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

2018 ◽  
Vol 4 ◽  
pp. 205520761877175 ◽  
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.

scholarly journals Social Media, Research, and Ethics: Does Participant Willingness Matter?

2020 ◽  
Vol 29 (01) ◽  
pp. 176-183
Author(s):  
Annie Y. S. Lau ◽  
Pascal Staccini ◽  
Keyword(s):  
Social Media ◽  
Clinical Research ◽  
Social Networking Sites ◽  
Health Informatics ◽  
Ethical Issues ◽  
Online Data ◽  
Ethical Concerns ◽  
Participant Engagement ◽  
Social Media Platforms ◽  
The Impact

Objective: To summarise the state of the art published in 2019 in consumer health informatics and education, with a special emphasis on “Ethics and Health Informatics”. Methods: We conducted a systematic search of articles published in PubMed using a predefined set of queries, which identified 368 potential articles for review. These articles were screened according to topic relevance and 15 were selected for consideration of best paper candidates, which were then presented to a panel of international experts for full paper review and scoring. The top five papers according to the external reviewers’ ranking were discussed in a consensus meeting. Finally, the paper that received the highest score from four of the five experts was selected as the best paper on social media and ethics for patients and consumers of the year 2019. Results: Despite using the terms “ethics” and “ethical” in the search query, we retrieved very few articles. The bibliometric analysis identified three major clusters centred on “social”, “health”, and “study”. Among the top five papers, one was a review where the authors identified ethical issues across four areas at the intersection of social media and health: 1) the impact of social networking sites on the doctor-patient relationship; 2) the development of e-health platforms to deliver care; 3) the use of online data and algorithms to inform health research; and 4) the broader public health consequences of widespread social media use. The other papers highlighted ethical concerns in using social media to interact with patients at different phases of a clinical research protocol, such as recruitment phase, participant engagement, data linkage, and detection and monitoring of adverse events. Conclusions: Findings suggest that most users do not think that using social media for patient monitoring in clinical research, for example using Twitter for clinical trial recruitment, constitutes inappropriate surveillance or a violation of privacy. However, further research is needed to identify whether and how views on ethical concerns differed between social media platforms and across populations.

scholarly journals Principles for the production and dissemination of recruitment material for three clinical trials of an online intervention

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Stefan Rennick-Egglestone
Keyword(s):  
Social Media ◽  
Clinical Trials ◽  
Health Research ◽  
Online Intervention ◽  
Ethics Committee ◽  
Promotional Material ◽  
Media Campaigns ◽  
Social Media Platforms ◽  
Ethical Oversight ◽  
Research Studies

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.

scholarly journals The Use Of Social Media For Health Research Purposes: Scoping Review (Preprint)

2020 ◽  
Author(s):  
Charline Bour ◽  
Susanne Schmitz ◽  
Adrian Ahne ◽  
Camille Perchoux ◽  
Coralie Dessenne ◽  
...  
Keyword(s):  
Social Media ◽  
Scoping Review ◽  
Health Research ◽  
Ethical Issues ◽  
Search Strategies ◽  
Annual Growth Rate ◽  
Ethical Perspective ◽  
Evidence Map ◽  
The Usa ◽  
Use Of Social Media

BACKGROUND As social media are increasingly used worldwide, more and more scientists are relying on them for their health-related projects. But so far, social media features, methodologies and ethical issues are unclear with no overview of this relatively young field of research. OBJECTIVE This scoping review aimed to provide an evidence map of the different uses of social media for health research purposes, their fields of applications and their analysis methods. METHODS We followed the scoping review methodologies developed by Arksey and O’Malley and the Joanna Briggs Institute. After developing search strategies based on keywords (e.g., Social media, health research), comprehensive searches were conducted in Pubmed/MEDLINE and Web of Science databases. We limited the search strategies to documents written in English and published between 2005/01/01 and 2020/04/09. After removing duplicates, articles were screened at title/abstract and at full text level by two independent reviewers. One reviewer extracted data that were descriptively analyzed to map the available evidence. RESULTS After screening 1237 titles and abstracts and 407 full-texts, 268 unique papers were included, dating from 2009 to 2020 with an average annual growth rate of 32.71% for the 2009-2019 period. Studies mainly came from America (64.55%, N=173/268, including 151 from the USA). Articles used machine learning or data mining techniques (N=60/268) to analyze the data, discussed opportunities and limitations of the use of social media for research (N=59/268), assessed the feasibility of recruitment strategies (N=45/268) or discussed ethical issues (N=16/268). Communicable (e.g., influenza, N=122/268) and then chronic (e.g., cancer, N=40/268) diseases were the two main areas of interest. CONCLUSIONS Since their early days, social media have been recognized as a resource of high potential for health research purposes but yet the field is still suffering from a strong heterogeneity in the methodologies used, which prevents the research from comparison and generalisability. For the field to be fully recognized as a valid, complementary approach to more traditional health research study designs, there is now a need for more guidance by types of applications of social media for health research, both from a methodological and an ethical perspective.

scholarly journals The public accountability of social platforms: lessons from a study on bots and trolls in the Brexit campaign

2018 ◽  
Vol 376 (2128) ◽  
pp. 20180003 ◽  
Author(s):  
Marco Bastos ◽  
Dan Mercea
Keyword(s):  
Social Media ◽  
Large Scale ◽  
Ethical Issues ◽  
Lessons Learned ◽  
Information Warfare ◽  
The Public ◽  
Social Media Platforms ◽  
Application Programming ◽  
Access To Data ◽  
The Uk

In this article, we review our study of 13 493 bot-like Twitter accounts that tweeted during the UK European Union membership referendum debate and disappeared from the platform after the ballot. We discuss the methodological challenges and lessons learned from a study that emerged in a period of increasing weaponization of social media and mounting concerns about information warfare. We address the challenges and shortcomings involved in bot detection, the extent to which disinformation campaigns on social media are effective, valid metrics for user exposure, activation and engagement in the context of disinformation campaigns, unsupervised and supervised posting protocols, along with infrastructure and ethical issues associated with social sciences research based on large-scale social media data. We argue for improving researchers' access to data associated with contentious issues and suggest that social media platforms should offer public application programming interfaces to allow researchers access to content generated on their networks. We conclude with reflections on the relevance of this research agenda to public policy. This article is part of a discussion meeting issue ‘The growing ubiquity of algorithms in society: implications, impacts and innovations'.

Social Media and Pediatric Research Recruitment

2018 ◽  
pp. 227-243
Author(s):  
Luke Gelinas ◽  
Jennifer C. Kesselheim
Keyword(s):  
Social Media ◽  
Clinical Practice ◽  
Clinical Research ◽  
Ethical Issues ◽  
Media Use ◽  
Pediatric Research ◽  
Research Recruitment ◽  
Pediatric Populations ◽  
Potential Risks ◽  
Use Of Social Media

Social media use has increased exponentially across all demographics. With social media’s widespread popularity comes an increased potential for research sponsors and investigators to use it as an effective tool for recruiting individuals into clinical research. Despite this, there has been relatively little attention paid to the general ethical issues implicated in social media recruitment and even less attention paid to the distinct ethical issues raised by using social media to recruit pediatric populations more specifically. This chapter examines these issues, providing an overview of the use of social media in clinical practice, an assessment of the general ethical issues associated with social media recruitment, and analysis of the potential risks and benefits of using social media to target adolescents for recruitment into clinical research.

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

2020 ◽  
Vol 6 ◽  
pp. 205520761990108 ◽  
Author(s):  
Camille Nebeker ◽  
Sarah E. Dunseath ◽  
Rubi Linares-Orozco
Keyword(s):  
Social Media ◽  
Retrospective Analysis ◽  
Health Research ◽  
Digital Health ◽  
Social Media Platforms

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

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.

The Impact of Social Media on Knowledge Culture

2021 ◽  
pp. 112-124
Author(s):  
Samantha Engel ◽  
Linda Lee-Davies
Keyword(s):  
Social Media ◽  
Cultural Change ◽  
Ethical Issues ◽  
Cultural Practice ◽  
Modern Culture ◽  
Knowledge Culture ◽  
Social Media Platforms ◽  
Filter Bubbles ◽  
Media Applications ◽  
The Impact

Culture is not static and technological innovations have greatly changed culture throughout history, no more so than in recent years. Modern culture is very much influenced and defined by recent technology and media use, primarily through social media applications such as Facebook, Instagram, LinkedIn, Snapchat and Twitter. Although use and impact vary around the world, globalization brings this cultural change into wider and faster channels. Social media has transformed the way people interact and learn in local, national and international terms as well as evolving new social practices. Echo chambers, filter bubbles, and fake news dominate the internet and people's lives, determining and even limiting the content of learning that people are exposed to on social media platforms. This, in itself, channels cultural practice into homogenized tranches creating a cyclical influence which feeds back into evolving technology. This article sets out to discuss the current cultural impact of social media, its limitation on learning and surface the ethical issues surrounding its use.

scholarly journals Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations

2017 ◽  
Vol 17 (3) ◽  
pp. 3-14 ◽  
Author(s):  
Luke Gelinas ◽  
Robin Pierce ◽  
Sabune Winkler ◽  
I. Glenn Cohen ◽  
Holly Fernandez Lynch ◽  
...  
Keyword(s):  
Social Media ◽  
Ethical Issues ◽  
Research Recruitment ◽  
Recruitment Tool
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