Methods for Improving Consent and Survey Completion in Online HIV Prevention Research with Young Men Who Have Sex with Men
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Abstract
Background
The internet is effective in reaching participants for data collection in public health, especially among hard-to-reach populations like young men who have sex with men (YMSM). When engaging participants without personal interaction, it is important to ensure that participants understand risks of the study and develop innovative ways to retain participants to reduce nonresponse bias. From previous research, we know that participants spend an average of 28 seconds on the consent page, suggesting that the participants do not fully digest the informed consent information; in our most recent online survey, 21% of 9164 respondents who consented to take the survey did not finish.
Objective
We used online focus group discussions to explore alternative methods for delivering consent information and maximizing retention of YMSM throughout the length of an online survey. The alternate methods explored in these focus groups are being developed for a randomized controlled trial to test their efficacy.
Methods
We conducted five synchronous (“chat room”-based) online focus groups in July and August of 2013 with YMSM between the ages of 18 and 29 living in the United States. Participants were recruited via banner advertisements placed on Facebook and Black Gay Chat. Topics of discussion during the focus groups included previous experiences with online research and consent, privacy concerns, alternate online consent mechanisms, and innovative incentives to promote survey completion.
Results
Most participants had fewer concerns about their privacy in online research compared to in-person research, especially when the research is conducted by an institution perceived to be reputable. Participants were more willing to be truthful with sensitive topics such as drugs and sex when participating in online research, compared to in-person research. All participants indicated that they did not fully read the consent form for the focus groups. Suggestions for effective alternate consents included videos and a brief consent form with an outline of key points. The most important factors mentioned by participants for an effective video consent included brevity, high production value, legitimacy of the research institution, entertainment value, relatability of the presenters, and an appeal to altruism. To maintain engagement after consent, most participants agreed that it is important for researchers to offer an incentive for any study longer than 15 minutes. Although money was mentioned as an effective motivator in each focus group, alternate incentives included receiving access to interesting statistics, personalized messages of gratitude from the researchers emphasizing the importance of the project, messages speaking to altruism, a survey progress bar, sex appeal in the survey branding, and a dashboard comparing the participant’s data to data of others at the end of the survey.
Conclusions
YMSM are frequently targeted for online HIV prevention surveys and are becoming more difficult to engage in research because of high exposure to surveys and long standard consent forms. New technologies offer innovative opportunities to improve ethical conduct and increase retention of participants in web-based research. These should be exploited in all areas of online health research, especially HIV prevention among YMSM.
The internet is effective in reaching participants for data collection in public health, especially among hard-to-reach populations like young men who have sex with men (YMSM). When engaging participants without personal interaction, it is important to ensure that participants understand risks of the study and develop innovative ways to retain participants to reduce nonresponse bias. From previous research, we know that participants spend an average of 28 seconds on the consent page, suggesting that the participants do not fully digest the informed consent information; in our most recent online survey, 21% of 9164 respondents who consented to take the survey did not finish.
Objective
We used online focus group discussions to explore alternative methods for delivering consent information and maximizing retention of YMSM throughout the length of an online survey. The alternate methods explored in these focus groups are being developed for a randomized controlled trial to test their efficacy.
Methods
We conducted five synchronous (“chat room”-based) online focus groups in July and August of 2013 with YMSM between the ages of 18 and 29 living in the United States. Participants were recruited via banner advertisements placed on Facebook and Black Gay Chat. Topics of discussion during the focus groups included previous experiences with online research and consent, privacy concerns, alternate online consent mechanisms, and innovative incentives to promote survey completion.
Results
Most participants had fewer concerns about their privacy in online research compared to in-person research, especially when the research is conducted by an institution perceived to be reputable. Participants were more willing to be truthful with sensitive topics such as drugs and sex when participating in online research, compared to in-person research. All participants indicated that they did not fully read the consent form for the focus groups. Suggestions for effective alternate consents included videos and a brief consent form with an outline of key points. The most important factors mentioned by participants for an effective video consent included brevity, high production value, legitimacy of the research institution, entertainment value, relatability of the presenters, and an appeal to altruism. To maintain engagement after consent, most participants agreed that it is important for researchers to offer an incentive for any study longer than 15 minutes. Although money was mentioned as an effective motivator in each focus group, alternate incentives included receiving access to interesting statistics, personalized messages of gratitude from the researchers emphasizing the importance of the project, messages speaking to altruism, a survey progress bar, sex appeal in the survey branding, and a dashboard comparing the participant’s data to data of others at the end of the survey.
Conclusions
YMSM are frequently targeted for online HIV prevention surveys and are becoming more difficult to engage in research because of high exposure to surveys and long standard consent forms. New technologies offer innovative opportunities to improve ethical conduct and increase retention of participants in web-based research. These should be exploited in all areas of online health research, especially HIV prevention among YMSM.
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