Background As social media are increasingly used worldwide, more and more scientists are relying on them for their health-related projects. However, social media features, methodologies, and ethical issues are unclear so far because, to our knowledge, there has been 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 application, 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 (eg, social media, health research), comprehensive searches were conducted in the PubMed/MEDLINE and Web of Science databases. We limited the search strategies to documents written in English and published between January 1, 2005, and April 9, 2020. After removing duplicates, articles were screened at the title and abstract level and at the full text level by two independent reviewers. One reviewer extracted data, which 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 the Americas (173/268, 64.6%, including 151 from the United States). Articles used machine learning or data mining techniques (60/268) to analyze the data, discussed opportunities and limitations of the use of social media for research (59/268), assessed the feasibility of recruitment strategies (45/268), or discussed ethical issues (16/268). Communicable (eg, influenza, 40/268) and then chronic (eg, cancer, 24/268) diseases were the two main areas of interest. Conclusions Since their early days, social media have been recognized as resources with high potential for health research purposes, yet the field is still suffering from strong heterogeneity in the methodologies used, which prevents the research from being compared and generalized. 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. International Registered Report Identifier (IRRID) RR2-10.1136/bmjopen-2020-040671
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.
IntroductionMore than one-third of the world population uses at least one form of social media. Since their advent in 2005, health-oriented research based on social media data has largely increased as discussions about health issues are broadly shared online and generate a large amount of health-related data. The objective of this scoping review is to provide an evidence map of the various uses of social media for health research purposes, their fields of applications and their analysis methods.Methods and analysisThis scoping review will follow the Arksey and O’Malley methodological framework (2005) as well as the Joanna Briggs Institute Reviewer’s manual. Relevant publications will be first searched on the PudMed/MEDLINE database and then on Web of Science. We will focus on literature published between January 2005 and April 2020. All articles related to the use of social media or networks for health-oriented research purposes will be included. A first search will be conducted with some keywords in order to identify relevant articles. After identifying the research strategy, a two-part study selection process will be systematically applied by two reviewers. The first part consists of screening titles and abstracts found, thanks to the search strategy, to define the eligibility of each article. In the second part, the full texts will be screened and only relevant articles will be kept. Data will finally be extracted, collated and charted to summarise all the relevant methods, outcomes and key findings in the articles.Ethics and disseminationThis scoping review will provide an extensive overview of the use of social media for health research purposes. Opportunities as well as future ethical, methodological and technical challenges will also be discussed based on our findings to define a new research agenda. Results will be disseminated through a peer-reviewed publication.
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