Case Study: An Ethics Case Study of HIV Prevention Research on Facebook: The Just/Us Study

Bull, Sheana; Breslin, Lindsey T.; Wright, Erin; Black, Sandra R.; Levine, Deborah; Santelli, John

doi:10.1093/jpepsy/jsq126

Cited by 80 publications

(74 citation statements)

References 25 publications

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“…15,16 Previous studies have asked young people about their social media engagements, though often this research has focused on specific "at-risk" groups, such as adolescent parents. 17 Various sexual health interventions have engaged young people via SNS and found some success in doing so, [18][19][20] also noting the difficulties such as the time and resources required to do this well. 18 Research on utilising social media for promoting sexual health typically takes an instrumental approach, asking how public health can reach this population without necessarily consulting young users of SNS.…”

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confidence: 99%

“…2,13,23 Sheana Bull cautions researchers to consider whether health promotion and/or research is welcome in such spaces, and to be mindful of the ethical implications of these interventions. 20 Evers and colleagues further caution that sexual health promotion agencies entering the space of social media and SNS "should not expect to retain control of the meaning and the message" of health promotion content. 24 Social network sites are sites of self-presentation and identity formation.…”

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confidence: 99%

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“It would be weird to have that on Facebook”: young people's use of social media and the risk of sharing sexual health information

Byron¹,

Albury

Evers

2013

Reproductive Health Matters

105

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In today's media environment, information is not simply passed from producers to consumers, but is mediated by participants of new media cultures, including information on sexual health. In focus groups held in Sydney and regional Australia in 2011, we asked young people aged 16-22 about the potential for sexual health promotion via Facebook and other social media. Our findings point to the complex ways in which young people use social media, and the unlikelihood of traditional take-home sexual health messages having traction in social media spaces. Five key aspects which emerged were: the participatory culture of social network sites; the stigma of sexual health, especially sexually transmitted infections (STIs); young people's careful presentations of self; privacy concerns; and the importance of humour in sexual health messaging. Fears of bullying and gossip (or 'drama') were also likely to prevent the dissemination of sexual health messages in this environment. However, humorous online videos were noted by participants as a significant way to avoid stigma and enable the sharing of sexual health information. The young people in our study were interested in sexual health information, but did not want to access it at the cost of their own sense of comfort and belonging in their social networks. Any sexual health promotion within these sites must be understood as a site-specific intervention.

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confidence: 99%

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confidence: 99%

“It would be weird to have that on Facebook”: young people's use of social media and the risk of sharing sexual health information

Byron¹,

Albury

Evers

2013

Reproductive Health Matters

105

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“…Research in the interactive domain may involve recruiting subjects via SoMe channels such as Facebook (e.g. Balfe et al, 2012;Bull et al, 2011Bull et al, , 2013Child et al, 2014;Kapp et al, 2013;Leonard et al, 2014) or be implemented through SoMe channels to answer specifi c questions (e.g. Quinton, 2013), with subjects being recruited and asked to use SoMe to record refl ections and experiences on blogs or other platforms (e.g.…”

Section: Social Media As Datamentioning

confidence: 99%

Perspectives on social media in and as research: A synthetic review

Lafferty

Manca

2015

International Review of Psychiatry

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With the growth of social media use in both the private and public spheres, researchers are currently exploring the new opportunities and practices offered by these tools in the research lifecycle. This area is still in its infancy: As methodological approaches and methods are being tested - mainly through pragmatic and exploratory approaches - practices are being shaped and negotiated by the actors involved in research. A further element of complexity is added by the ambivalent status of social media within research activities. They can be both a tool - for recruitment, data collection, analysis - and data - as what constitutes the corpus to be analysed - both in an observational and interactive domain. This synthetic analysis of the literature is aimed at identifying how social media are currently being used in research and how they fit into the research lifecycle. We identify and discuss emerging evidence and trends in the adoption of social media in research, which can be used and applied by psychiatry research practitioners as a framework to inform the development of a personalized research network and social media strategy in research.

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“…Initial research has suggested that participants in online studies should be reminded and asked for consent at multiple time points throughout the study, so they do not forget that they are participating in research while using the technology. 2 The decision of how to best inform consumers of the risks associated with using technologies is an important one that still needs to be addressed. …”

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confidence: 99%

“…Facebook) has created opportunities for researchers to use these technologies in public health research. [1][2][3][4] Scientific, health and engineering standards should inform decision-makers on how and when researchers use mobile technologies for health research and practice, yet few of these guidelines exist. 5 This commentary aims to create initial recommendations to guide researchers' decisions on development and use of mobile technologies for public health research.…”

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confidence: 99%

Incorporating guidelines for use of mobile technologies in health research and practice

Young¹,

Holloway²,

Swendeman³

2014

International Health

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This commentary aims to create initial recommendations to guide researchers' decisions on the development and use of mobile technologies for public health research. We recommend that mobile technologies for public health research should be scalable and sustainable; draw on social, psychological and/or behavioral theoretical models; be able to be integrated with multiple communication devices; incorporate social network and/or geographic metrics and take a community-based participatory approach to development and implementation. All of these approaches are discussed.Keywords: Guidelines, Health research, mHealth, New technologies, Use standards Development of mobile technologies and online social networking sites (e.g. Facebook) has created opportunities for researchers to use these technologies in public health research. [1][2][3][4] Scientific, health and engineering standards should inform decision-makers on how and when researchers use mobile technologies for health research and practice, yet few of these guidelines exist. 5 This commentary aims to create initial recommendations to guide researchers' decisions on development and use of mobile technologies for public health research. Scalable and sustainableResearchers wanting to integrate mobile technologies into public health efforts have numerous technology choices. As capital is limited, focus should be placed on identifying scalable and sustainable technologies. Scalable technologies are typically built on and utilize 'platforms,' such as websites, tablets or phone applications with reusable components. For example, if multiple functions are needed for a mobile health smartphone-based intervention (e.g. a social networking/communication and geo-spatial tracking technology), one can either create each of these components or search for pre-existing and publicly-available technology equivalents. 'Opensource' technologies are platforms that can enable developers to freely build upon each other's efforts, minimizing redundant application development. 6 However, many current mHealth applications do not allow data to be shared with other technologies. We recommend that public health researchers seek to adopt scalable platform technologies to save resources and development time, while increasing longevity and utility of the technology.It is equally important that researchers choose to use technologies that are sustainable, or will maintain user participation and engagement. Although mobile technologies often receive tremendous acclaim upon initial release, many fail to gain a sustainable user base and become obsolete. For example, choosing a technology because it is currently making news headlines and therefore thought to be popular is not an approach that facilitates sustainability. No current data exist on whether to and how to categorize a technology as sustainable, especially as the definition of sustainability in research studies might be different from how sustainability is defined in other settings. This is an important issue that needs to be addressed giv...

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Case Study: An Ethics Case Study of HIV Prevention Research on Facebook: The Just/Us Study

Abstract: Online social networks are growing in popularity. Conducting research on social media sites requires deliberate attention to consent, confidentiality, and security.

Cited by 80 publications

References 25 publications

“It would be weird to have that on Facebook”: young people's use of social media and the risk of sharing sexual health information

“It would be weird to have that on Facebook”: young people's use of social media and the risk of sharing sexual health information

Perspectives on social media in and as research: A synthetic review

Incorporating guidelines for use of mobile technologies in health research and practice

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