scholarly journals Comprehensive scoping review of health research using social media data

BMJ Open ◽  
2018 ◽  
Vol 8 (12) ◽  
pp. e022931 ◽  
Author(s):  
Joanna Taylor ◽  
Claudia Pagliari
Keyword(s):  
Public Health ◽  
Social Media ◽  
Scoping Review ◽  
Ethical Issues ◽  
Social Media Data ◽  
Related Research ◽  
Health Related Research ◽  
Health Related ◽  
Google Search ◽  
Media Data

IntroductionThe rising popularity of social media, since their inception around 20 years ago, has been echoed in the growth of health-related research using data derived from them. This has created a demand for literature reviews to synthesise this emerging evidence base and inform future activities. Existing reviews tend to be narrow in scope, with limited consideration of the different types of data, analytical methods and ethical issues involved. There has also been a tendency for research to be siloed within different academic communities (eg, computer science, public health), hindering knowledge translation. To address these limitations, we will undertake a comprehensive scoping review, to systematically capture the broad corpus of published, health-related research based on social media data. Here, we present the review protocol and the pilot analyses used to inform it.MethodsA version of Arksey and O’Malley’s five-stage scoping review framework will be followed: (1) identifying the research question; (2) identifying the relevant literature; (3) selecting the studies; (4) charting the data and (5) collating, summarising and reporting the results. To inform the search strategy, we developed an inclusive list of keyword combinations related to social media, health and relevant methodologies. The frequency and variability of terms were charted over time and cross referenced with significant events, such as the advent of Twitter. Five leading health, informatics, business and cross-disciplinary databases will be searched: PubMed, Scopus, Association of Computer Machinery, Institute of Electrical and Electronics Engineers and Applied Social Sciences Index and Abstracts, alongside the Google search engine. There will be no restriction by date.Ethics and disseminationThe review focuses on published research in the public domain therefore no ethics approval is required. The completed review will be submitted for publication to a peer-reviewed, interdisciplinary open access journal, and conferences on public health and digital research.

scholarly journals From FAIR data to fair data use: Methodological data fairness in health-related social media research

2021 ◽  
Vol 8 (1) ◽  
pp. 205395172110103
Author(s):  
Sabina Leonelli ◽  
Rebecca Lovell ◽  
Benedict W Wheeler ◽  
Lora Fleming ◽  
Hywel Williams
Keyword(s):  
Social Media ◽  
Well Being ◽  
Research Process ◽  
Future Research ◽  
Social Media Data ◽  
Data Practices ◽  
Health Related Research ◽  
Health Related ◽  
Use Of Social Media ◽  
Media Data

The paper problematises the reliability and ethics of using social media data, such as sourced from Twitter or Instagram, to carry out health-related research. As in many other domains, the opportunity to mine social media for information has been hailed as transformative for research on well-being and disease. Considerations around the fairness, responsibilities and accountabilities relating to using such data have often been set aside, on the understanding that as long as data were anonymised, no real ethical or scientific issue would arise. We first counter this perception by emphasising that the use of social media data in health research can yield problematic and unethical results. We then provide a conceptualisation of methodological data fairness that can complement data management principles such as FAIR by enhancing the actionability of social media data for future research. We highlight the forms that methodological data fairness can take at different stages of the research process and identify practical steps through which researchers can ensure that their practices and outcomes are scientifically sound as well as fair to society at large. We conclude that making research data fair as well as FAIR is inextricably linked to concerns around the adequacy of data practices. The failure to act on those concerns raises serious ethical, methodological and epistemic issues with the knowledge and evidence that are being produced.

scholarly journals Mining Social Media Data for Biomedical Signals and Health-Related Behavior

2020 ◽  
Vol 3 (1) ◽  
pp. 433-458 ◽  
Author(s):  
Rion Brattig Correia ◽  
Ian B. Wood ◽  
Johan Bollen ◽  
Luis M. Rocha
Keyword(s):  
Mental Health ◽  
Social Media ◽  
Population Level ◽  
Data Access ◽  
Health Conditions ◽  
Social Phenomena ◽  
Medical Treatments ◽  
Social Media Data ◽  
Health Related ◽  
Media Data

Social media data have been increasingly used to study biomedical and health-related phenomena. From cohort-level discussions of a condition to population-level analyses of sentiment, social media have provided scientists with unprecedented amounts of data to study human behavior associated with a variety of health conditions and medical treatments. Here we review recent work in mining social media for biomedical, epidemiological, and social phenomena information relevant to the multilevel complexity of human health. We pay particular attention to topics where social media data analysis has shown the most progress, including pharmacovigilance and sentiment analysis, especially for mental health. We also discuss a variety of innovative uses of social media data for health-related applications as well as important limitations of social media data access and use.

Determining factors of participants' attitudes toward the ethics of social media data research

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Yi Chen ◽  
Chuanfu Chen ◽  
Si Li
Keyword(s):  
Social Media ◽  
Structural Equation ◽  
Ethical Issues ◽  
Equation Modeling ◽  
Research Subjects ◽  
Social Media Data ◽  
Content Type ◽  
Mediating Role ◽  
Determining Factors ◽  
Media Data

PurposeThe purpose of this study was to investigate the participants' attitudes toward the ethical issues caused by collecting social media data (SMD) for research, as well as the effects of familiarity, trust and altruism on the participants' attitudes toward the ethics of SMD research. It is hoped that through this study, scholars will be reminded to respect participants and engage in ethical reflection when using SMD in research.Design/methodology/approachThis study adopted social media users as its research subjects and used Sina Microblog, the world's largest Chinese social media platform, as the example. Based on the 320 valid responses collected from a survey, structural equation modeling was employed to examine the research model.FindingsThe results indicated that altruism, familiarity and trust have significant influences on participants' attitudes toward the ethics of SMD research, and familiarity also influences attitudes through the mediating role of trust and altruism.Originality/valueThis study explored the mechanism underlying the relationship between the determining factors and participants' attitudes toward the ethics of SMD research, and the results demonstrated that the informed consent mechanism is an effective way to communicate with participants and that the guiding responsibility of the platform should be improved to standardize SMD research.

scholarly journals Insulin pricing and other major diabetes-related concerns in the USA: a study of 46 407 tweets between 2017 and 2019

2020 ◽  
Vol 8 (1) ◽  
pp. e001190
Author(s):  
Adrian Ahne ◽  
Francisco Orchard ◽  
Xavier Tannier ◽  
Camille Perchoux ◽  
Beverley Balkau ◽  
...  
Keyword(s):  
Social Media ◽  
Positive Emotions ◽  
Negative Impact ◽  
Diabetes Distress ◽  
Social Media Data ◽  
Health Related ◽  
The Usa ◽  
Personal Content ◽  
Design And Methods ◽  
Media Data

IntroductionLittle research has been done to systematically evaluate concerns of people living with diabetes through social media, which has been a powerful tool for social change and to better understand perceptions around health-related issues. This study aims to identify key diabetes-related concerns in the USA and primary emotions associated with those concerns using information shared on Twitter.Research design and methodsA total of 11.7 million diabetes-related tweets in English were collected between April 2017 and July 2019. Machine learning methods were used to filter tweets with personal content, to geolocate (to the USA) and to identify clusters of tweets with emotional elements. A sentiment analysis was then applied to each cluster.ResultsWe identified 46 407 tweets with emotional elements in the USA from which 30 clusters were identified; 5 clusters (18% of tweets) were related to insulin pricing with both positive emotions (joy, love) referring to advocacy for affordable insulin and sadness emotions related to the frustration of insulin prices, 5 clusters (12% of tweets) to solidarity and support with a majority of joy and love emotions expressed. The most negative topics (10% of tweets) were related to diabetes distress (24% sadness, 27% anger, 21% fear elements), to diabetic and insulin shock (45% anger, 46% fear) and comorbidities (40% sadness).ConclusionsUsing social media data, we have been able to describe key diabetes-related concerns and their associated emotions. More specifically, we were able to highlight the real-world concerns of insulin pricing and its negative impact on mood. Using such data can be a useful addition to current measures that inform public decision making around topics of concern and burden among people with diabetes.

scholarly journals Corrigendum

2018 ◽  
Vol 45 (1) ◽  
pp. 136-136
Keyword(s):  
Public Health ◽  
Social Media ◽  
Information Science ◽  
Patient Data ◽  
Online Version ◽  
Social Media Data ◽  
Medical Network ◽  
The Social ◽  
Media Data ◽  
Prior Permission

Ji X, Chun SA, Cappellari P, et al. Linking and using social media data for enhancing public health analytics. Journal of Information Science 2016; 43: 221–245. DOI: 10.1177/0165551515625029 The authors regret that non-anonymised patient data was used from a social medical network without prior permission. With permission from the social medical network, the authors have anonymised the data and corrected the article. The online version of the article has been corrected.

Methods to assess research misconduct in health-related research: A scoping review

2021 ◽  
Author(s):  
Esmee M Bordewijk ◽  
Wentao Li ◽  
Rik van Eekelen ◽  
Rui Wang ◽  
Marian Showell ◽  
...  
Keyword(s):  
Scoping Review ◽  
Research Misconduct ◽  
Related Research ◽  
Health Related Research ◽  
Health Related

scholarly journals Underage JUUL Use Patterns: Content Analysis of Reddit Messages

10.2196/13038 ◽  
2019 ◽  
Vol 21 (9) ◽  
pp. e13038 ◽  
Author(s):  
Yongcheng Zhan ◽  
Zhu Zhang ◽  
Janet M Okamoto ◽  
Daniel D Zeng ◽  
Scott J Leischow
Keyword(s):  
Public Health ◽  
Social Media ◽  
News Media ◽  
Age Distribution ◽  
Social Media Data ◽  
Related Data ◽  
Use Patterns ◽  
Cigarette Brand ◽  
Media Data ◽  
Significant Health

Background The popularity of JUUL (an e-cigarette brand) among youth has recently been reported in news media and academic papers, which has raised great public health concerns. Little research has been conducted on the age distribution, geographic distribution, approaches to buying JUUL, and flavor preferences pertaining to underage JUUL users. Objective The aim of this study was to analyze social media data related to demographics, methods of access, product characteristics, and use patterns of underage JUUL use. Methods We collected publicly available JUUL-related data from Reddit. We extracted and summarized the age, location, and flavor preference of subreddit UnderageJuul users. We also compared common and unique users between subreddit UnderageJuul and subreddit JUUL. The methods of purchasing JUULs were analyzed by manually examining the content of the Reddit threads. Results A total of 716 threads and 2935 comments were collected from the subreddit UnderageJuul before it was shut down. Most threads did not mention a specific age, but ages ranged from 13 years to greater than 21 years in those that did. Mango, mint, and cucumber were the most popular among the 7 flavors listed on JUUL’s official website, and 336 subreddit UnderageJuul threads mentioned 7 discreet approaches to circumvent relevant legal regulations to get JUUL products, the most common of which was purchasing JUUL from other Reddit users (n=181). Almost half of the UnderageJuul users (389/844, 46.1%) also participated in discussions on the main JUUL subreddit and sought information across multiple Reddit forums. Most (64/74, 86%) posters were from large metropolitan areas. Conclusions The subreddit UnderageJuul functioned as a forum to explore methods of obtaining JUUL and to discuss and recommend specific flavors before it was shut down. About half of those using UnderageJuul also used the more general JUUL subreddit, so a forum still exists where youths can attempt to share information on how to obtain JUUL and other products. Exploration of such social media data in real time for rapid public health surveillance could provide early warning for significant health risks before they become major public health threats.

scholarly journals Suicide Risk and Protective Factors in Online Support Forum Posts: Annotation Scheme Development and Validation Study (Preprint)

2020 ◽  
Author(s):  
Stevie Chancellor ◽  
Steven A Sumner ◽  
Corinne David-Ferdon ◽  
Tahirah Ahmad ◽  
Munmun De Choudhury
Keyword(s):  
Public Health ◽  
Machine Learning ◽  
Social Media ◽  
Protective Factors ◽  
Suicide Risk ◽  
Risk And Protective Factors ◽  
Prior Work ◽  
Annotation Scheme ◽  
Social Media Data ◽  
Media Data

BACKGROUND Online communities provide support for individuals looking for help with suicidal ideation and crisis. As community data are increasingly used to devise machine learning models to infer who might be at risk, there have been limited efforts to identify both risk and protective factors in web-based posts. These annotations can enrich and augment computational assessment approaches to identify appropriate intervention points, which are useful to public health professionals and suicide prevention researchers. OBJECTIVE This qualitative study aims to develop a valid and reliable annotation scheme for evaluating risk and protective factors for suicidal ideation in posts in suicide crisis forums. METHODS We designed a valid, reliable, and clinically grounded process for identifying risk and protective markers in social media data. This scheme draws on prior work on construct validity and the social sciences of measurement. We then applied the scheme to annotate 200 posts from r/SuicideWatch—a Reddit community focused on suicide crisis. RESULTS We documented our results on producing an annotation scheme that is consistent with leading public health information coding schemes for suicide and advances attention to protective factors. Our study showed high internal validity, and we have presented results that indicate that our approach is consistent with findings from prior work. CONCLUSIONS Our work formalizes a framework that incorporates construct validity into the development of annotation schemes for suicide risk on social media. This study furthers the understanding of risk and protective factors expressed in social media data. This may help public health programming to prevent suicide and computational social science research and investigations that rely on the quality of labels for downstream machine learning tasks.

scholarly journals Suicide Risk and Protective Factors in Online Support Forum Posts: Annotation Scheme Development and Validation Study

10.2196/24471 ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. e24471
Author(s):  
Stevie Chancellor ◽  
Steven A Sumner ◽  
Corinne David-Ferdon ◽  
Tahirah Ahmad ◽  
Munmun De Choudhury
Keyword(s):  
Public Health ◽  
Machine Learning ◽  
Social Media ◽  
Protective Factors ◽  
Suicide Risk ◽  
Risk And Protective Factors ◽  
Prior Work ◽  
Annotation Scheme ◽  
Social Media Data ◽  
Media Data

Background Online communities provide support for individuals looking for help with suicidal ideation and crisis. As community data are increasingly used to devise machine learning models to infer who might be at risk, there have been limited efforts to identify both risk and protective factors in web-based posts. These annotations can enrich and augment computational assessment approaches to identify appropriate intervention points, which are useful to public health professionals and suicide prevention researchers. Objective This qualitative study aims to develop a valid and reliable annotation scheme for evaluating risk and protective factors for suicidal ideation in posts in suicide crisis forums. Methods We designed a valid, reliable, and clinically grounded process for identifying risk and protective markers in social media data. This scheme draws on prior work on construct validity and the social sciences of measurement. We then applied the scheme to annotate 200 posts from r/SuicideWatch—a Reddit community focused on suicide crisis. Results We documented our results on producing an annotation scheme that is consistent with leading public health information coding schemes for suicide and advances attention to protective factors. Our study showed high internal validity, and we have presented results that indicate that our approach is consistent with findings from prior work. Conclusions Our work formalizes a framework that incorporates construct validity into the development of annotation schemes for suicide risk on social media. This study furthers the understanding of risk and protective factors expressed in social media data. This may help public health programming to prevent suicide and computational social science research and investigations that rely on the quality of labels for downstream machine learning tasks.

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