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.

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