Ethics in Health Research Using Social Media

2019 ◽  
pp. 259-269
Author(s):  
Rupa Valdez ◽  
Jessica Keim-Malpass
Keyword(s):  
Social Media ◽  
Health Research

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 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

Harnessing Social Media for Child Health Research

2016 ◽  
Vol 170 (1) ◽  
pp. 5 ◽  
Author(s):  
Kurt R. Schumacher ◽  
Joyce M. Lee
Keyword(s):  
Social Media ◽  
Child Health ◽  
Health Research ◽  
Child Health Research

scholarly journals Mining social media data: How are research sponsors and researchers addressing the ethical challenges?

2017 ◽  
Vol 14 (2) ◽  
pp. 1-39 ◽  
Author(s):  
Joanna Taylor ◽  
Claudia Pagliari
Keyword(s):  
Social Media ◽  
Health Research ◽  
Social Research ◽  
International Association ◽  
Academic Community ◽  
Ethical Challenges ◽  
Ethical Considerations ◽  
Social Media Data ◽  
Ethics Guidelines ◽  
Media Data

Background: Data representing people’s behaviour, attitudes, feelings and relationships are increasingly being harvested from social media platforms and re-used for research purposes. This can be ethically problematic, even where such data exist in the public domain. We set out to explore how the academic community is addressing these challenges by analysing a national corpus of research ethics guidelines and published studies in one interdisciplinary research area. Methods: Ethics guidelines published by Research Councils UK (RCUK), its seven-member councils and guidelines cited within these were reviewed. Guidelines referring to social media were classified according to published typologies of social media research uses and ethical considerations for social media mining. Using health research as an exemplar, PubMed was searched to identify studies using social media data, which were assessed according to their coverage of ethical considerations and guidelines. Results: Of the 13 guidelines published or recommended by RCUK, only those from the Economic and Social Research Council, the British Psychological Society, the International Association of Internet Researchers and the National Institute for Health Research explicitly mentioned the use of social media. Regarding data re-use, all four mentioned privacy issues but varied with respect to other ethical considerations. The PubMed search revealed 156 health-related studies involving social media data, only 50 of which mentioned ethical concepts, in most cases simply stating that they had obtained ethical approval or that no consent was required. Of the nine studies originating from UK institutions, only two referred to RCUK ethics guidelines or guidelines cited within these. Conclusions: Our findings point to a deficit in ethical guidance for research involving data extracted from social media. Given the growth of studies using these new forms of data, there is a pressing need to raise awareness of their ethical challenges and provide actionable recommendations for ethical research practice.

scholarly journals When Public Health Research Meets Social Media: Knowledge Mapping From 2000 to 2018 (Preprint)

2019 ◽  
Author(s):  
Yan Zhang ◽  
Bolin Cao ◽  
Yifan Wang ◽  
Tai-Quan Peng ◽  
Xiaohua Wang
Keyword(s):  
Public Health ◽  
Social Media ◽  
Research Methods ◽  
Health Research ◽  
Quantitative Methods ◽  
Public Health Research ◽  
Research Interest ◽  
Research Context ◽  
Research Themes

BACKGROUND Social media has substantially changed how people confront health issues. However, a comprehensive understanding of how social media has altered the foci and methods in public health research remains lacking. OBJECTIVE This study aims to examine research themes, the role of social media, and research methods in social media–based public health research published from 2000 to 2018. METHODS A dataset of 3419 valid studies was developed by searching a list of relevant keywords in the Web of Science and PubMed databases. In addition, this study employs an unsupervised text-mining technique and topic modeling to extract research themes of the published studies. Moreover, the role of social media and research methods adopted in those studies were analyzed. RESULTS This study identifies 25 research themes, covering different diseases, various population groups, physical and mental health, and other significant issues. Social media assumes two major roles in public health research: produce substantial research interest for public health research and furnish a research context for public health research. Social media provides substantial research interest for public health research when used for health intervention, human-computer interaction, as a platform of social influence, and for disease surveillance, risk assessment, or prevention. Social media acts as a research context for public health research when it is mere reference, used as a platform to recruit participants, and as a platform for data collection. While both qualitative and quantitative methods are frequently used in this emerging area, cutting edge computational methods play a marginal role. CONCLUSIONS Social media enables scholars to study new phenomena and propose new research questions in public health research. Meanwhile, the methodological potential of social media in public health research needs to be further explored.

scholarly journals What a Bibliometric Study Tells us about Social Media Mental Health Research (Preprint)

2021 ◽  
Author(s):  
Philip Resnik ◽  
Munmun De Choudhury ◽  
Katherine Musacchio Schafer ◽  
Glen Coppersmith
Keyword(s):  
Mental Health ◽  
Social Media ◽  
Health Research ◽  
Mental Health Research ◽  
Bibliometric Study

UNSTRUCTURED No abstract/not applicable

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.

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