Data Collection for the UCLA HOPE Study

Data CollectionThe following Q&A is for the UCLA Social Network Health Study.

What kind of questions should I expect to see in the baseline questionnaires?

We ask participants to complete an online health survey at the start of the study and follow up with the same survey after the study has been completed, at three different time intervals (3 months, 6 months, and 12 months). There are nearly 100 multiple choice questions on the survey that inquire about the individual’s internet use, behavioral habits, alcohol and drug use, health beliefs and sexual health. These questions are designed to understand the participant’s health practices and perspectives. The survey takes approximately 10 to 15 minutes to complete and each participant receives an online gift card each time they complete the survey.

Am I allowed to let someone else help me answer the questions?

The survey questions are related to an individual’s health decisions and can be best answered by that individual. Through these surveys, we are interested in learning if/how a participant’s health choices and habits have changed as a result of participating in the study; therefore, it is best that participants answer the questions on their own to the best of their ability. If a question is unclear, they are welcome to reach out to us so that we can help clarify any confusion.

Who will be allowed to see how I respond?

Only authorized researchers will have access to the survey responses. Protection of personal and confidential information of our research participants is one of our top priorities. Throughout the study, we will be taking strict measures to maintain participants’ confidentiality by collecting and storing the data in a secure and encrypted manner. When the participants take the first survey, they will be asked to create a unique code and all shared data will then be stored using that unique code to prevent the data from being identifiable.

Does the way that I respond affect how I will be grouped with people later? What is the purpose of the data collection?

Responses to the baseline survey will not determine which group participants are assigned to. Once we receive the completed surveys, participants will be randomized to either a control group or an intervention group. The data collected from this longitudinal study will allow researchers to analyze how effective the online community –based intervention was in helping participants make better health decisions over the course of time.

How long will this information be in your system?

The data retrieved from the study will be stored for future use by the Principal Investigator and/or research team. It is important to re-emphasize that any information that is obtained in connection with this study and that can identify participants will remain confidential, including the results of home HIV tests, and be protected by a Certificate of Confidentiality. A Certificate of Confidentiality is issued by the National Institutes of Health (NIH) to protect the privacy of research subjects. It allows the researchers or others who have access to medical records to refuse to disclose identifying information in any civil, criminal, administrative, legislative, or other proceedings, whether at the federal, state, or local level.

Dialogue Between Participants in the UCLA HOPE Study

The following Q&A is for the UCLA Social Network Health Study.

dialogueWhat kind of conversations are HOPE peer leaders trained to have with each other and with study participants?

In the HIV intervention group, the peer leaders are trained to discuss topics related to HIV prevention and testing as well as stigma and cultural barriers associated with HIV. The control group peer leaders are also trained to discuss topics related to stigma and cultural barriers, but within the broader realm of general health, and not specifically HIV. The control group training is focused entirely on the components of healthy living, such as diet and exercise, mental health, alcohol and drug abuse, and so on. Above all, peer leaders from both groups are taught through examples and activities how to engage the participants in a friendly and approachable manner, using Facebook tools.

The peer leaders report to health experts once a week to go over any challenges and obstacles they may have experienced communicating with the participants and we are prepared to provide support to them as needed.

Have HOPE peer leaders been discussing current events? Have you noticed a response among the peer leaders to the recent tragedy at the Pulse nightclub in Orlando, Florida?

The peer leaders are currently preparing for the study by keeping the conversation active in the private Facebook groups. They spent time with each other during the three training sessions and have continued the conversation online since the training ended. The topics have ranged from pop culture, health, life events, LGBT issues, and HIV-related stigma, so it was not surprising that the tragedy in Orlando night sparked an exchange on the Facebook walls of both groups. The reactions ranged from sadness to helplessness and anger. It took a day or two for someone to write a post on the tragedy, and eventually many responded with their thoughts. Several peer leaders also posted details of gatherings and vigils that were being held in honor of lives lost at Pulse. The group was reflective and united in their thoughts.

What topics are “off limits?” Is there an enforced code of netiquette for study participants or other rules of discussion that peer leaders should know about?

Throughout the training sessions, we have stressed that peer leaders are advised to not provide medical information to the participants. If a participant appears to be experiencing risk that requires assistance or reporting self-harm, peer leaders have been told to contact researchers immediately so that we can connect the at-risk individual(s) to the proper medical and clinical services, if needed.

What are the most common topics of discussion among study participants?

The conversations among the participants and peer leaders developed organically in the pilot study throughout the 12-week period and we are expecting the same for the current study. Once the study begins, we are anticipating the topics to revolve around current events, pop culture, HIV and health, relationships, life challenges, and so on. The researchers do not intervene or steer the conversation in any way.

Meet the UCLA HOPE Study Trainers

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Left: Peer leaders for the UCLA HOPE Study (Left to Right: Nijeul Porter, Noah Kojima, Jaih Craddock). Right: Nijeul Porter discussing health-related stigma and HIV.

During training, what major “facts” and “fibs” about HIV will we cover?

We encounter several myths around HIV and AIDS on a daily basis. To make sure that our peer leaders are well informed to tackle these challenges, we will be going over topics related to HIV transmission, prevention, and treatment throughout the three training sessions. The peer leaders will frequently participate in interactive “Facts and Fibs” group activities that cover topics discussed in previous sessions, such as which methods can put an individual at risk for HIV (e.g., unprotected sex) and which are just myths (e.g., insect bites).

Which UCLA experts will I have an opportunity to meet during the training sessions? What are their backgrounds?

Our trainers are engaging speakers who are knowledgeable about medicine, public health, and community organizing. We invited a total of four dedicated trainers to work with our peer leaders: Noah Kojima, a UCLA medical student, Jaih Craddock, a PhD candidate in the school of Social Work at the University of Southern California, Nijeul Porter, an LGBT youth and community organizer and educator, and Adam Carl Cohen, a PhD in the UCLA Department of Public Health. Dr. Sean Young, Principal Investigator, will also be involved in facilitating the training sessions and welcoming the peer leaders.

What will we learn about HIV testing and talking about HIV tests with others?

We will discuss the basics of how HIV tests work and the types of HIV testing that are available. The trainers will also demo steps for using a confidential, at-home HIV testing kit that will be offered to all participants for free throughout the study. This will allow the peer leaders to their pass knowledge along to the participants effectively and answer any concerns. The peer leaders will also learn about situations that are conducive for talking to someone about getting tested and suggested methods on how to communicate with individuals about getting tested.

What will we learn about HIV prevention and talking about HIV prevention with others?

In order to discuss HIV prevention, we will first revisit how HIV is transmitted and then discuss recommended steps for reducing the risks, such as limiting the number of sex partners, correct and consistent condom use, getting tested and treated for STIs (sexually transmitted infections), and participating in risk-reduction programs. We will also dive into best practices for engaging participants on HIV topics in a private Facebook group through collaborative and interactive group exercises.

Will we learn about other STIs, or will the discussion be totally focused on HIV?

Sexually transmitted infections are associated with an increased risk of contracting and transmitting HIV. For the purpose of this study, our discussion will primarily focus on STIs in the context of HIV. However, the peer leaders may have additional questions on STI specific topics that we will be happy to answer.

Training Peer Leaders for the UCLA HOPE Study

Picture1The following Q&A is for the UCLA Social Network Health Study.

What is involved in the HOPE Study Peer Leader Training Session?

Peer leaders define the results of the HOPE Study. For a 12-week period, our peer leaders are in direct contact with study participants in a Facebook group and they essentially drive the conversation around health, stigma, and HIV. Therefore, it is important that peer leaders are equipped with the proper knowledge and communication tools needed to interact with the participants. We aim to accomplish this through training sessions taught by health experts in the medical and research fields. In the intervention group, topics range from HIV epidemiology, testing, prevention, and stigma; in the control group, peer leaders learn about general health such as stress reduction, diet and exercise, and so on. Both groups are taught technical aspects of social media communication methods.

How many training sessions are peer leaders expected to participate in?

The peer leaders participate in a three-hour training session for three consecutive Sundays at the UCLA campus. The peer leaders are randomized to either an intervention group or a control group beforehand and each group is taught by the same trainers at different time points. The three hours go by fairly quickly because the trainers present the materials in a very engaging manner and incorporate group activities throughout the session. The peer leaders are expected to attend all three sessions in order to continue participating in the study.

Is there something specific that peer leaders need to bring with them to each session? Is there homework?

We do not require the peer leaders to bring anything to the session other than an open mind and an empty stomach (because we provide snacks and drinks!). We also provide laptops to each participant during the session so they can participate in group activities that are designed to take place in a private Facebook group. The in-class activities are supplemented with weekly assignment to encourage the peer leaders to be comfortable communicating about health and stigma in an online platform. This helps the research team assess each individual’s ability to be an effective peer leader for the HOPE Study.

Do peer leaders have to be experienced in giving public presentations or giving speeches?

The peer leaders that are recruited for HOPE Study are already active community members that are experienced and/or have a passion for health outreach. Those who complete the training sessions and successfully demonstrate their ability to be an effective peer leader are provided with a certificate of achievement that many have found to be helpful in attaining community outreach jobs in the past.

Will transportation and/or parking assistance be provided?

We arrange for paid parking at the UCLA campus in lots closest to the training venue, which is typically a workspace or a conference room inside a library. The campus is also easily accessible via public transportation.

HIV/AIDS Risk Reduction Strategies: How to Get Involved

HIV + AIDS RibbonsThe following Q&A is for the UCLA Social Network Health Study.

What percentage of the U.S. population has HIV or AIDS? How is this part of the population currently tracked?

The Centers for Disease Control and Prevention (CDC) estimates that more than one million people are living with HIV in the United States and almost 1 in 8 people are unaware of their infection. Gay, bisexual, and other men who have sex with men are at the highest risk; by race, blacks/African-Americans and Hispanics/Latinos are disproportionately affected by HIV.

At the end of 2010, 45% of the estimated 33,015 new AIDS diagnoses were in the South, followed by the Northeast (24%), the West (19%), and the Midwest (13%). An estimated 13,712 people with an AIDS diagnosis died in 2012, and approximately 658,507 people in the United States with an AIDS diagnosis have died overall.

CDC’s National HIV Surveillance System is the primary source for monitoring HIV trends in the United States.

What is an HIV risk reduction program? Can you provide some examples?

HIV risk reduction programs exist to address and reduce risk factors associated with HIV for individuals through counseling, education, and promotional activities. Such comprehensive programs exist to help people make healthy decisions, such as negotiating condom use or discussing HIV status. For example, the Children’s Hospital of Los Angeles developed a risk reduction program in response to growing concern about HIV infection among adolescents and young adults. Components of this program include prevention services for at-risk youth, as well as clinical research and capacity-building assistance for providers

What are the most common misconceptions about HIV/AIDS?

Unfortunately, I come across several myths and misconceptions around HIV/AIDS on a daily basis. Examples include:

  • HIV is the same as AIDS.
  • AIDS can be spread through casual contact with an HIV-infected individual.
  • HIV cannot be transmitted through oral sex
  • HIV is transmitted by mosquitoes.
  • HIV affects only homosexual men and drug users.
  • HIV antibody testing is unreliable.

The UCLA Social Network Study, commonly known as the HOPE Study, is designed to address such misconceptions through education and open dialogue. Our aim is that studies such as this will help overcome barriers, eliminate miscommunication, and in turn help to prevent HIV infection.

I think your team is doing important research. How can I volunteer at the Center? How can I spread the word about the importance of this kind of data that is collected?

We have several exciting projects going on at UCLA Center for Digital Behavior and UC Institute for Prediction Technology focusing on leveraging social media to tackle public health concerns. To find out more about current studies and publications, please visit our websites. We welcome your interest and feedback. For information about volunteer positions or how to support our work, please email us at info@digitalbehavior.ucla.edu.