A retrospective analysis of NIH-funded digital health research using social media platforms

AbstractSome health research studies recruit participants through electronic mechanisms such as the placement of messages on social media platforms. This raises questions for ethics committee oversight, since effective social media campaigns might involve the production and dissemination of hundreds of contemporaneous messages. For the Narrative Experiences Online (NEON) study, we have developed nine principles to control the production and dissemination of promotional material. These have been approved by an ethics committee and enable the audit of our recruitment work. We propose that the drafting for approval of recruitment principles by health research studies may, in many cases, strike an appropriate balance between enabling ethical oversight of online recruitment work and the potential burden of message review.

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Youth Study Recruitment Using Paid Advertising on Instagram, Snapchat, and Facebook: Cross-Sectional Survey Study (Preprint)

10.2196/preprints.14080 ◽

2019 ◽

Author(s):

Kelsey Lynett Ford ◽

Tashuna Albritton ◽

Tara A Dunn ◽

Kacy Crawford ◽

Jessica Neuwirth ◽

...

Keyword(s):

Social Media ◽

Health Research ◽

Conversion Rate ◽

Cost Effective ◽

Cross Sectional ◽

Attitudes And Behaviors ◽

Study Recruitment ◽

Social Media Platforms ◽

And Behaviors ◽

Youth Study

BACKGROUND The use of paid social media advertising for targeted study recruitment is an effective strategy in health research and evaluation, specifically to reach diverse youth participants. Although the literature adequately describes the utility of Facebook in recruitment, limited information exists for social media platforms that are more popular with youth, specifically Instagram and Snapchat. OBJECTIVE This paper outlines a paid advertising approach using Instagram, Snapchat, and Facebook to evaluate a statewide youth marijuana prevention campaign. The objective of this study was to compare recruitment metrics across Instagram, Snapchat, and Facebook for two surveys documenting youth knowledge, attitudes, and behaviors related to retail marijuana in Colorado post legalization. In addition, the study assessed the feasibility of using Instagram and Snapchat as effective additions to Facebook for youth study recruitment. METHODS A social media recruitment strategy was used to conduct two cross-sectional surveys of youth, aged 13 to 20 years, in Colorado. Geographically targeted ads across 3 social media platforms encouraged the completion of a Web-based self-administered survey. Ad Words and Snap Ads were used to deploy and manage advertising campaigns, including ad design, placement, and analysis. Ad costs and recruitment metrics (ie, impressions, link clicks, and conversion rates) were calculated across the three social media platforms. RESULTS Over two 1-month periods, 763,613 youth were reached (ie, impressions), 6089 of them clicked survey links (ie, clicks), and 828 eligible youth completed surveys about knowledge, attitudes, and behaviors related to retail marijuana. Instagram converted 36.13% (803/2222) of impressions to clicks (ie, conversion rate) in the first survey and 0.87% (864/98982) in the second survey. Snapchat generated the most impressions and link clicks, but it did so with the lowest conversion rate for both surveys, with a 1.40% (1600/114,200) conversion rate in the first survey and a 0.36% (1818/504700) conversion rate in the second survey. Facebook maintained a consistent conversion rate of roughly 2% across both surveys, despite reductions in budget for the second survey. The cost-per-click ranged between US $0.25 and $0.37 across the three platforms, with Snapchat as both the most cost-effective platform in the first survey and the most expensive platform in the second survey. CONCLUSIONS Recruitment and enrollment outcomes indicate the use of Instagram and Snapchat, in addition to Facebook, may be a modern, useful, and cost-effective approach to reach youth with surveys on sensitive health topics. As the use of Facebook declines among youth, the use of more popular social media platforms can augment study recruitment for health research and evaluation efforts.

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Digital Health Communication Common Agenda 2.0: An Updated Consensus for the Public and Private Sectors to Advance Public Health

Health Education & Behavior ◽

10.1177/1090198119874086 ◽

2019 ◽

Vol 46 (2_suppl) ◽

pp. 124S-128S ◽

Cited By ~ 3

Author(s):

Robert S. Gold ◽

M. Elaine Auld ◽

Lorien C. Abroms ◽

Joseph Smyser ◽

Elad Yom-Tov ◽

...

Keyword(s):

Public Health ◽

Social Media ◽

Health Communication ◽

Digital Health ◽

Public And Private ◽

The Public ◽

Social Media Platforms ◽

Use Of The Internet ◽

Legal Frameworks ◽

Common Agenda

Despite widespread use of the Internet and social media platforms by the public, there has been little organized exchange of information among the academic, government, and technology sectors about how digital communication technologies can be maximized to improve public health. The second Digital Health Promotion Executive Leadership Summit convened some of the world’s leading thinkers from across these sectors to revisit how communication technology and the evolving social media platforms can be utilized to improve both individual and population health. The Summit focused on digital intelligence, the spread of misinformation, online patient communities, censorship in social media, and emerging global legal frameworks. In addition, Summit participants had an opportunity to review the original “Common Agenda” that emerged and was published after the inaugural Summit and recommend updates regarding the uses of digital technology for advancing the goals of public health. This article reports the outcomes of the Summit discussions and presents the updates that were recommended by Summit participants as the Digital Health Communication Common Agenda 2.0. Several of the assertions underlying the original Common Agenda have been modified, and several new assertions have been added to reflect the recommendations. In addition, a corresponding set of principles and related actions—including a recommendation that an interagency panel of the U.S. Department of Health and Human Services be established to focus on digital health communication, with particular attention to social media—have been modified or supplemented.

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Looking for Medical Advice in Everyday Digital Spaces: A Qualitative Study of Indians Connecting with Physicians on Facebook

Vikalpa The Journal for Decision Makers ◽

10.1177/02560909211023163 ◽

2021 ◽

pp. 025609092110231

Author(s):

Smeeta Mishra

Keyword(s):

Social Media ◽

Health Promotion ◽

Information And Communication Technologies ◽

Digital Health ◽

Medical Advice ◽

Medical Council ◽

Health Technologies ◽

Neoliberal Governmentality ◽

Social Media Platforms ◽

Digital Spaces

In a world afflicted by COVID-19, many people consult doctors through a digital interface or over the phone, as face-to-face consultations are almost impossible during a lockdown. The Medical Council of India and the NITI Aayog, a policy think tank, formulated new guidelines to empower medical practitioners to practice telemedicine in India in March 2020. Even before the COVID-19 pandemic gripped the world and made digital consultations a necessity in specific cases, academic studies located within a health promotion framework in Western contexts indicated that patients have been very much interested in using social media tools to communicate with their physicians. Previous studies have also highlighted the advantages of information and communication technologies for patient–doctor interaction. Since changes introduced by digital health technologies have primarily been analysed from such health promotion perspectives that often adopt a ‘techno-utopian’ lens ( Lupton, 2013 ), it becomes imperative to critically interrogate how such changes construct specific subjectivities and shape our understandings of health and normative healthcare practices. Specifically, scholars have highlighted how social media platforms and apps act as ‘performative devices’ ( Johnson, 2014 ) that influence ‘everyday management of illness and health’ and help create the ideal of the ‘digitally engaged patient’ ( Lupton, 2013 ). In the Indian context, media reports highlight a growing trend in the use of social media platforms and apps by physicians and patients. However, academic research on such emerging phenomena in this country is still scarce. This exploratory study examines why some Indians connect with physicians on a social media platform such as Facebook, the nature of communication between them and their understandings of health. It uses in-depth interviews and draws upon neoliberal governmentality as a theoretical anchor. The findings show how the internalization of neoliberal values and assumptions are associated with participants’ search for lifestyle and medical advice in everyday digital spaces such as Facebook. This study strives to extend the concept of neoliberal governmentality to performances in everyday digital spaces such as Facebook. In terms of practical implications, the results of the study highlight the critical need for policies that regulate the medical content available in social media spaces. Most importantly, some of the issues highlighted by the participants in this study can help policymakers take adequate precautions while formulating guidelines on digital consultations, especially during pandemics and their aftermath when there is tremendous pressure to promote telemedicine.

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Threats of Bots and Other Bad Actors to Data Quality Following Research Participant Recruitment Through Social Media: Cross-Sectional Questionnaire (Preprint)

10.2196/preprints.23021 ◽

2020 ◽

Author(s):

Rachel Pozzar ◽

Marilyn J Hammer ◽

Meghan Underhill-Blazey ◽

Alexi A Wright ◽

James A Tulsky ◽

...

Keyword(s):

Social Media ◽

Data Quality ◽

Health Research ◽

Data Integrity ◽

Research Participant ◽

The United States ◽

Quality Data ◽

Participant Recruitment ◽

Research Participants ◽

Social Media Platforms

BACKGROUND Recruitment of health research participants through social media is becoming more common. In the United States, 80% of adults use at least one social media platform. Social media platforms may allow researchers to reach potential participants efficiently. However, online research methods may be associated with unique threats to sample validity and data integrity. Limited research has described issues of data quality and authenticity associated with the recruitment of health research participants through social media, and sources of low-quality and fraudulent data in this context are poorly understood. OBJECTIVE The goal of the research was to describe and explain threats to sample validity and data integrity following recruitment of health research participants through social media and summarize recommended strategies to mitigate these threats. Our experience designing and implementing a research study using social media recruitment and online data collection serves as a case study. METHODS Using published strategies to preserve data integrity, we recruited participants to complete an online survey through the social media platforms Twitter and Facebook. Participants were to receive $15 upon survey completion. Prior to manually issuing remuneration, we reviewed completed surveys for indicators of fraudulent or low-quality data. Indicators attributable to respondent error were labeled suspicious, while those suggesting misrepresentation were labeled fraudulent. We planned to remove cases with 1 fraudulent indicator or at least 3 suspicious indicators. RESULTS Within 7 hours of survey activation, we received 271 completed surveys. We classified 94.5% (256/271) of cases as fraudulent and 5.5% (15/271) as suspicious. In total, 86.7% (235/271) provided inconsistent responses to verifiable items and 16.2% (44/271) exhibited evidence of bot automation. Of the fraudulent cases, 53.9% (138/256) provided a duplicate or unusual response to one or more open-ended items and 52.0% (133/256) exhibited evidence of inattention. CONCLUSIONS Research findings from several disciplines suggest studies in which research participants are recruited through social media are susceptible to data quality issues. Opportunistic individuals who use virtual private servers to fraudulently complete research surveys for profit may contribute to low-quality data. Strategies to preserve data integrity following research participant recruitment through social media are limited. Development and testing of novel strategies to prevent and detect fraud is a research priority.

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Threats of Bots and Other Bad Actors to Data Quality Following Research Participant Recruitment Through Social Media: Cross-Sectional Questionnaire

Journal of Medical Internet Research ◽

10.2196/23021 ◽

2020 ◽

Vol 22 (10) ◽

pp. e23021 ◽

Cited By ~ 1

Author(s):

Rachel Pozzar ◽

Marilyn J Hammer ◽

Meghan Underhill-Blazey ◽

Alexi A Wright ◽

James A Tulsky ◽

...

Keyword(s):

Social Media ◽

Data Quality ◽

Health Research ◽

Data Integrity ◽

Research Participant ◽

The United States ◽

Quality Data ◽

Participant Recruitment ◽

Research Participants ◽

Social Media Platforms

Background Recruitment of health research participants through social media is becoming more common. In the United States, 80% of adults use at least one social media platform. Social media platforms may allow researchers to reach potential participants efficiently. However, online research methods may be associated with unique threats to sample validity and data integrity. Limited research has described issues of data quality and authenticity associated with the recruitment of health research participants through social media, and sources of low-quality and fraudulent data in this context are poorly understood. Objective The goal of the research was to describe and explain threats to sample validity and data integrity following recruitment of health research participants through social media and summarize recommended strategies to mitigate these threats. Our experience designing and implementing a research study using social media recruitment and online data collection serves as a case study. Methods Using published strategies to preserve data integrity, we recruited participants to complete an online survey through the social media platforms Twitter and Facebook. Participants were to receive $15 upon survey completion. Prior to manually issuing remuneration, we reviewed completed surveys for indicators of fraudulent or low-quality data. Indicators attributable to respondent error were labeled suspicious, while those suggesting misrepresentation were labeled fraudulent. We planned to remove cases with 1 fraudulent indicator or at least 3 suspicious indicators. Results Within 7 hours of survey activation, we received 271 completed surveys. We classified 94.5% (256/271) of cases as fraudulent and 5.5% (15/271) as suspicious. In total, 86.7% (235/271) provided inconsistent responses to verifiable items and 16.2% (44/271) exhibited evidence of bot automation. Of the fraudulent cases, 53.9% (138/256) provided a duplicate or unusual response to one or more open-ended items and 52.0% (133/256) exhibited evidence of inattention. Conclusions Research findings from several disciplines suggest studies in which research participants are recruited through social media are susceptible to data quality issues. Opportunistic individuals who use virtual private servers to fraudulently complete research surveys for profit may contribute to low-quality data. Strategies to preserve data integrity following research participant recruitment through social media are limited. Development and testing of novel strategies to prevent and detect fraud is a research priority.

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Youth Study Recruitment Using Paid Advertising on Instagram, Snapchat, and Facebook: Cross-Sectional Survey Study

JMIR Public Health and Surveillance ◽

10.2196/14080 ◽

2019 ◽

Vol 5 (4) ◽

pp. e14080 ◽

Cited By ~ 6

Author(s):

Kelsey Lynett Ford ◽

Tashuna Albritton ◽

Tara A Dunn ◽

Kacy Crawford ◽

Jessica Neuwirth ◽

...

Keyword(s):

Social Media ◽

Health Research ◽

Conversion Rate ◽

Cost Effective ◽

Cross Sectional ◽

Attitudes And Behaviors ◽

Study Recruitment ◽

Social Media Platforms ◽

And Behaviors ◽

Youth Study

Background The use of paid social media advertising for targeted study recruitment is an effective strategy in health research and evaluation, specifically to reach diverse youth participants. Although the literature adequately describes the utility of Facebook in recruitment, limited information exists for social media platforms that are more popular with youth, specifically Instagram and Snapchat. Objective This paper outlines a paid advertising approach using Instagram, Snapchat, and Facebook to evaluate a statewide youth marijuana prevention campaign. The objective of this study was to compare recruitment metrics across Instagram, Snapchat, and Facebook for two surveys documenting youth knowledge, attitudes, and behaviors related to retail marijuana in Colorado post legalization. In addition, the study assessed the feasibility of using Instagram and Snapchat as effective additions to Facebook for youth study recruitment. Methods A social media recruitment strategy was used to conduct two cross-sectional surveys of youth, aged 13 to 20 years, in Colorado. Geographically targeted ads across 3 social media platforms encouraged the completion of a Web-based self-administered survey. Ad Words and Snap Ads were used to deploy and manage advertising campaigns, including ad design, placement, and analysis. Ad costs and recruitment metrics (ie, impressions, link clicks, and conversion rates) were calculated across the three social media platforms. Results Over two 1-month periods, 763,613 youth were reached (ie, impressions), 6089 of them clicked survey links (ie, clicks), and 828 eligible youth completed surveys about knowledge, attitudes, and behaviors related to retail marijuana. Instagram converted 36.13% (803/2222) of impressions to clicks (ie, conversion rate) in the first survey and 0.87% (864/98982) in the second survey. Snapchat generated the most impressions and link clicks, but it did so with the lowest conversion rate for both surveys, with a 1.40% (1600/114,200) conversion rate in the first survey and a 0.36% (1818/504700) conversion rate in the second survey. Facebook maintained a consistent conversion rate of roughly 2% across both surveys, despite reductions in budget for the second survey. The cost-per-click ranged between US $0.25 and $0.37 across the three platforms, with Snapchat as both the most cost-effective platform in the first survey and the most expensive platform in the second survey. Conclusions Recruitment and enrollment outcomes indicate the use of Instagram and Snapchat, in addition to Facebook, may be a modern, useful, and cost-effective approach to reach youth with surveys on sensitive health topics. As the use of Facebook declines among youth, the use of more popular social media platforms can augment study recruitment for health research and evaluation efforts.

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Young People’s Use of Digital Health Technologies in the Global North: Narrative Review (Preprint)

10.2196/preprints.18286 ◽

2020 ◽

Author(s):

Deborah Lupton

Keyword(s):

Social Media ◽

Young People ◽

Digital Health ◽

Digital Technologies ◽

Opportunities To Learn ◽

Children And Young People ◽

Health Technologies ◽

Social Media Platforms ◽

Global North ◽

Health Support

BACKGROUND A diverse array of digital technologies are available to children and young people living in the Global North to monitor, manage, and promote their health and well-being. OBJECTIVE This article provides a narrative literature review of the growing number of social research studies published over the past decade that investigate the types of digital technologies used by children and young people in the Global North, in addition to investigating which of these technologies they find most useful or not useful. Key findings as well as major gaps and directions for future research are identified and discussed. METHODS A comprehensive search of relevant publications listed in Google Scholar was conducted, supported by following citation trails of these publications. The findings are listed under type of digital technology used for health: cross-media, internet, social media, apps and wearable devices, sexual health support and information, and mental health support and information. RESULTS Many young people in the Global North are active users of digital health technologies. However, it is notable that they still rely on older technologies, such as websites and search engines, to find information. Apps and platforms that may not have been specifically developed for young people as digital health resources often better suit their needs. Young people appreciate the ready availability of information online, the opportunities to learn more about their bodies and health states, and the opportunities to learn how to improve their health and physical fitness. They enjoy being able to connect with peers, and they find emotional support and relief from distress by using social media platforms, YouTube, and online forums. Young people can find the vast reams of information available to them difficult to navigate. They often look to trusted adults to help them make sense of the information they find online and to provide alternative sources of information and support. Face-to-face interactions with these trusted providers remain important to young people. Risks and harms that young people report from digital health use include becoming overly obsessed with their bodies’ shape and size when using self-tracking technologies and comparing their bodies with the social media influencers they follow. CONCLUSIONS Further details on how young people are using social media platforms and YouTube as health support resources and for peer-to-peer sharing of information, including attention paid to the content of these resources and the role played by young social media influencers and microcelebrities, would contribute important insights to this body of literature. The role played by visual media, such as GIFs (Graphics Interchange Format) and memes, and social media platforms that have recently become very popular with young people (eg, Snapchat and TikTok) in health-related content creation and sharing requires more attention by social researchers seeking to better understand young people’s use of digital devices and software for health and fitness.

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Using social media for health research: Methodological and ethical considerations for recruitment and intervention delivery

Digital Health ◽

10.1177/2055207618771757 ◽

2018 ◽

Vol 4 ◽

pp. 205520761877175 ◽

Cited By ~ 29

Author(s):

Danielle Arigo ◽

Sherry Pagoto ◽

Lisa Carter-Harris ◽

Sarah E Lillie ◽

Camille Nebeker

Keyword(s):

Social Media ◽

Health Research ◽

Ethical Issues ◽

Intervention Development ◽

Responsible Conduct Of Research ◽

Research Recruitment ◽

Intervention Delivery ◽

Participant Engagement ◽

Health Behavior Interventions ◽

Social Media Platforms

As the popularity and diversity of social media platforms increases so does their utility for health research. Using social media for recruitment into clinical studies and/or delivering health behavior interventions may increase reach to a broader audience. However, evidence supporting the efficacy of these approaches is limited, and key questions remain with respect to optimal benchmarks, intervention development and methodology, participant engagement, informed consent, privacy, and data management. Little methodological guidance is available to researchers interested in using social media for health research. In this Tutorial, we summarize the content of the 2017 Society for Behavioral Medicine Pre-Conference Course entitled ‘Using Social Media for Research,’ at which the authors presented their experiences with methodological and ethical issues relating to social media-enabled research recruitment and intervention delivery. We identify common pitfalls and provide recommendations for recruitment and intervention via social media. We also discuss the ethical and responsible conduct of research using social media for each of these purposes.

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Digital Resilience Tactics of Syrian Refugees in the Netherlands: Social Media for Social Support, Health, and Identity

Social Media + Society ◽

10.1177/2056305120915587 ◽

2020 ◽

Vol 6 (2) ◽

pp. 205630512091558 ◽

Cited By ~ 2

Author(s):

Ghadeer Udwan ◽

Koen Leurs ◽

Amanda Alencar

Keyword(s):

Social Support ◽

Social Media ◽

The Netherlands ◽

Identity Management ◽

Digital Health ◽

Host Countries ◽

Social Media Platforms ◽

Health Support ◽

Systemic Violence ◽

The Impact

The process of adjusting to a new country may carry important stressors for refugees. In the light of neoliberal policies, refugees are expected to become resilient in a local arrival infrastructure and perform a specific subjectivity based on gratefulness, adaptability, and digital sensitivity to successfully integrate. Drawing on a qualitative, in-depth case study with Syrians living in the Netherlands, this article explores the impact of the retreat of the welfare state and unfolding digital transitions on resilience tactics of marginalized people like refugees. While recognizing the systemic violence and historic trauma many refugees have experienced, we focus on how refugees are expected to and develop ways to become resilient. Three digital resilience tactics are discussed: digital social support, digital health, and digital identities. Social support was mainly sought from family, friends, organizations, and social media platforms, whereas refugees’ engagement in meaningful digital practices aimed at fostering health promotion and identity management. Our fieldwork resurfaces paradoxes of digital resilience as described by careful emotional digital labor refugees engage in when communicating with families, the role of socio-cultural factors in shaping refugees’ ICT (information and communication technology) adoption and use for health support, and negotiation of different and conflicting identity axes online. Finally, our study provides some insights into the implementation of more effective online and offline practices in the context of social and health support by host countries.

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