individuals described under section 2602(b)(2)(M).
   
9. The relevant factors that limit access to health care, including geographic variation, adequacy of health insurance coverage, and language barriers."

Section 2604(e)(2) for Part A permits programs to fund early intervention services (EIS), stating that entities proposing to provide such services may only do so if they demonstrate to the satisfaction of the chief elected official of the EMA/TGA or to the State (1) that Federal, State, or local funds are otherwise inadequate for EIS and (2) that funds spent for EIS will supplement, and not supplant, other funds available to the area for the provision of EIS for the fiscal year. This implies the need to assess the adequacy of existing EIS. If Ryan White funding is to be used, a needs assessment must demonstrate the need for additional EIS services.

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 PLWHA, with emphasis on individuals with HIV/AIDS 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 Part A 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 planning council, grantee, and community.

• Needs assessment is the basis for other Ryan White HIV/AIDS Program planning activities. Assessment plays an important role in the development of an array of services for PLWHA. Ryan White programs 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, with an 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 PLWHA not in care and disparities in care. Most needs assessments have primarily targeted PLWHA who were receiving HIV-related services (individuals already "in care"). The Ryan White HIV/AIDS leigslation requires needs assessments to expand their focus to also determine the needs of those individuals who know their HIV status 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. [Section 2602 (b)(4)(B)(i-ii)]

  • 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, EMAs/TGAs must determine the number and characteristics of subpopulations experiencing disparities in access and services. 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), the planning council and grantee must address capacity development needs. Capacity development funds can only be allocated if they are tied to a specific service category or categories. [Section 2602 (b)(4)(C)(vi)]

  • Address coordination with HIV prevention and substance abuse prevention and treatment. Because Ryan White 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. [Section 2602 (b)(4)(C)(iv)]

  • Identify need for outreach and early intervention services (EIS). The Ryan White legislation allows Part A areas to fund EIS. In order to consider this service for funding, the entity must demonstrate "to the satisfaction of the chief elected official for the eligible area involved that Federal, State, or local funds are otherwise inadequate for the early intervention services that the entity proposed to provide; and the entity will expend funds pursuant to such paragraph to supplement and not supplant other funds available…" These services should be provided at "public health departments, emergency rooms, substance abuse and mental health treatment programs, detoxification centers, detention facilities, clinics regarding sexually transmitted diseases, homeless shelters, HIV/AIDS counseling and testing sites," as well as federally qualified health centers, and other points of access to health services. [Section 2604(e)(1 and 2)]

  • Identify need for outreach based on the EMA/TGA Unmet Need Calculations (number of PLWHA out of care). The planning council should identify specific populations for outreach in order to engage and retain PLWHA in care.

  • Obtain PLWHA input. The Ryan White legislation requires planning councils to determine the size and demographics of individuals living with HIV/AIDS within their EMAs/TGAs and the needs of this population. Planning councils are expected to use 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 Ryan White funds with attention to the needs of PLWHA. Section 2602 (b)(4)(G)

• EMAs/TGAs should establish a needs assessment cycle. Part A 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 planning council overload. HAB/DSS recommends a 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 annually, information on new populations added, and special circumstances—such as the impact of advances in medical treatments on service needs—addressed promptly. The estimate of unmet need should be updated at least every two years.

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

• Epidemiologic profile, which describes the current status of the epidemic in the EMA/TGA, specifically the prevalence of HIV and AIDS overall and among defined subpopulations. The profile should also describe trends in the epidemic. In States without complete and reliable HIV reporting, EMAs/TGAs 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, Centers for Disease Control and Prevention (CDC), and others.

• Assessment of service needs among affected populations, including barriers that prevent PLWHA from receiving needed services. A needs assessment should gather an array of information in order to identify trends and common themes. EMAs/TGAs should collect this information from multiple sources, among them PLWHA and other community members, health departments, the State Medicaid agency, community-based providers and, where applicable, grantees of other Ryan White Parts. 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 PLWHA. 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. (Note: A resource inventory can often be turned into a resource for clients and providers to use in locating services, especially online. In this format, data on clients served and funding levels is usually removed.)

• Profile of provider capacity and capability, which identifies the extent to which services identified in the resource inventory are accessible, available, and appropriate for PLWHA, including specific subpopulations. Estimates of capacity  describe how much of which services a provider can deliver. (Note: Measuring capacity should take into account the ability of providers to serve additional clients, since caseloads may increase as a result of increased attention to HIV testing and linking those testing positive to care—a response to the persistent national challenge that a significant proportion of HIV-infected individuals in the U.S. do not know their status. Assessments of capability describe the degree to which a provider is actually accessible and has the needed expertise to provide services appropriate for specific subpopulations. A careful assessment of barriers to PLWHA receiving services is an important aspect of this component. 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 in the grantee's clinical quality management process.

• Assessment of unmet need/service gaps,  which brings together the quantitative and qualitative data on service needs (including core services and support services), resources, and barriers. This should include an assessment of unmet needs for PLWHA who know their HIV status but are not in care and an assessment of service gaps for all PLWHA—both in and out of care.

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 PLWHA 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.

• 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 Ryan White legislation requires and a sound needs assessment ensures that needs assessment information is sought directly from PLWHA. Locate PLWHA (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 structure a process that allows for an appropriate balance-including information from diverse PLWHA about their perceived service needs.

• What programs and services will be addressed?
  
  You will need to identify what programs and services (core and support) 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 Part A 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 Ryan White HIV/AIDS Program funding? If several titles (or Part A 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 Ryan White HIV/AIDS Program titles, with HIV prevention community planning) be coordinated?
  
  The Ryan White legislation puts a 10% cap on combined grantee and planning council administrative costs, eliminated Program Support funding, and greatly reduced carryover funds. As a result, most Part A programs cannot cover the costs of a comprehensive needs assessment in a single program year. You may want to budget costs over three years, and then do an annual budget based on which components of the needs assessment you will implement or update earch year.

Responsibilities for Conducting and Overseeing the Needs Assessment

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

• Can some parts of the needs assessment be conducted jointly with other Ryan White Parts, 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 council, planning council 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 HIV/AIDS core medical and support services) and how will the consultant's work be monitored? What will be the division of responsibility between the planning council 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 PLWHA 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 be used to help the EMA/TGA determine the "priorities of the communities with HIV for whom the services are intended" (as required by Section 2602(b)(4)(C) of the Act)?

• 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, homeless shelfters, counseling and testing sites, EIS providers, and other community sites 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 Part 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 for the EMA/TGA?

• What tables or narrative information for a Ryan White HIV/AIDS Program 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 Ryan White 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 council, or some combination of volunteers and paid staff. Typically, planning council 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 council and grantee staff will also need to devote time to the needs assessment.

The technical expertise of both Ryan White HIV/AIDS Program and other staff can be particularly helpful, especially in initial planning. Many health departments have staff with extensive needs assessment experience.

Typically, consultants or non-Ryan White staff 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 council "ownership." Whatever process is used, the planning council needs to develop "ownership" of the needs assessment. If consultants or staff are used, they should be seen as the planning council'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 Ryan White 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 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, or exclude other important services or issues.

2. Design the Needs Assessment Methodology

The next step is to develop a specific design for the needs assessment (see Components of a Needs Assessment). Keep in mind that the focus is on identifying the needs of PLWHA in and out of care and the Ryan White and other services currently available to meet those needs. An analysis of this information is then used to help set priorities and allocate resources.

A comprehensive needs assessment must include an epidemiologic profile, an assessment of the service needs of PLWHA 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 PLWHA survey using probability sampling techniques, so that findings can be generalized to the entire population with HIV/AIDS? How will PLWHA 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 PLWHA 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 PLWHA 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 and gaps?

• When, how, and in what form will information be presented?

At the end of the design phase, the grantee and planning council 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 council regularly. The entire planning council 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 PLWHA 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 PLWHA surveys reaching PLWHA who reflect the diversity of the epidemic in the service area? If your EMA/TGA covers several States or a large geographic area, are PLWHA in all areas included?

• Are existing community resources being inventoried and their service capacity determined? For multi-State or large EMA's/TGA's, have resources in all parts of the EMA/TGA been identified and 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 Ryan White 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 the HIV/AIDS Bureau (see TARGET Center website); also contact other EMAs/TGAs, State or local health departments, and Ryan White HIV/AIDS Program-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 Parts.

• Do not assume that findings from a survey represent an entire population (such as all PLWHA in the EMA/TGA) 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; it is a random sample drawn after dividing the population being studied into several subgroups or strata based on specific characteristics. Sub-samples 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 or youth 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 and should not be your primary source of data about PLWHA needs.

• Some planning councils 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. Fears about visibility and negative repercussions may make some PLWHA unwilling to publicly disclose their status or to criticize the continuum of care or discuss barriers affecting access to specific providers. Ryan White HIV/AIDS Program experience suggests that in-depth information about the service needs of PLWHA, especially women, minorities, and other severe need populations, is usually best obtained through other methods, such as focus groups and key informant interviews.

• Client satisfaction surveys are not the same as PLWHA 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 Ryan White HIV/AIDS Program providers.

• Many Ryan White projects 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 PLWHA 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 PLWHA 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.

  • Some planning councils and grantees have been successful in locating PLWHA not in care by working with a wide range of service providers that may not be funded through the Ryan White HIV/AIDS Program but are likely to be providing services to PLWHA. 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.

  • PLWHA caucuses or committees can often help in identifying PLWHA who are not in care.

  • Outreach workers can also conduct brief interviews with PLWHA not in care as part of their ongoing activities.

  • 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 councils and grantees can encourage PLWHA participation in such surveys by providing incentives (such as grocery vouchers) if allowed by their Part or paid for through nonRyan White funds.

  • Media can provide valuable publicity, including public service announcements (PSA's) targeting PLWHA and giving them a voice-mail number to call, with PSA's 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 PLWHA 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 PLWHA 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 Parts, 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. Be sure that representatives of various communities-ideally, planning body members from diverse population groups-see the data very early in the analysis process to check 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 all planning council 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 variation among members in technical background and familiarity with epidemiologic data.

CDC estimates that over 1 million Americans are living with HIV/AIDS, of which 21% do not know it. As such, they are not getting care for their HIV disease. Other estimates suggest that about one-third of those who know their status are not receiving regular HIV-related primary health care.

These data demonstrate the need to get more PLWHA into primary health care. The Ryan White legislation requires assessment of the unmet needs of PLWHA 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 Ryan White HIV/AIDS Program resources focused on early intervention and care delivery to fill gaps in care and away from expansion into such prevention areas as general outreach and HIV counseling and testing for non-infected populations.

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. Most states have name-based HIV reporting. All states collect data on HIV prevalence, but challenges exist around methodologies, reporting delays, and other technical factors, and it takes several years after reporting begins before a State has accurate data on HIV prevalence (living cases).

• 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 and EMA/TGA. Many States and cities have supplemental data available through CDC's Medical Monitoring Project (MMP).

• Need for agreed-upon key questions and "core variables." To address the variability in markers used to measure unmet need in terms of what constitutes being "in care," HAB has provided a standard "operational definition" to be used in the estimate provided in the Part A application each year. This definition was developed because it can be used in every county and state. However, some EMAs/TGAs also use more demanding criteria for internal use.

• Cross-Part issues regarding data collection and data sharing. Ryan White data reporting has been revised to improve comparability and sharing of data across Parts.  However, Part A programs may still face challenges in obtaining information about people receiving primary care or other services through other Ryan White Parts.

• Lack of access to data from non-Ryan White HIV/AIDS Program sources/providers including other Federal agencies. Many people who receive Ryan White HIV/AIDS Program 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 Veterans Affairs. Some PLWHA, including the incarcerated and individuals with both private insurance and relatively high incomes, receive no Ryan White HIV/AIDS Program services. They are in care, but grantees may have no access to data about them. Ryan White HIV/AIDS Program grantees often face great difficulties in obtaining access to primary care data on clients whose medical care is not supported through the Ryan White HIV/AIDS Program, even if the primary care provider receives other funding through the Ryan White HIV/AIDS Program or if the individual obtains medications through ADAP.

• Incomplete laboratory reporting or data entry.  Some States requires all CD4 counts and viral load test results to be reported to and entered into the surveillance system.  In such States, it is relatively straightforward to estimate unmet need.  However, many States require reporting only of CD4 counts below 200 or of detectable viral loads.  In such cases, given the data access issues mentioned above, it is difficult to determine whether people with higher CD4 counts or undetectable viral loads are in or out of care.

• Lack of client-level data.  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 Ryan White.  Lack of client-level data will diminish over time because all Ryan White HIV/AIDS Program grantees are collecting client-level data as of January 2009.)

• 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, 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/AIDS throughout an EMA/TGA. 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 is to compare client data with surveillance data from CDC consumer and provider surveys or to link Medicaid, ADAP, and Ryan White client-level data. However, to match data from different databases is challenging, even if they use common client identifiers, because of differences in definitions, the exclusion of individuals who received anonymous testing, and difficulties with matching and unduplicating clients who may be included in more than one database.

• Confidentiality concerns. Database matching, access to client-level data, and many other aspects of needs assessment may fbe 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-Part data sharing problems and in difficulties in obtaining data on Ryan White clients who receive their primary care from non-Ryan White 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 other data from the CDC with their own surveys of PLWHA, and other special studies of particular populations or geographic areas. This approach typically involves a number of estimations, with the result that estimates may be incomplete or imprecise.

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

• Limited financial and personnel resources. Many EMA's/TGA's have small staffs assigned to Ryan White planning and administration. Planning councils and grantees can budget funds for needs assessment out of their administrative funds.

• Limitations of surveys addressing unmet need. Assessing unmet needs and service gaps of those not in care is more complex than for individuals already in the Ryan White or other public care systems 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 PLWHA are generally feasible only in States with full laboratory reporting, 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 EMA's/TGA's cannot use sampling to project unmet needs for primary health 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 has changed as such methodologies have been developed with support from HRSA/HAB and made available to grantees and planning councils.

* For more information, see the chapters on Priority Setting and Resource Allocation and Comprehensive Planning in this manual. [ Return to Text ]