SEES_Data Collection Protocol

SciMetrika ECHPP Evaluation and Survey

Participant Recruitment Process

SciMetrika ECHPP Evaluation and Survey (SEES)

Data Collection Process

Overview of SEES Data Collection

A total of 6 project areas will be surveyed for the SciMetrika ECHPP Evaluation and Survey interviewing selected by CDC from the twelve ECHPP jurisdictions. The SEES sites are located in Houston, Los Angeles, Miami, New York, DC, and San Francisco.

The overall strategy for the SEES interviewing is to survey respondents in each of the jurisdictions that will supplement evaluation data to assist with the overall ECHPP evaluation. The data collection activity is designed to monitor community-level outcomes of ECHPP and supplement existing HIV surveillance data already being collected via CDC data systems in these cities. Information about behavioral risk, access of HIV-related services and programs, and exposure to HIV prevention messages will be collected from either community venues (Community-Based Survey) or HIV services clinics (Clinic-Based Survey) for three populations at increased risk for HIV infection or transmission:

• Injection drug users

• Heterosexuals at increased risk of HIV infection

• HIV-positive individuals who access HIV medical care from clinics that provide HIV services

ECHPP data is presently collected for these three populations through the ongoing information collections of the National HIV Behavioral Surveillance System (NHBS -- injection drug users and high-risk heterosexuals) and the Medical Monitoring Project (MMP -- HIV-positive individuals who access clinic care), though additional data must be collected to evaluate ECHPP for the following reasons:

• NHBS data for injection drug users and high-risk heterosexuals will not be available during the time frame necessary to monitor ECHPP outcomes in these two populations in any of the twelve MSAs. Thus, the SEES data collection activities targeting these groups are needed.

• MMP sets goals for data collection at the state level (i.e., MMP staff aim to interview a specific number of HIV-positive people for an entire state during a particular cycle). Sample sizes at the level of the MSA are typically very low (less than 100 people) and, thus, additional interviews among HIV-positive people who are newly diagnosed and those who are recently re-engaged in HIV care are needed to monitor and evaluate the impact of ECHPP at the community-level.

• Data from populations at risk for HIV infection and transmission must be collected at two points in time for the ECHPP time periods, at the beginning (early 2012) and end (late 2013), to determine whether any community-level changes occurred in risk behavior, uptake of services and programs, and exposure to HIV prevention messages.

For each potential respondent recruited, a short computer-based eligibility screening survey will be administered by an interviewer to assess eligibility and collect limited demographic information. If the respondent is eligible for the survey and consents to an interview, the interviewer will administer survey specifically for community venues or the HIV services clinics. This instrument also collects information about those who refused recruitment attempts.

Data are collected by trained community interviewers through face-to-face interaction with participants. Interviewers collect the data using a software application loaded onto an iPad tablet. Response data are encrypted and sent via a secure network over internet connection to a remote server. The iPad tablets used for data collection are password protected keeping unauthorized users from viewing, exporting, or modifying collected data. The survey is anonymous; no names or phone numbers are collected.

The specific data collection tools for the Community-Based Survey and the Clinic-Based Survey are discussed below.

Data Collection Instruments: Community-Based Survey

There are two interviewing tools used to collect data from SEES Community-Based Survey participants in an in-person interview: the eligibility screener and the community questionnaire.

1a. Eligibility screener

Information collected in the community-based eligibility screener is used to describe recruitment patterns and to estimate the response rate. Eligibility screening makes efficient use of staff and respondent time by quickly identifying those who are eligible and ineligible.  Eligible individuals are those who:

• Have not completed an interview for National HIV Behavioral Surveillance (NHBS) or SEES in the past 12 months

• Are between 18 and 60 years of age

• Are male or female

• Are able to complete the interview in English

And either

• Heterosexual at risk for HIV (HET)

  • Had vaginal or anal sex with a person of the opposite sex in the past 12 months

Or

• Intravenous Drug User (IDU)

  • Injected non-prescription drugs in the past 12 months

The eligibility screener includes questions that directly measure eligibility and those that are used to characterize differences between eligible respondents and those who are recruited but ineligible. Having multiple questions in the eligibility screener, along with the iPad tablet programming that determines eligibility by the inclusion/exclusion algorithm, makes it less apparent what the eligibility criteria are and may prevent participants from coaching others on what to say to be eligible for the study.

The upper age limit of 60 years was deemed necessary to ensure that the age groups most at risk for HIV infection are included. HIV/AIDS case surveillance data indicate a majority of new infections are diagnosed among those less than 60 years of age.

Setting the 12-month time frame for sexual behavior for the HET population was chosen for the following reasons:

•     Permits subgroup analyses by time period of last sexual intercourse with a person of the opposite sex to determine differences in risk behavior by number and type of sexual partners (main, casual, exchange)

•    Provides for better feasibility of recruiting at least 200 heterosexuals per project area with more recent risk who live in an HRA

•     Matches the eligibility timeframe used in the NHBS cycles; this will allow for comparisons to the data SEES is supplementing

1b. Community Questionnaire

The SEES Community-Based Survey questionnaire is used to collect HIV behavioral risk data to supplement HIV surveillance data collection through the NHBS. Questions included in the community-based survey include the following areas:

• Demographics

• Sexual behaviors

• Alcohol and drug use history

• HIV testing experiences

• History of incarceration

• Health conditions

• Assessment of prevention activities

Data Collection Instruments: Clinic-Based Survey

There are two interviewing tools used to collect data from SEES Clinic-Based Survey participants in an in-person interview: the eligibility screener and the clinic questionnaire.

2a. Eligibility screener

Information collected in the clinic-based eligibility screener is used to describe recruitment patterns and to estimate the response rate. Eligibility screening makes efficient use of staff and respondent time by quickly identifying those who are eligible and ineligible.  Eligible individuals are those who:

• Have not completed an interview for Medical Monitoring Project (MMP) or SEES in the past 12 months

• Are over 18 years of age

• Are male, female, or transgender

• Are able to complete the interview in English

And either

• Newly Diagnosed:

  • Diagnosed as HIV-positive in the past 3 months

Or

• Recently Re-engaged

  • Diagnosed as HIV-positive in past, were not actively in care for at least 12 months, and have re-engaged in care in the past 3 months

The eligibility screener includes questions that directly measure eligibility and those that are used to characterize differences between eligible respondents and those who are recruited but ineligible. Having multiple questions in the eligibility screener, along with the iPad tablet programming that determines eligibility by the inclusion/exclusion algorithm, makes it less apparent what the eligibility criteria are and may prevent participants from coaching others on what to say to be eligible for the study.

2b. Clinic Questionnaire

The SEES Clinic-Based Survey questionnaire is used to collect data to supplement HIV surveillance data collection through the MMP. Questions included in the clinic-based survey include the following areas:

• Demographics

• Sexual behaviors

• Alcohol and drug use history

• HIV testing experiences

• Clinical treatment history

• History of incarceration

• Health conditions

• Assessment of prevention activities

• Met and unmet need

General Data Collection Procedures

Data will be collected through a number of coordinated steps, described below.  The SEES eligibility screener and questionnaire are programmed in the iPad tablet to access a secure website, and will be administered verbally to the respondents by the interviewers.

Step 1: Eligibility Assessment

Potential participants will be assessed using the eligibility screener. In order to be eligible, all potential participants must meet the criteria outlined above (see Sections 1a and 2a.).

As noted, the eligibility screener is administered using an online survey portal on an iPad. An algorithm, programmed into the screener, is used to determine which participants are eligible.  The survey will automatically end the process if the respondent is not eligible.

Step 2: Obtaining Consent

Interviewers will read a consent form to the respondents and address any questions.  Consent to participate will be obtained orally. Interviewers will check a box on the iPad indicating whether consent was obtained.  The survey will automatically end if the respondent does not agree to participate.

Step 3: Questionnaire

Eligible participants who provide consent will be administered the SEES questionnaire, either in the community venue or the clinic setting. After completion of the survey interview, participants will be offered referrals for additional HIV prevention services and HIV risk reduction counseling.

Step 4: Participation Incentives

Participants will receive a small stipend for participation in SEES activities. Upon survey completion, participants in the community-based survey will receive a $25 Visa cash card as compensation. Participants in the clinic-based survey will receive a $40 Visa cash card upon completion of their survey. Clinic survey participants are offered a higher rate of compensation based on the greater amount of time required to complete the survey instrument.

Monitoring Data Collection

All interview data are vulnerable to bias from variability in the way the interviews are conducted. This bias may arise from variability between interviewers or from variability between interviews conducted by a single interviewer. To prevent these biases, and to ensure that proper procedures are followed, monitoring procedures will be implemented to assess the consistency and quality of interviewing and the quality of data collected.

Monitoring begins with the training of the interviewers as role-play with the surveys is required during training, and their performance is monitored to ensure training success.

After interviewers have successfully completed SEES training, the SEES site coordinator will regularly monitor each interviewer as they conduct the eligibility screener, obtain informed consent, and administer the survey questionnaire during the data collection process. Feedback on the interviewers’ performance – areas of proficiency as well as areas for improvement – will be discussed with them shortly after observations are conducted. Interviewer evaluation forms will also be shared with SciMetrika project staff for additional monitoring.

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