Reducing HIV Stigma to Increase HIV Testing Among Adolescents and Young Adults in Kazakhstan Using a Crowdsourcing Approach
Phase: NA
Conditions: Stigma, Social, HIV Testing
Sponsor: Columbia University

 
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Reducing HIV Stigma to Increase HIV Testing Among Adolescents and 
Young Adults in Kazakhstan Using a Crowdsourcing Approach 
 
Study Protocol 
30 Dec. 2022 
Version 1.3 
 
 
 

 
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STUDY TEAM 
Partner Institutions: Global Health Research Center of Central Asia, Research Triangle 
Institute, University of North Carolina at Chapel Hill, Boston University 
  
PIs: Alissa Davis & Gaukhar Mergenova  
Team members: Alissa Davis, Gaukhar Mergenova, Laura Nyblade, Joseph Tucker, 
Weiming Tang, Karsten Lunze, Assel Terlikbayeva, Sholpan Primbetova, Nabila El-
Bassel, Susan Rosenthal, Yihang Sun, Sara Landers, Azamat Kuskulov 
 
Funding support: Fogarty International Center, National Institute of Child and Human 
Development – R21TW012017 
  
 
 
 

 
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Table of Contents 
1. Summary ......................................................................................................................... 4 
2. Introduction .................................................................................................................... 4 
2.1 Background ........................................................................................................... 4 
2.2 Specific Aims and Hypotheses ........................................................................... 7 
2.3. Innovation ............................................................................................................ 7 
3. Study Design .................................................................................................................. 8 
3.1 Study Overview and Study Setting ..................................................................... 8 
3.2 Aim 1- Develop a crowdsourced intervention package ................................... 8 
3.2.1 Crowdsourcing Contest Procedures .................................................................. 8 
3.3 Aim 2- Pilot Randomized Controlled Trial .......................................................... 9 
3.3.1 Survey Pre-Testing preparation phase .............................................................. 9 
3.3.2 Survey Pre-Testing Study recruitment ............................................................. 10 
3.3.3 Survey Pre-Testing Procedures ........................................................................ 11 
3.3.4 RCT Study recruitment ...................................................................................... 11 
3.3.5 Recruitment Procedure ...................................................................................... 12 
3.3.6 Baseline Questionnaire ..................................................................................... 14 
3.3.7 Intervention Content ........................................................................................... 14 
3.3.8 Follow-up surveys ............................................................................................... 14 
3.3.9 HIV Testing and Linkage to Care ..................................................................... 14 
3.3.10 Qualitative Interviews ....................................................................................... 15 
3.3.11 Data analyses ................................................................................................... 15 
4 Ethical Considerations ................................................................................................. 16 
4.1 Risk Analysis ...................................................................................................... 16 
4.1.1 Risk to the participants ...................................................................................... 16 
4.1.2 Benefits of the study ........................................................................................... 16 
4.1.3 Alternatives to Participation ............................................................................... 16 
4.1.4 Compensation ..................................................................................................... 17 
4.2 Confidentiality ..................................................................................................... 17 
4.3 Data and Safety Monitoring Procedures .......................................................... 18 
4.4 Compliance ......................................................................................................... 18 
4.5 Participant Withdrawal ....................................................................................... 18 
4.6 Institutional review board .................................................................................. 19 
4.7 Informed consent ............................................................................................... 19 
5 Future Use ..................................................................................................................... 19 
5.1 Contact for future research studies ................................................................. 19 
5.2 Contact for future research studies ................................................................. 19 
 
 
 
 

 
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1. Summary 
Given rising rates of HIV incidence among adolescents and young adults (AYA) in 
Kazakhstan and high levels of HIV stigma and low HIV testing uptake, this proposal 
will use crowdsourcing to develop a digital intervention to reduce HIV stigma and 
promote HIV self-testing among AYA in Kazakhstan. This study aims to use a 
community-based participatory approach that engages local AYA and youth 
organizations to develop a crowdsourced digital HIV stigma reduction and self-testing 
intervention to reduce HIV stigma and increase HIV testing among AYA in 
Kazakhstan and to pilot test this crowdsourced HIV stigma reduction and self-testing 
intervention in a preliminary efficacy trial to assess feasibility and acceptability and 
obtain preliminary estimates of its effects on decreasing HIV stigma (primary 
outcome) and increasing HIV testing (secondary outcome) among AYA (n=168) in 
Kazakhstan who received the intervention compared to individuals who did not. 
2. Introduction 
2.1 Background 
Globally adolescents and young adults (AYA) are at increased risk for HIV 
acquisition. Eastern Europe and Central Asia is the only global region with a 
projected increase in AYA living with HIV from 2010 to 2050. Incident HIV infections 
among AYA in the region are projected to increase at alarming rates, with the 
population of 15-24 year olds living with HIV projected to increase by 28% by 2030. 
In Kazakhstan, AYA bear one of the largest burdens of HIV infection. Over 23% of all 
HIV infections in Kazakhstan are estimated to be among AYA.2 Increases in AYA HIV 
incidence are largely driven by risky sexual behaviors, such as unprotected sex and 
use of substances before or during sex. Despite growing rates of HIV infection 
among AYA in Kazakhstan, AYA have some of the lowest HIV testing rates in the 
country compared to other risk groups. In 2015, only 22% of girls aged 15-24 were 
tested for HIV in the past year and only 15% of boys were tested for HIV.18 

 
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HIV-related stigma is a major deterrent to HIV related protective behaviors, including 
HIV testing. HIV stigma is multidimensional and has adverse consequences for the 
prevention and management of HIV/AIDS. In Kazakhstan, we have found that HIV 
stigma inhibits AYA from getting tested for HIV, learning their serostatus and 
accessing care.4,19 Stigma impedes HIV testing in two main ways: 1) it reduces AYA’s 
desire to be tested through AYA’s anticipated, perceived, and/or vicarious stigma; and 
2) it interferes with HIV testing because the location is stigmatizing. HIV tests are 
traditionally administered at designated city AIDS Centers, which are inconveniently 
located for many and where it is clear what types of services individuals are 
receiving. AYA often avoid HIV testing because individuals who attend AIDS Centers 
are generally perceived as engaging in HIV risk behaviors, such as pre-marital/extra-
marital sex and substance use, and because it raises the suspicion of being HIV 
positive. Rapid HIV tests conducted at home or in the community could help 
overcome some of this stigma. However, although rapid HIV tests are available in 
Kazakhstan, they are not widely used and AYA are not generally aware of their 
availability. Furthermore, due to stigma, many AYA are afraid to be tested out of fear 
they will test positive for HIV and face discrimination from family, friends, healthcare 
providers, and others in the community. 
Crowdsourcing and social media are powerful tools that can engage the local 
community to reduce HIV stigma and promote HIV testing and other protective 
behaviors. Conventional approaches to designing and implementing HIV testing or 
stigma reduction interventions often do not sufficiently involve target communities 
and thus have frequently resulted in low community/key population engagement.7 By 
contrast, crowdsourcing takes a “bottom up” approach to designing HIV stigma 
reduction and HIV testing interventions. It has high involvement from local 
communities/key populations in designing and disseminating public health messages 
and intervention strategies. Where conventional approaches rely on public health 
expert opinions, this strategy builds on community “crowd input”. Crowdsourcing thus 
increases community engagement from a broad range of non-experts with lived 

 
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experiences, including individuals in affected populations, experience-rich community 
leaders, and creative individuals. This approach fosters innovation and greater 
inclusion of perspectives from diverse community members, compared to 
conventional approaches such as disseminating public health messages and 
materials issued by National Ministries of Health. Crowdsourcing may be particularly 
useful for developing HIV stigma reduction interventions because local populations 
are often more aware of the types of content and messaging that are appropriate and 
effective in their cultural context than researchers or public health experts. 
HIV self-testing can also reduce stigma and increase access to HIV testing, 
especially for AYA in low and middle income countries. Providing AYA with access to 
HIV rapid self-test kits allows AYA to access HIV testing outside of the AIDS Center 
and in a private location. This allows them to avoid known testing settings, thus 
addressing the fear of involuntary disclosure of perceived HIV serostatus or related 
risks, such as sexual behaviors or substance use. Offering a crowdsourced digital 
intervention with HIV self-testing kits also allows AYA to avoid the complications of 
accessing HIV testing during the COVID-19 pandemic. HIV self-testing among AYA 
has been shown to be effective in increasing HIV testing uptake in other countries, 
including LMICs,20–25 but many AYA in Kazakhstan are unaware of the availability of 
HIV self-testing and it is not widely used, which is one gap the proposed 
crowdsourcing intervention aims to address. Individuals testing positive for HIV 
through a rapid test will have the support of research staff to help link them to 
confirmatory testing and overcome initial barriers to initiate HIV care. Once proven 
feasible and sustainably implemented outside of the research study through local 
community-based and youth organizations who work with people living with HIV, this 
model can help link newly positive HIV individuals to care and thus improve the HIV 
care cascade. 
This work will result in an integrated digital crowdsourced stigma reduction and self-
testing intervention to reduce HIV stigma and improve HIV testing uptake among the 
key population of AYA in Kazakhstan. 

 
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2.2 Specific Aims and Hypotheses 
Specific Aim 1: To develop a crowdsourced digital HIV stigma reduction and self-
testing intervention targeting AYA in Kazakhstan. Using a community-based 
participatory approach that engages local AYA and youth organizations, we will 
launch a national crowdsourcing contest in which AYA will design multimedia content 
to reduce HIV stigma in order to promote HIV testing among peers. 
Specific Aim 2: To pilot test this crowdsourced HIV stigma reduction and self-testing 
intervention in a preliminary efficacy trial. We will assess the intervention’s feasibility 
and acceptability and obtain preliminary estimates of its effects on decreasing HIV 
stigma (primary outcome) and increasing HIV testing (secondary outcome) among 
AYA in Kazakhstan who received the intervention compared to individuals who did 
not. Participants (n=200) will be randomized 1:1 to 1) receive the winning multimedia 
crowdsourced HIV stigma reduction content and a link for HIV self-testing, or 2) 
receive standard Kazakhstan Ministry of Health HIV informational materials and a link 
for HIV self-testing. 
2.3. Innovation 
1)  This project uses crowdsourcing to reduce HIV-related stigma to increase HIV 
self-testing. This is a novel approach in Kazakhstan which, instead of primarily relying 
on Ministry of Health messaging and testing facilities at AIDS Centers, will engage 
communities to help develop culturally tailored content that appeals to the AYA 
population most vulnerable in this setting’s HIV epidemic. 
2) Crowdsourcing is a novel strategy particularly suited for and specifically targeted 
at engaging AYA. As crowdsourcing is enabled by the Internet and social media, AYA 
are an ideal group to apply this intervention to because they have high rates of 
Internet and social media usage and are tech savvy. 
3) This project fosters innovation in that it moves testing away from current post-
Soviet test settings at AIDS Centers and towards community-based settings, thus 

 
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removing testing barriers and addressing HIV stigma. 
3. Study Design 
3.1 Study Overview and Study Setting 
We will develop a digital crowdsourced intervention package and compare the 
intervention to traditional Ministry of Health AIDS messaging in a pilot randomized 
controlled trial in Almaty, Kazakhstan. The crowdsourcing contest will be conducted 
nationally. The pilot RCT will be conducted in Almaty, Kazakhstan. Eligible AYA will be 
randomized to either intervention arm (participants will be shown a collection of 
winning videos, images, and concepts from the crowdsourced contest) or control arm 
(standard AIDS Center messaging) in a 1:1 ratio. Materials will be able to be viewed 
digitally.  
3.2 Aim 1- Develop a crowdsourced intervention package 
In phase 1, we will develop a crowdsourced stigma reduction and self-testing 
intervention package that includes videos, images, and concepts that aim to reduce 
HIV stigma to increase HIV self-testing. We will post an open call for a crowdsourcing 
contest to solicit multi-media entries aimed at reducing HIV stigma to increase HIV 
testing. AYA across all of Kazakhstan between the ages of 13-29 will be eligible to 
submit entries to the crowdsourcing contest. Entries will be solicited through an 
announcement promoted via websites and social media accounts operated by local 
youth organizations. We expect that we will obtain at least 50 contest entries. 
3.2.1 Crowdsourcing Contest Procedures 
In phase 1, we will first implement an open contest and evaluate contest entries using 
standardized criteria to develop the intervention package. A call for entries will be first 
announced on multiple platforms accompanied by in-person informational events to 
promote the contest. We expect that we will receive at least 50 contest entries. We will 
accept individual and group entries. Contestants may submit any type of the following 

 
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multi-media materials to the contest: images/photos, video, audio, text, comics. 
Contestants will be informed that if they choose to include identifiable images of 
individuals in their submissions, they must fill out a photo/video permission form for 
each individual and obtain permission to use that person’s image. Entries will be 
submitted via Columbia University Global Health Research Center of Central Asia’s 
(GHRCCA’s) web portal. Each entry will first be screened by two research staff to 
ensure eligibility criteria are met (e.g., submission is not too long, image is not blurry, 
content is not stigmatizing). Entries will then be judged blind by an expert panel on 
several criteria, such as innovation and potential impact to reduce HIV stigma related 
to HIV testing. The expert judging panel will consist of experts from youth organizations, 
AIDS Centers, and international organizations, as well as researchers. If we receive 
more than 100 submissions, we will also establish a crowd panel to blindly judge 
submissions and identify the top 100 submissions, which will then be judged blind by 
the expert panel. Each submission will be reviewed by three expert judges. Each judge 
will rank each submission on a scale of 1-10 and the ranking scores will be averaged. 
Entries will be judged in two age categories: 13-19 and 20-29. We will provide 
participation certificates for all eligible entries. Prizes will be awarded to the top ten 
finalists in each age category, and larger prizes will be awarded to the top three entries 
in each category. Examples of smaller prizes include portable phone charging banks, 
gift cards, pens, etc., and examples of larger prizes include an Ipad, game system, etc. 
All individuals who submitted an entry will receive a certificate and a small appreciation 
prize (e.g., a pen). Top-ranked submissions will be used as materials for the stigma-
reduction intervention. 
3.3 Aim 2- Pilot Randomized Controlled Trial 
3.3.1 Survey Pre-Testing preparation phase 
Research has identified the costs of discrepancies between intended and actual 
meaning of survey items. When items are thought to mean something from the 
researcher’s perspective and mean something quite different from the participant’s 

 
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perspective, inaccuracies in conclusions and mischaracterization occur. Cognitive 
interviewing is a method that systematically collects information in specific domains 
influencing item interpretation, including readability, applicability, relevancy, and cross-
cultural equivalence, as well as processes participants go through to end up with a 
final answer, such as “editing” response choices and managing self-presentation. Prior 
to the start of the RCT, we will conduct cognitive interviewing for the translated BL, 
1mo, and 3mo survey measure (in both Russian and Kazakh) to evaluate the 
agreement between the intended meaning of items and the actual interpretation of 
these by adolescents and young adults in Kazakhstan. 
3.3.2 Survey Pre-Testing Study recruitment 
Prior to launch of the RCT, we will conduct cognitive interviewing with 20 AYA (10 
Russian-speaking, 10 Kazakh-speaking) to gain a better understanding of how AYA in 
Kazakhstan interpret the survey items and help ensure that AYA interpretation matches 
the meaning intended by the research team. 
 
Eligible participants for the survey pre-testing phase will be AYA between the ages of 
16-24, speak Russian and/or Kazakh, and reside in Kazakhstan. Participants will be 
recruited through local youth organizations. Staff at youth organizations will be 
informed about the study and asked to share information about the study to eligible 
AYA and their parents who access services or attend events at their organization. 
Potentially interested AYA will be given the contact information of research staff so that 
they can contact staff directly to participate. They can also give permission to have 
their contact information shared with research staff, who can then reach out to 
complete informed consent and confirmatory eligibility screening procedures. For 
adolescents under 18 participating in the survey pre-testing, we will also obtain 
parental permission. Research staff will video call AYA (and parents when applicable) 
to receive AYA consent and parental permission to participate in the study. Informed 
assent/consent forms will be emailed to both parents and AYA before the initial meeting 
where informed assent/consent will be conducted and eligibility confirmed. Because 

 
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procedures are being conducted remotely, instead of obtaining written consent, an RA 
will sign the assent/consent forms indicating that the AYA has provided assent/consent 
and the parent has provided parental permission.    
3.3.3 Survey Pre-Testing Procedures 
After completing the informed consent process, eligible AYA will complete an interview 
with a research staff member via Columbia University’s Zoom platform. Interviews will 
be recorded to ensure that no important information is missed. No identifying 
information will be recorded. Participants will read survey questions aloud and 
verbalize their thought process involved in answering the question. The interviewer will 
model the process at the beginning of the interview for demonstration purposes. 
Participants read each question (including instructions or definitions) and answer 
option while talking through what they are thinking to themselves to come up with their 
answer choice. For questions that are confusing or where participants may have a 
different interpretation than the research team, the interviewer will ask probing 
questions (e.g., ‘What do you think this question is asking? How do you feel about it? 
How would you recommend this question or answers be changed?) to better identify 
specific problems and reframe the questions to be more culturally and contextually 
relevant. Clarifications and modifications to the survey questions will be made based 
on participant feedback. 
 
Interviews will last approximately 60-90 minutes and participants will receive 
approximately $15 USD compensation as a phone card or gift card. Only authorized 
research staff will have access to the data. Interviews will be transcribed and uploaded 
to Columbia University’s secure Box system. Interviews will be deleted following 
completion of data analysis. Participants in the survey pre-testing phase will not be 
eligible to participate in the RCT phase. 
3.3.4 RCT Study recruitment 
In phase 2, we will pilot test the crowdsourced intervention among AYA in Almaty, 

 
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Kazakhstan. We plan to recruit 168 AYA and randomize them 1:1 to the intervention 
and control arms. Eligible participants will be AYA between the ages of 16-24, report 
previous sex with another individual in the past year, not be living with HIV or have 
unknown HIV status, and reside in Almaty, Kazakhstan. Participants will be recruited 
through announcements promoted via websites and social media accounts, including 
those operated by local youth organizations. Announcements will be posted in both 
Russian and Kazakh languages. The announcements will include a link connecting 
AYA to an online screening survey. The link will remain active until 168 eligible AYA 
have enrolled. Eligible AYA will be invited to join the online cohort and complete 
informed consent online. For adolescents under 18, we are requesting a waiver of 
parental permission because the study is minimal risk and under Kazakh law 
adolescents 16 and older are allowed to obtain an HIV test without parental 
permission. Once enrolled, AYA will be electronically randomized to a study arm to 
complete a baseline survey and receive intervention or control content.   
We will conduct a pilot RCT comparing the crowdsourced stigma reduction and self-
testing intervention to standard AIDS Center messaging and test the feasibility and 
acceptability of the intervention. AYA will be recruited via flyers and from local youth 
organizations in Kazakhstan. We aim to recruit 168 AYA and randomize 1:1 to the 
intervention and control arms. Eligibile AYA will 1) be between 16-24 years old, 2) 
have had sex in the past year, 3) not be living with HIV or have unknown HIV status, 
4) reside in Almaty, Kazakhstan, 5) speak Russian or Kazakh, and 6) own a 
smartphone. To establish linkage for follow-up surveys, unique ID and access codes 
will be issued to each participant. Participants’ phone numbers, email addresses, and 
social media account IDs will be collected as contact information for follow-up.  
3.3.5 Recruitment Procedure 
AYA will be recruited through flyers, email, and social media accounts operated by 
youth organizations in Kazakhstan. Interested participants will complete an online 
eligibility screening survey. If eligible, participants will progress to the informed 

 
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consent screen, where they will read information about the study and be asked to 
provide informed consent. Contact information for study staff will be provided in case 
participants have any questions about the study. Because the study is minimal risk 
and Kazakh law allows adolescents ages 16 and older to order HIV-test kits without 
parental permission, we are requesting a waiver of parental permission to participate 
in the pilot RCT. Once individuals provide informed consent, they will complete a 
baseline survey and be randomized 1:1 to receive the digital intervention content or 
the standard AIDS Center content. In both arms, after the content is presented, there 
will be a link provided to order an HIV self-test kit from Columbia University’s Global 
Health Research Center of Central Asia’s (GHRCCA’s) website, where AYA will input 
the address they would like to receive the test at into the order form. (This address 
may be a secure public mail box (similar to Amazon locker) and does not need to be 
their home address.)  
Participants will be asked for their email addresses and/or phone numbers as contact 
information for follow-up surveys. Participants in the intervention arm will be sent 
intervention content once a week for one month via Qualtrics link. All participants will 
be sent follow-up surveys through Qualtrics at the one month and three month 
periods after baseline completion. Participants who do not complete the follow-up 
survey within a week will be sent an email and/or text message reminding them to 
complete the survey. All individuals who enroll in the study will receive ~$10 USD for 
each assessment as a phone card or gift card. Those who complete all surveys will 
be given an opportunity to win a small prize through a raffle.  
Participants ordering an HIV test will receive a message via WhatsApp using 
standardized methods to submit a photo of their HIV test result. Participants can 
submit photos of HIV self-test results to confirm HIV test uptake at any time after 
enrollment. 
Any persons with newly identified HIV infection will be referred for treatment at the 
Almaty AIDS Center in accordance with standard clinical procedures.  

 
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3.3.6 Baseline Questionnaire 
After enrollment, participants will complete a brief self-administered online baseline 
questionnaire. Study staff will be available to assist in the event of confusion about 
specific questions. The questionnaire will contain items including sociodemographics, 
HIV testing history, HIV stigma, HIV knowledge, sexual history, sexual orientation, 
substance use, social media use, and sources of information. Contact information will 
be obtained for the participants, including phone number, email address, and social 
media IDs. The survey will take about 30-60 minutes to complete. 
3.3.7 Intervention Content 
After completing the online baseline survey, participants will be randomized to 
receive the digital crowdsourced intervention or standard of care (AIDS Center 
materials). Participants will view the materials online (via Qualtrics) and will then be 
directed to a page with a link where they can order HIV self-test kits. Participants will 
be sent one link a week for one month to view intervention or standard of care 
materials. 
3.3.8 Follow-up surveys 
One month and three months after completing the baseline survey, participants will 
be sent follow-up surveys containing the same items that were in the baseline survey. 
Each survey will take approximately 30-60 minutes to complete.  
3.3.9 HIV Testing and Linkage to Care 
After viewing intervention content or standard of care content, participants will be 
directed to a page with a link where they can order HIV self-test kits via GHRCCA’s 
secure web portal. Participants may order a test kit at any point between baseline 
and the 3-month follow-up. Test kits will be sent in a plain box that does not reveal 
what is inside. Participants receiving a test kit will be sent a follow-up message via 
WhatsApp using standardized methods that have been used in other studies to 
electronically submit their test results. Participants who test positive for HIV will be 

 
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contacted by research staff to facilitate referral to HIV confirmatory testing and care 
at the city AIDS Center. 
3.3.10 Qualitative Interviews 
At the end of the study, we will conduct qualitative interviews with AYA (n=20), staff of 
youth partner organizations (n=5), AIDS Center staff (n=5), and web portal technicians 
(n=2). This will enable us to identify multi-level factors and processes that enhance or 
diminish intervention implementation, as well as organizational capacity. We will also 
identify facilitators and barriers for sustaining intervention components over time. All 
interviews will be audio-recorded and transcribed.  
3.3.11 Data analyses 
1) Primary Outcomes: The impact of the intervention will be evaluated based on the 
change in stigma score for each study group (follow-up stigma score minus baseline 
stigma score). Change in HIV stigma from baseline to follow-up periods will be 
calculated and compared between the intervention and control arms using multi-level 
linear mixed models. 
2) Secondary Outcomes: We will use logistic regression to compare HIV testing 
uptake (i.e., ordered HIV self-test from website) during the 3-month period between 
individuals in the intervention arm vs. the control arm. We will also use logistic 
regression to compare differences in self-reported HIV test uptake and linkage to HIV 
care (for those with a positive HIV rapid test result).  
We will also assess feasibility and acceptability of the intervention. 

 
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4 Ethical Considerations 
4.1 Risk Analysis 
4.1.1 Risk to the participants 
The primary risks to participants are psychological discomfort from answering 
sensitive questions and loss of confidentiality. To address these issues, participants 
will be informed that they can skip any question they do not feel comfortable 
answering. Participants contact information will also be stored in a secure, password-
protected database that is only accessible by authorized research staff. In addition, 
boxes containing HIV self-test kits will be plain boxes that do not indicate the 
contents of the box. Participants may choose to have the boxes mailed to a secure 
public mailbox where they can pick-up the test instead of having it mailed to their 
home address.  
4.1.2 Benefits of the study 
Participants will have access to order HIV self-tests, which they may not have 
previously been aware of. Participants may also experience lower levels of stigma 
due to their participation in the study. For individuals who test HIV positive, they will 
have the benefit of research staff to help link them to follow-up care. Through their 
participation, participants may also contribute to the development of an HIV stigma 
reduction and self-testing intervention that can be distributed more broadly in 
Kazakhstan to help the larger population of AYA. 
4.1.3 Alternatives to Participation 
Participants may choose not to participate in the study or drop out of the study at any 
time and request to have their data removed from the study database. 

 
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4.1.4 Compensation 
Participants will be compensated for their time and effort based on compensation 
rates used in similar studies. Participants will receive approximately $10 USD for 
completion of each of the surveys and for the interviews. In addition, participants 
completing all follow-up surveys will be entered in a raffle to win small prizes.  
4.2 Confidentiality 
To minimize risk, we will employ staff members who have been trained in human 
subjects protections and HIV pre- and post-test counseling. Study staff have had 
many years of experience conducting HIV research. The study consent form will 
inform participants of confidentiality procedures. Participants will be told that they 
may decline to answer questions or may withdraw from the study at any time.  
For the baseline and follow-up assessments, all data will be directly entered online 
into Columbia University School of Social Work’s Qualtrics system. Surveys will be 
tested to ensure accuracy, completeness, and internal consistency. Upon completion 
of the study, a dataset that contains only non-identifiable data will be downloaded for 
analysis in statistical software programs. During collection of the data, all data will be 
transmitted securely using SSL (TLS) 128-bit encryption across the internet. SSL 
provides users with the assurance of access to a valid site and prevents data 
interception or tampering with information. Data will be located on a secured server 
at Columbia University. Access to the data will be password protected. 
We will use standardized methods for HIV testing photo verification that have been 
used in other studies. WhatsApp has secure end-to-end encryption using a Signal 
protocol. This ensures that only authorized research staff will be able to see the 
photo and any chat messages between participants and research staff. End-to-end 
encryption prevents third parties and WhatsApp from having access to messages or 
calls. Even if encryption keys from a user’s device are ever physically compromised, 
they cannot be used to decrypt previously transmitted messages. In addition, the 

 
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photos submitted will not be labeled with any identifying information. They will simply 
be a photo of a test result. 
No presentation or publication of the study results will refer to participants 
individually. Results will be reported in aggregate form. Exceptions to confidentiality 
for participants are those required by law and include reports of child or elder abuse 
and the threat of suicide or homicide. Although we are not asking questions about 
child or elder abuse and do not expect any such instances to be reported, 
participants will be informed of these exceptions in the informed consent process. 
4.3 Data and Safety Monitoring Procedures 
The study processes will be monitored on a weekly basis. The study team will review 
all the collected data, check the study procedures, and discuss study problems and 
reported adverse events (if any) weekly. In addition, the recruitment and 
randomization procedures for both arms will be double-checked. 
4.4 Compliance 
Drs. Alissa Davis and Gaukhar Mergenova will lead the implementation of the study 
and overall study coordination. Drs. Davis and Mergenova will be responsible for 
overseeing all study procedures and for research and fiscal administration. The 
research team will communicate weekly to discuss the design, data analysis, subject 
safety, and any administrative issues. All research results will be shared with Co-PIs, 
key personnel, and consultants. The Co-PIs will work together to discuss any 
challenges in the research project. 
4.5 Participant Withdrawal 
Participants will be informed that they may withdraw from the study at any time 
without any consequences. 

 
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4.6 Institutional review board 
The protocol for the proposed research will be reviewed and monitored by the 
Columbia University IRB (FWA00003831) and the Al-Farabi Kazakh National 
University IRB (FWA00031261). 
4.7 Informed consent 
All participants in this study will provide informed consent prior to participation in any 
research procedures. Participants will be well informed about the purpose of this 
study, potential risks of the study, and the research procedures conducted during the 
study. Participants will complete informed consent online through Columbia 
University School of Social Work’s Qualtrics platform. For adolescents under 18, we 
are requesting a waiver of parental permission because the study is minimal risk and 
adolescents 16 and older are allowed to obtain an HIV test without parental 
permission in Kazakhstan. 
5 Future Use 
5.1 Contact for future research studies 
During the informed consent process, participants will be asked if they would like to be 
contacted for future research studies. Participants who give permission to be contacted 
will have their contact information retained and may be contacted by the research team 
if they conduct future research studies among this population. 
5.2 Contact for future research studies 
Participant research data will be retained for future data analysis by the research team. 
Per NIH guidelines on data sharing, the research team will share data with any other 
Columbia University researcher who has obtained IRB approval to access the data and 
has proposed a specific research question for data analysis. The research team will 
also share data with any outside researcher who has obtained IRB approval to access 
the data, has a signed Data Use Agreement between Columbia University and their 

 
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home institution, and has proposed a specific research question for data analysis.