2012 Case-Surveillance-Based-Sampling Questionnaire for the Medical Monitoring Project (MPP)

Attachment 9a

CSBS Recruitment Guidance, CSBS Staff Make Initial Contact

Face-to Face and Telephone Recruitment Guidance and Model Scripts

Case Surveillance-Based Sampling (CSBS) Staff Make Initial Contact

This document describes issues to consider when developing local procedures and scripts for interview recruitment. To minimize the chance of an adverse impact on sampled persons, Case-Surveillance-Based Sampling staff must confirm the sampled person’s identity and address the potential for contacting a person unaware of his/her HIV status. These issues apply equally to both face-to-face and telephone recruitment. Logistical issues of particular relevance to telephone interview are also discussed.

This document specifically addresses the scenario where CSBS staff makes initial contact with the participant. The alternative scenario where HIV facility staff makes initial contact is described in a separate document. Please note that scripts are provided as examples. Scripts and procedures should be modified according to your local situation.

Participant Identification

CSBS staff making initial contact with potential participants should follow their project area standard procedures when contacting potential participants and explaining CSBS. Maintaining confidentiality is essential. Mention of HIV/AIDS should not occur until the sampled person’s identity can be confirmed. CSBS staff should be sensitive to the risk of inadvertently disclosing the sampled person’s HIV status.

Before providing a thorough explanation of CSBS, staff will need to verify the potential participant’s identity. To confirm a participant’s identity over the phone, CSBS staff members should obtain the following information prior to calling the participant. When the participant is contacted, he/she will be required to provide the matching information. Two or more of methods of confirming identity should be used. Examples include:

1. What is your full name (including middle name and/or suffix)?

2. What is your date of birth?

3. Do you have a regular place or person that you go to for medical care? If yes, what is the name of that place or person (persons receiving care only)?

4. What are the last four digits of your social security number?

5. I have in my records another phone number for John Doe that begins with (404) 639. Can you tell me the last four digits of that phone number?

6. Did you used to live in Pasadena? What was your address at that time?

7. Would you please show me an ID card such as a driver’s license so that I can make sure I am speaking with the right person (face-to-face recruitment only)?

The option to ask about the person’s HIV care facility should only be used if the person is receiving HIV care, and the fact that he or she receives care at a given clinic has been confirmed with that facility. If the person is able to answer these questions correctly, the interviewer may move on to the recruitment portion of the interview. If the person cannot answer the questions correctly by telephone, the interviewer should schedule a face-to-face interview so that the participant’s identity can be confirmed in person by asking to view an identification card. In the less common situation where facility staff is the first to approach patients about CSBS, project areas may choose to ask staff to give the patient a code number or word at that time. This code can be later used to confirm the person’s identity in place of confirmatory questions.

Sample Script

CSBS Staff: Hello, may I speak with John Doe?

CSBS Staff:

I am getting in touch with you about a health survey for John Doe and for confidentiality reasons I need to make sure that I am talking to the right person. May I ask you a few questions to make sure I’m speaking with the right John Doe?

CSBS Staff: What is your full name including your middle name?

Participant: John Alexander Doe.

CSBS Staff: Great! May I ask your date of birth?

Participant: February, 10^th, 1974.

CSBS Staff: Excellent! Just one more question to make sure I’m talking to the right person. Do you have a regular place you go for medical care? If so, what is the name of that place?

Participant: The Emory Clinic on Clifton Road.

CSBS Staff: Thank you, Mr. Doe.

Project Introduction

Local procedures must have a way to identify in a sensitive manner those people who were not previously aware of their HIV status. One approach is to use CD4 and viral load results reported subsequent to the HIV diagnostic test to separate sampled persons into those with evidence of having received HIV care (who would also know their HIV status), and those who have no evidence of having received HIV care. Encountering people who were not previously aware of their HIV status is an opportunity to help them by letting them know the diagnosis and by facilitating their entry into HIV care. However, to have a positive impact, such interactions must be approached with sensitivity and forethought.

In introducing CSBS it is also important to quickly put the sampled person at ease, establish legitimacy, develop rapport, and convey the reasons they might choose to participate. The below sample script describes such an approach in further detail.

Sample Script

CSBS Staff: Hi, my name is _________, and I’m getting in touch with you to see if you would be interested in participating in the Case-Surveillance-Based Sampling Demonstration Project, or CSBS, a national project funded by the US Centers for Disease Control and Prevention and conducted by the (Health Department).

We’re collecting information to improve disease prevention efforts and services for people with your specific health care needs. If you choose to participate, you will complete a one-time 45-minute interview and your medical record will be reviewed. You will be given $XX.00 as a token of appreciation.

• For those with evidence of having received HIV care:

You and _____(X number) other participants were randomly chosen from among people who have HIV, because the health needs of people living with HIV are so important to our community. I’m sorry for having to ask you those questions to check your identity, but we take your privacy very seriously. This project is completely confidential. We will not use your name or medical record number in any of the reports from this project. Would you be interested in participating?

• For those without evidence of having received HIV care:

You and _____(X number) other participants were randomly chosen from among people who have had a positive HIV test in the past, because the health needs of people living with HIV are so important to our community. I just want to make sure. Were you aware that you’ve had a positive HIV test?

I’m sorry for having to ask you those questions to check your identity, but we take your privacy very seriously. This project is completely confidential. We will not use your name or medical record number in any of the reports from this project. Would you be interested in participating?

Telephone Interview Logistics

Scheduling the Interview

• Scenario 1: Telephone Interview Selected

CSBS Staff: Great! I’d like to offer you the opportunity to complete the interview either over the phone or in person. Please keep in mind that the interview may take up to 45 minutes and may cover sensitive information. If you choose to complete the interview over the phone, you’ll need to have a phone and a private space that you can use for the time it takes to complete the interview. Would you like to complete the interview by phone or in person?

Participant: Well, I work during the day. Could we do it over the phone after work?

CSBS Staff: Yes, that’s no problem. Like I said, some of the questions can be sensitive in nature. Will you have a private place to do the interview?

Participant: Yes, at my sister’s house.

CSBS Staff: Do you have a landline or a cell phone?

Participant: I’ll use my cell phone.

CSBS Staff: Okay. The interview will take 45 minutes to complete and we won’t be able to reimburse you specifically for the cell phone minutes used. We will only be able to provide you with $___ as a token of appreciation. Is that okay?

Participant: Yes, I have unlimited minutes.

• Scenario 2: Telephone Interview Selected: On the Spot

Participant: Can I take the interview right now?

CSBS Staff: During the interview, there are some questions that have multiple choices or options to choose more than one answer, and seeing the answers in front of you may help you pick the best one. Also, some questions ask about specific dates, so it is helpful to have a calendar available. To complete the interview, you will need to have a set of response cards that list the choices for these questions and include a calendar. If you want to complete the interview right now, I can help you get the response cards off the internet. Do you have internet access right now?

CSBS Staff: Okay. It’s really important that you have the response cards with you when taking the interview. Let’s schedule the interview for a few days from now. That will give me a chance to mail the cards out to you. The cards will have HIV-related information on them. Is it okay to send them to you through the mail?

• Scenario 3: In-person Interview Selected

CSBS Staff: Great! I’d like to offer you the opportunity to complete the interview either over the phone or in person. Please keep in mind that the interview may take up to 45 minutes and may cover sensitive information. If you choose to complete the interview over the phone, you’ll need to have a phone and a private space that you can use for the time it takes to complete the interview. Would you like to complete the interview by phone or in person?

Participant: I’d rather do it in person.

Informed Consent

Verbal or written consent for participation must be obtained before conducting the interview. To obtain verbal consent, interviewers must read the informed consent form to the participant. To obtain written consent, interviewers can either mail the consent form or obtain consent in person when recruiting at a clinic. If obtaining consent through the mail, interviewers should read the consent form to the participant again prior to starting the interview.

• Verbal Consent

CSBS Staff: Before we begin the interview, I need to get your consent to participate. In order to do that, I have to read you what is called an “Informed Consent” form. After I have read the form and answered your questions, you will have the chance to agree to the interview or to decline the interview.

Do you have any questions?

• Written Consent via Mail

CSBS Staff: Before we can schedule the interview, I need to get a signed form saying that you agree to participate. I will mail you the form, called an Informed Consent form, and ask you to read it over. If at any time you have questions about the form, please call me. If you agree to sign the form and participate, you’ll send it back to me in the self-addressed envelope that I will provide. After I receive your signed form, I will contact you to schedule your appointment. The consent form will have HIV related information on it. Is it okay to send it to you through the mail?

• Written Consent in Person

CSBS staff members may obtain written consent if they recruit participants in person at an HIV clinic or at the person’s residence.

Response Cards

Participants should obtain the response cards prior to participating in the interview. CSBS staff will either mail the response card set to the participant prior to the interview, provide the response cards to the participant in-person at the time of recruitment at the clinic, or the cards will be posted to local CSBS external websites. As a last resort, performing the interview without response cards is preferable to not getting the interview at all.

• Mail

CSBS Staff: During the interview, there are some questions that have multiple choices or options to select more than one answer. I will mail you a set of response cards before the interview that list the possible answers to these questions to make it easier for you to choose your answer. The cards will have HIV-related information on them. Is it okay to send them to you through the mail?

• In-Person

If CSBS staff members recruit participants in-person, they should provide the response cards to the participant when scheduling the interview.

• Internet

If participants agree to complete the survey during the initial contact, CSBS staff should direct the respondent to the local CSBS external website or the CDC website, accessible at 4mmp.com for English and 6mmp.com for Spanish, so they can retrieve the response cards. If the respondent cannot access the cards, the interview will have to be rescheduled for a later date.

Incentives

Interviewers should explain how the participant will receive the token of appreciation for completing the interview. Measures to ensure that the participant received the token of appreciation include certified mail, in-person delivery, and self-addressed stamped reply cards. All of these methods have been used successfully by Medical Monitoring Project sites in the past.

• Mail

CSBS Staff: As I explained earlier, you will be given $___ as a token of appreciation today. The $__will be in the form of a _________. We will send this out by mail, but will need you to sign for it so that we can be sure you received it. Can I verify your address?

• Medical Facility

CSBS Staff: As I explained earlier, you will be given $___as a token of appreciation. The $___ will be in the form of a _______. You will be able to pick it up at your doctor’s office at your next visit. When you pick it up, you will be asked to sign a receipt so that we can confirm that you received it.

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