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II. Standards and Suggested Practices

D. Data collection

CDC requires the collection of specific data that are used to answer national monitoring and evaluation questions. Variables can be collected in a variety of clinical and nonclinical settings. Health department staff may need to collect additional variables for reporting activities to other funding organizations or local variables that will assist them in answering specific questions in response to jurisdictional needs or special populations. For example, health departments may want to collect information about CTR clients’ primary language and country of origin in order to tailor services to specific immigrant populations.

The use of QA procedures during data collection is crucial for obtaining high-quality CTR data. Counselors must be trained in eliciting sensitive client information, as well as in the systematic documentation of data variables. The standards for CTR data collection in this section provide some recommended practices and tools related to the elicitation and documentation of CTR data, including information about client demographics, risk behaviors, the HIV test, and client referrals.

Standard D1: Health departments and CTR service providers should limit the number of required CTR variables collected to those that will be used on the basis of current plans.

Each CTR variable collected requires time and effort from many people, including clients and counselors, in addition to other health department and service provider staff members who enter, manage/clean, and analyze data. As discussed in the Overview, the collection of critical variables helps to inform decision making and program planning. On the other hand, collecting too much data may compromise data quality if the number of variables imposes a significant burden on the client, the counselor, or staff members involved in processing CTR data. Therefore, it is important to be sure that the costs of collecting a variable will be justified by programmatic value (i.e., will contribute to overall improvement in the provision of CTR services). Health departments can develop data analysis plans to guide their monitoring and evaluation efforts (see Standard H1 in the Data Analysis and Utilization section), and in this process identify the variables needed to answer important programmatic questions.

CDC-funded health departments are required to collect and submit a minimum set of CTR variables to CDC regularly (e.g., to answer national monitoring and evaluation questions). Health departments and service providers may collect additional CTR variables specific to funding organization requirements or to the local program’s needs and the population they serve. Health departments and service providers are encouraged to periodically review and update data forms and limit the collection of CTR data to data that will be consistently analyzed and used on the basis of their current plans.

Whenever possible, collect multiple data items by using a single variable. For example, a single six-digit site ID code variable (e.g., 112344) could be constructed so that the first two digits indicate the testing location (11), the third and fourth digits indicate the testing model (23), and the fifth and sixth digits indicate the funding source (44).

Finally, when additions or changes to variables are deemed necessary, it is important that the rationale for these changes and an explanation of how the changes will inform program services or improve data quality be clearly communicated to service providers. In doing so, the health department staff will be more likely to get buy-in from the service providers and thus ensure more accurate and complete data. If additional data are needed to answer specific questions or to examine evolving trends, one alternative to requiring the regular collection of additional data would be to conduct a special study for a limited time or with a limited number of service providers.

Decisions about collecting data should be guided by the following:

  • Stakeholders’ questions about aspects of their work against the epidemic
  • HIV prevention goals and the mission of the health department
  • Funding organization requirement
  • Jurisdiction’s priorities and plan
  • Input from community planning groups, service providers, and other partners
  • Common data requests from government officials or legislators

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Standard D2: Health departments should develop written guidance for service providers to explicate all required CTR variables.

Providing guidance concerning CTR variables will enhance the quality of data collection by ensuring that the data elicited and documented by service providers are reliable, standard, and consistent and that the data collected by counselors are valid (i.e., reflect the information that is being collected). Health departments should encourage service providers to include this guidance in their procedures manuals. CDC’s HIV CTR Form and Variables Manual (included as a Resource below) is useful for health departments that are helping service providers develop this guidance. See Figure 3 for an example of guidance from the manual.

A CTR variable guidance document may include the following:

  • Definitions of variables and response options
  • Simple explanation of how variables may be used to answer specific questions
  • All local-use variables and definitions
  • Tips for avoiding common errors during the collection of the variables
  • Master lists (e.g., list of all agency ID codes and counselor ID codes in the jurisdiction)
  • Skip patterns, conditional relationships between variables

Figure 3. Example guidance for “Previous HIV Test” variable

Resources

  1. NHME data set (CDC)

    Complete list of National HIV Prevention Program Monitoring and Evaluation (NHME) variables (variable number, variable name, value choices [if applicable], definition, instructions, and CDC’s reporting requirements for each variable).

  2. HIV test form and variables manual (CDC)

    Detailed explanation of the CTR variables that providers must collect to meet CDC requirements. This manual is focused on the client- and agency-level variables related to CTR services and based on CDC’s revised HIV Test Form (released November 2007). Although not all agencies will use the new HIV Test Form to collect CTR data, the rationales and definitions in this manual are relevant to all health departments funded by CDC to provide CTR services and collect testing data.

  1. Guidance for completing the HIV counseling information form (HIV7) (California)

    Guidance developed by the California Department of Public Health to help HIV counselors better understand the HIV Counseling Information Form and thus to record client information consistently; provides a detailed explanation of each item on the form and describes the role of the form in HIV counseling.

  2. Table of HIV agency ID numbers (Louisiana)

    Table of agency ID numbers and agency names: an example of clear guidance concerning variables.

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Standard D3: Health departments should ensure that CTR data collection forms are user-friendly and designed to reduce errors in data documentation.

Well-designed data collection forms can help ensure that counselors obtain accurate information during the counseling session. Once a client leaves the counseling session, it becomes very difficult and costly to obtain missing information or to correct data errors. The design of CTR data forms, including the formats of the variable fields and variable sequencing, can affect the number of data errors during data collection and documentation. For example, designing data forms according to the typical sequence and flow of the CTR session makes it easier for a counselor to provide a client-centered session while obtaining the necessary CTR data.

When designing data collection forms, consider limiting the number of data fields that require the use of technology that recognizes handwritten characters (i.e., printed in text boxes). For some data, such as date of birth, optical bubble fields can be used instead of character recognition data fields. Provide CTR staff with clear examples of how to correctly shade bubbles (i.e., fill in completely versus using check marks or diagonal lines). Other design issues, such as font size and the clarity of headings versus subheadings, also need to be considered. It is also important to pilot new forms and to solicit feedback from service providers and other key CTR staff. Although designing effective data collection forms can be time-consuming, spending the time up front often prevents data collection errors.

Counselors should be trained to pay close attention to skip patterns to avoid missing data and the incorrect completion of data fields. Health departments may consider providing CTR counselors with training in the sequencing of variables and how to best use the form to collect data, including examples of common data errors.

Resources

  1. Revised HIV test form (released November 2007) (CDC)

    Health departments funded by CDC to provide HIV CTR services are required to collect data about these activities. This form is designed to follow the flow of a typical CTR session which helps CTR counselors systematically collect the required CTR variables.

  2. HIV testing encounter form (Maryland)

    User-friendly form designed to reduce errors in documenting or entering data.

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Standard D4: Health departments should require service providers to implement QA practices for data elicitation and documentation to maximize the completeness and accuracy of CTR data.

Data quality can be affected at various stages during data collection, but perhaps most commonly during a counselor’s interaction with a client, when data are elicited from the client and either written or key-entered. Health departments should help CTR service providers prepare counselors to effectively elicit and document complete and accurate client data. Counselors need sufficient supervision and practice in developing rapport and gaining the client’s trust, determining how and when to ask sensitive questions, and creating a nonjudgmental environment. In addition, CTR counselors need a thorough orientation and ongoing supervision of the site-specific procedures for documenting CTR data variables.

The following are examples of data collection strategies that health departments could require service providers to implement to improve data quality:

  • Provide a procedures manual to all CTR staff.
  • Periodically supervise counselor-client interactions to assess the need for additional training in the elicitation or documentation of client data.
  • Discuss QA issues during regular staff meetings; encourage questions or concerns about eliciting, documenting, or processing CTR data.
  • Elicit feedback from counselors on effective ways to increase reporting accuracy and data completeness (e.g., improving the data collection form).
  • Train counselors to speak informally with clients before CTR sessions in order to develop rapport and trust to help clients feel more comfortable when reporting sensitive information.

For service providers using hard-copy CTR forms:

  • If the data collection form does not follow the CTR session flow, a counselor can use guides or checklists that list the required variables to facilitate CTR session flow and to enhance client rapport.
  • Ensure that counselors carefully complete each required field, filling in bubbles completely and writing numbers and letters clearly. Also, counselors should avoid making or should remove stray marks outside designated spaces so that they will not be read by the scanner as errors or be misread by data entry staff.
  • Do not fold, staple, paper-clip, or three-hole–punch scannable forms.
  • Conduct systematic error checks of CTR data forms. In addition to reducing the submission of data that contain errors, this practice will help to assess the need for additional training or technical assistance.

Client-administered data collection

Service providers may collect client information before the CTR session via a client-administered intake sheet or even a personal computer or handheld device; both methods offer clients more privacy and increase the likelihood of accurate reporting of sensitive information. If client-administered methods are used, instructions to clients should be very clear, and the form or computer application must be user-friendly. In addition, client literacy levels, language barriers, and sight impairment must be considered, and alternate methods of data collection must be available, for example, audio narration by computer or by CTR staff.

In addition to helping clients feel more comfortable providing sensitive information, there may be several other advantages to client-administered data collection before the session. Client-administered methods may allow the counselor more time during the session to focus on, and discuss, the client’s individual needs. If the counselor reviews a client’s responses before the session, the information provided (e.g., risk behavior, reason for getting tested) may help guide the discussion.

Offering clients privacy may increase self-disclosure of risk behaviors

A service provider in San Francisco who allowed clients to enter data in a PDA before their CTR session found that the reporting of risk behaviors increased.

For more information about this approach, visit the service provider’s Web site

Photograph of data being entered into a PDA.

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Standard D5: Health departments should assign priority to data collected from, or concerning, HIV-positive clients, including documentation of a confirmed test result and the provision of test results and linkages to care.

One of the primary goals of CTR services is to ensure that HIV-infected persons (1) have access to testing to promote early knowledge of their positive serostatus, (2) receive high-quality HIV prevention counseling to reduce transmission to others, and (3) have access to appropriate medical and preventive services. Timely data are needed from clients who test HIV-positive in order to most effectively monitor the number of HIV cases, the provision of positive test results, and appropriate referrals to care, treatment, and partner services.

In many states, a client who receives a preliminary positive result from a rapid test cannot be reported as HIV-positive or linked to medical care unless he or she receives a positive result from a confirmatory test. Service providers should be made aware of the importance of making every effort to provide confirmatory test results for clients who receive a preliminary positive result from a rapid test. If a service provider is unable to provide a confirmatory test, the client should be referred immediately to another provider for confirmatory testing, and this referral should be documented accordingly. Health departments may consider assigning a staff member to follow up with service providers to ensure that linkages to care and treatment services are provided and that these linkages are properly documented and reported.

Resources

  1. Tracking spreadsheet for clients who test HIV positive

    Excellent example of a tracking spreadsheet to facilitate follow-up with clients who test HIV positive. It includes sections to track preliminary positive rapid test results and confirmed/conventional test results.

  2. Behavioral details consistency checklist (CDC)

    Form designed to collect behavioral details while checking for internal consistency of responses provided.

Special considerations for data collection in clinical settings

Health departments developing procedures for collecting high-quality HIV testing data in clinical settings may need to invest additional attention and resources in understanding the circumstances of each clinical venue with which they work. For example, health departments should consider the amount of time available for collecting and documenting client information and test results, the availability of a private setting in which to interview clients, and where data will be securely stored onsite. For clinical settings, health departments should consider reducing the number of variables collected and eliminating questions that require additional time that could be a burden for clients or providers.

Some clinical venues, such as emergency departments and correctional health facilities, have specific data collection limitations. Clinicians in emergency departments are unlikely to have time to collect information on risk behaviors. Staff in correctional health facilities may not be allowed to collect or report risk behaviors, which might indicate violations of rules during incarceration. HIV testing staff in correctional facilities might also be prohibited from bringing some of the materials needed for data collection, such as forms, writing instruments, laptops and other portable electronic devices, into the facility.

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Resources will be made available in the future

 

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