Estimating Unmet Need: Frequently Asked Questions (FAQs)

Author(s): Abt AssociatesHRSA HIV/AIDS Bureau (HAB)

Answers to common questions about Estimating Unmet Need. These FAQs have been generated in response to questions from RWHAP recipients who attended webinars and/or received TA on Estimating Unmet Need. 

Updated Unmet Need Methodology Overview

In the years since the original Unmet Need methodology was put in place, the treatment of HIV disease has changed significantly due to the effectiveness of antiretroviral treatment (ART).  In addition, the availability and quality of data used to estimate unmet need have improved. Given this, HRSA HAB began exploring ways to more effectively estimate unmet need—meeting both the legislative requirements and providing a better tool that jurisdictions can use to identify needs and develop interventions in response to those needs.

  • The original methodology differentiated between HIV non-AIDS and AIDS whereas now we use people living with diagnosed HIV infection. This aligns with changes in how HIV surveillance data are presented.
  • The new methodology uses a 5-year recent cohort for population size rather than all people living with diagnosed HIV. This 5-year cohort is defined using HIV surveillance data as the number of people living with diagnosed HIV infection in the jurisdiction based on most recent known address who had an HIV diagnosis or any other HIV-related lab data (e.g., CD4, VL, genotype, or HIV test even if already diagnosed) reported to the HIV surveillance program during the most recent five calendar year period. This makes it more likely that individuals who have moved or died are not included in the estimate.
  • Most of the components of the new methodology use the most recent known address for the person rather than address at diagnosis. This is consistent with broader changes in how data are presented by Centers for Disease Control and Prevention (CDC) and better reflects where people are living now rather than when they were diagnosed.
  • Added estimates for Late Diagnoses and In Care, Not Virally Suppressed to the new methodology.
  • The definition for "In Care" in the estimates includes CD4 and Viral Load tests, but NOT antiretroviral prescriptions, as prescription data are not available in the HIV surveillance data.
  • There are required and enhanced estimates.Required elements must be completed by all, but jurisdictions can also choose to do any or all of the additional enhanced estimates (see question below on differences between required and enhanced).

Unmet Need Definitions and Terms

Unmet Need is "the need for HIV-related health services by individuals with HIV who are aware of their HIV status, but are not receiving regular primary [HIV] health care".  (REF: Mosaica, "HRSA/HAB Definitions Relate to Needs Assessment," prepared for the Division of Service Systems, HIV/AIDS Bureau by Mosaica: The Center for Nonprofit Development and Pluralism, June 10, 2002.)

  • The required estimates utilizes HIV surveillance data for Late Diagnoses, Unmet Need, and In Care Not Virally Suppressed totals as well as Priority Populations. These estimates and analyses must be submitted to HAB.
  • The enhanced estimates includes all of the required estimates plus additional estimates and analyses that can be useful for RWHAP planning and resource allocation. In addition to HIV surveillance data, recipients may choose to use RWHAP data for Unmet Need and In Care Not Virally Suppressed as well as the same Priority Populations used for HIV surveillance data. Adding subpopulation analyses for HIV surveillance and RWHAP data is also an option. Finally, linked databases may be used. These additional estimates and analyses are optional but are recommended if feasible; how much of the enhanced estimates and analyses are completed is also up to the recipient.
  • New Diagnoses are people with HIV diagnosed in the most recent calendar year based on residence at time of diagnosis. Late diagnoses are a subset of all new diagnoses and represent people with new diagnoses whose first CD4 test result was <200 cells/mL (or a CD4 percentage of total lymphocytes of <14) or had documentation of an AIDS-defining condition ≤3 months after a diagnosis of HIV infection.  If ≥2 events occurred during the same month and could thus qualify as "first," apply the same conditions used by CDC's Division of HIV/AIDS Prevention HIV Incidence and Case Surveillance Branch (DHAP HICSB).
  • More information on the methodology is available in the Methodology for Estimating Unmet Need Instruction Manual.

While similar data may be used for analyses, the purpose of the Unmet Need Estimates and Analyses and Data to Care is different. The focus of Data to Care is on utilizing HIV surveillance and other data sources to determine who is potentially not in care and conduct investigations to either re-engage persons who are out of care or to update information in surveillance if a person is in care, has moved out of jurisdiction or is deceased.

Unmet Need also utilizes surveillance data to determine who has not recently been in care (no labs in the most recent year) but is also focused on other measures, including those with late diagnosed HIV and those who are in care but not virally suppressed. These additional estimates and analyses help to identify additional opportunities to increase testing and outreach opportunities as well as improve care engagement. Both Data to Care and Unmet Need provide information on persons with HIV (and specific priority populations) that can inform planning and intervention efforts to improve health outcomes for persons with HIV.

Jurisdictions are asked to use the most recent calendar year for which data are available. This means that a jurisdiction should have cleaned and reviewed the data and determined them to be complete, accurate and ready for release.

This will vary by jurisdiction and should be assessed at the time that the estimates and analyses are being prepared. The HIV surveillance staff in a jurisdiction will likely make the determination on which data are ready for release.

Yes, there is a difference. Unmet Need is a component of the overall planning activities a RWHAP recipient engages in to address the needs of clients. The needs assessment is the main driver for the priority setting and resource allocation activities in Ryan White jurisdictions. Using needs assessment results, recipients (and Planning Councils/Bodies in RWHAP Part A programs) must set priorities and allocate resources to meet these needs. Based on needs assessment, utilization of services, and epidemiologic data—recipients (and Planning Councils/Bodies in RWHAP Part A programs) decide what services are most needed by people with HIV in the EMA or TGA (priority setting) and decide how much RWHAP funding should be used for each of these service categories (resource allocations).

Services funded by pharmaceutical rebates and/or program income are considered RWHAP-related funded services. For estimates and analyses using RWHAP data, the denominator should include clients who received RWHAP or RWHAP-related funded services.

Preparing for the Unmet Need Estimates and Analyses

While the actual estimates are not due until the application submission, preparation for Unmet Need should start as soon as is feasible. This will ensure you have adequate time to contact and work with your HIV surveillance program as well as determine which approach you are using for Unmet Need (required or enhanced). Recipients are encouraged to develop a Preparation Plan to help them plan for completing the Unmet Need estimates and analyses.

The Abt team presented Unmet Need on a CDC HIV surveillance call in January, so the surveillance contacts should be aware of this requirement. RWHAP staff should start working with HIV surveillance staff in their jurisdictions as early as possible to identify who will be responsible for running the estimates and analyses and ensure there is adequate time to complete the work.

Tools for Completing Unmet Need and Estimates

The SAS program (analytic software) was developed by the CDC's Division of HIV/AIDS Prevention HIV Incidence and Case Surveillance Branch (DHAP HICSB) to help jurisdictions analyze their HIV surveillance data, but recipients do not have to use it.

The SAS code does assume that eHARS is being used.

The SAS program developed by CDC's Division of HIV/AIDS Prevention HIV Incidence and Case Surveillance Branch (DHAP HICSB) is available to the HIV surveillance staff in each jurisdiction and has been distributed through the CDC Sharepoint site.

The SAS code is available now to HIV surveillance staff. The SAS code is available on the CDC Sharepoint site to HIV surveillance staff in each jurisdiction.

While they both have the same templates and tables, what differs is how the different templates and tables relate to one another. In version 1, data auto-populates across different templates and tables. This means if you populate the Optional Calculation Tables, they will then automatically populate the applicable sections in the Required Reporting Templates. In version 2, this feature does not exist. Both versions have validations and auto-calculation fields (cells highlighted in yellow) to make things easier for recipients.

Completing the Unmet Need Estimates and Analyses

Jurisdictions are expected to use RWHAP data to which they already have access. If a jurisdiction already have data from different Parts in their data system, there is no requirement to filter the data. There is also no expectation to merge data across different Parts.

  • HRSA HAB encourages recipients to complete as much of the enhanced estimates and analyses as is possible.
  • Only the required estimates and analyses must be completed; any additional analyses are optional.

HRSA HAB and CDC strongly encourage data sharing between HIV surveillance and the RWHAP in jurisdictions. As a reminder, linked databases are not used for the required Unmet Need estimates and analyses, only for the enhanced estimates and analyses.

The selection of priority populations should be data driven. Specifically, data from the needs assessment, service utilization, and other component of your program (e.g., HIV Care Continuum, EIIHA strategy, Unmet Need data) should be used to make determinations on the selection of priority populations. To the extent possible, the activities to support selected priority populations should reflect the demonstrated need in the different components of the application (e.g., unmet need, EIIHA, etc.).

Recipients may use breakdowns that are most useful locally, which may include demographics such as race and age and geographic areas such as counties or health districts. It is recommended the breakdowns for the RWHAP data be the same as those for HIV surveillance data if at all possible. The SAS program from CDC will run the estimates using the categories in the Optional Calculation Tables, except for Health Planning Areas and Priority Populations, which are determined by the jurisdiction.

HAB understands that COVID-19 may have impacted lab reporting. RWHAP recipients should use the most recent data that is complete, accurate and ready for release, as determined by the HIV surveillance team.

Submitting the Unmet Need Estimates and Analyses

HRSA HAB is implementing the new unmet need requirement in the FY 2022 Notice of Funding Opportunity (NOFO). As such, all RWHAP Parts A and B recipients will be required to submit unmet need estimates and analyses in their FY 2022 applications.

Unmet Need Estimates and Analyses will need to be completed in time for inclusion in your jurisdiction’s response to the NOFO. The NOFOs are anticipated to be released late summer 2021.

HRSA HAB has developed Required Reporting Templates for recipients to use to submit Unmet Need Estimates and analysis. Recipients will also need to include narrative responses specific to unmet need in their applications based on questions in the Notice of Funding Opportunity (NOFO). Recipients may also submit the Optional Calculation tables but this is not mandatory. Additional information can be found in the RWHAP Parts Part A and B NOFOs.

Yes, recipients will be able to describe limitations in reporting Unmet Need estimates in the application.

  • The required estimates utilize HIV surveillance data for Late Diagnoses, Unmet Need, and In Care Not Virally Suppressed totals as well as Target Populations. These estimates and analyses must be submitted to HAB.
  • The enhanced estimates include the required estimates plus additional estimates and analyses for RWHAP clients using RWHAP data as well as additional subpopulation analyses for both RWHAP and HIV surveillance data. The enhanced estimates also utilize linked databases. The enhanced estimates and analyses are not required to be submitted to HRSA HAB, but jurisdictions who have the capacity are encouraged to complete them.

Technical Assistance

Training and technical assistance (TA) are available to HRSA HAB staff, RWHAP Parts A and B recipients, and state and local HIV surveillance staff by members of the Unmet Need Training and TA Team through May 31, 2021. Potential topics can include collection and use of data for estimating unmet need as well as conducting subpopulation analyses by key characteristics (e.g., age, gender, race/ethnicity, transmission risk category).

Assistance is available via email or phone consultations, webinars, staff trainings, or through the provision of resource materials. After May 31, 2021, TA is available through your HRSA HAB project officer. Email requests for assistance to members of the Unmet Need Training and TA Team. A response will be sent within 48 hours of the request.

Reach out to your HRSA HAB Project Officer with any questions.

Technical Assistance from the Abt team is available through May 31, 2021. After May 2021, technical assistance is available through your HRSA HAB Project Officer.

  • HRSA HAB has provided several resources to assist Parts A and B recipients with completing the estimates. These are available on the TargetHIV website and include:
  • Unmet Need Training Webinars Recordings and Slides
  • Training Videos
  • Methodology for Estimating Unmet Need: Instruction Manual
  • Required Reporting Template and Optional Calculation Tables (Excel)
  • The Required and Enhanced Estimates for RWHAP Unmet Need Reporting Fact Sheet
  • Estimating Unmet Need for HIV Primary Medical Care Preparation Plan
  • Feasibility of Required vs. Enhanced Estimates and Analysis for Estimating Unmet Need for HIV Primary Medical Care
  • Using Unmet Need Estimates and Analysis for HIV Primary Medical Care to Inform Planning
  • High-level Workflow Infographic for Estimating Unmet Need: Key Steps for RWHAP Part A and Part B Recipients
  • Data Capacity Assessment
  • More information on Estimating Unmet Need for HIV Primary Medical Care

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