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The Patient Safety Enhancement Program, Hospital Outcomes Program of Excellence, and the Center for Clinical Management Research, University of Michigan Health System, Ann Arbor VA Medical Center, Ann Arbor
The purpose of this study is to evaluate clinical outcomes from applications of contemporary social media in chronic disease; to develop a conceptual taxonomy to categorize, summarize, and then analyze the current evidence base; and to suggest a framework for future studies on this topic.
Methods
We performed a systematic review of MEDLINE via PubMed (January 2000 to January 2015) of studies reporting clinical outcomes on leading contemporary social media (ie, Facebook, Twitter, Wikipedia, YouTube) use in 10 chronic diseases. Two reviewers independently performed data extraction and quality assessment; characterization of study outcomes as positive, negative, neutral, or undefined impact; and inductive, thematic analysis to develop our taxonomy.
Results
Of 378 citations identified, 42 studies examining the use of Facebook (n = 16), blogs (n = 13), Twitter (n = 8), wikis (n = 5), and YouTube (n = 4) on outcomes in cancer (n = 14), depression (n = 13), obesity (n = 9), diabetes (n = 4), heart disease (n = 3), stroke (n = 2), and chronic lower respiratory tract infection (n = 1) were included. Studies were classified as support (n = 16), patient education (n = 10), disease modification (n = 6), disease management (n = 5), and diagnosis (n = 5) within our taxonomy. The overall impact of social media on chronic disease was variable, with 48% of studies indicating benefit, 45% neutral or undefined, and 7% suggesting harm. Among studies that showed benefit, 85% used either Facebook or blogs, and 40% were based within the domain of support.
Conclusions
Using social media to provide social, emotional, or experiential support in chronic disease, especially with Facebook and blogs, appears most likely to improve patient care.
Use of contemporary social media technology in chronic disease care can be categorized as: support, education, disease modification, disease diagnosis, or disease management.
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Based on the current literature, contemporary social media is most likely to improve chronic disease care when used to provide social, emotional, or experiential support.
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Few studies suggest any harm from the use of contemporary social media technology in chronic disease care.
With well over 70% of all Internet users using some form of this technology, social media has become ubiquitous in America.
Consequently, social media has become increasingly prominent in health and health care; in a recent survey, 23% of social media users reported following a friend's personal health updates, 15% sought health information on the Web, 11% posted about health-related matters, and 9% joined health-related groups.
These novel avenues of information acquisition and exchange have important implications for health and disease management. Rapid diffusion, low cost, and broad availability of social media make it an attractive platform for managing care, communication, and interventions in chronic disease. Yet, objective data to guide clinicians on how best to exchange information, measure progress, and intervene using social media is lacking. Existing narrative reviews on this topic highlight the complexity of evaluating this area of literature.
In addition, many such articles primarily have reviewed the predecessors of contemporary social media such as forums, bulletin/message boards, and chatrooms.
To address these gaps, we performed a systematic review of the literature and developed a taxonomy of contemporary social media use in highly morbid, common chronic diseases. Next, we assessed the impact of social media by taxonomy category. In doing so, we sought to develop a conceptual schema that would offer clinical insights into how best to use social media, while also creating a blueprint for future studies on this topic.
Methods
We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations when performing this systematic review.
We selected chronic diseases listed on the Centers for Disease Control Leading Causes of Death list including heart disease (eg, hypertension, heart failure, coronary artery disease, valvular disease, and cardiac arrhythmias); cancer; chronic lower respiratory tract infection (CLRTI); stroke; Alzheimer's disease; and diabetes mellitus (see Appendix, online).
Depression was included as it is an antecedent condition to intentional self-harm (suicide); while obesity was included due to its established pathophysiologic association with many of the aforementioned diseases.
With the assistance of a medical research librarian, we performed serial electronic literature searches of MEDLINE via PubMed for English-language studies published between January 2000 and January 2015. Search strings were constructed using Boolean operators, combining comprehensive terms for contemporary social media with terms for the diseases of interest (Appendix). Controlled vocabularies (ie, MeSH terms) and manual searches using relevant Cochrane reviews identified synonyms for all diseases of interest.
Additional studies also were identified by hand searches of bibliographies. No journal, study design, or subject filters were placed on the search; however, conference proceedings and abstracts were excluded. The search was last updated on January 3, 2015.
Study Selection
Two authors (RP and TC) independently assessed study eligibility; any difference of opinion was adjudicated by a third author (VC). Studies were included if they: involved adults >18 years of age; represented primary investigations of contemporary social media technology; and reported outcomes regarding the effect of social media use in a chronic disease of interest. We excluded studies that: were not original research (eg, discussions, editorials); did not study the chronic diseases of interest; did not report clinical outcomes (eg, educational, research, or public policy); or described patterns of social media use rather than impact on a chronic disease state.
Data Extraction and Quality Assessment
Three authors (RP, TC, and VC) independently abstracted data from all included studies to a template adapted from the Cochrane Collaboration.
For all studies, we extracted the following variables: study design, objectives, geographic location, setting, inclusion criteria, method of participant selection, sample size, participant age, study procedure, social media technology, chronic disease, primary outcomes, and secondary outcomes. In addition, for each study, reviewers independently assessed and categorized the impact of social media on the chronic disease of interest. We categorized studies as positive impact if social media use or content was reported by the authors as being beneficial in the chronic disease of interest; conversely, outcomes that suggested social media use was harmful were categorized as negative impact. Impact was classified as undefined if a study reported both positive and negative outcomes, or the overall benefits or harm of social media were unclear. The term “neutral” was used for studies when no change or difference in outcomes was reported. Abstraction accuracy and agreement regarding impact of social media on the chronic disease state was evaluated in triplicate (RP, TC, and VC). Inter-rater agreement of abstraction accuracy and impact of social media on disease states were assessed using Cohen's κ statistic. Study authors were contacted for additional data when needed.
Two authors (RP, VC) independently assessed study quality. Included studies were divided into quantitative or qualitative studies. We appraised risk of bias in quantitative studies using the Downs and Black tool as recommended by the Cochrane Collaboration.
The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions.
The Downs and Black tool allows calculation of an overall score (max points = 28) for methodological quality in randomized and nonrandomized studies by asking 27 questions in 4 categories (reporting points = 11, external validity points = 3, internal validity – bias points = 7, and internal validity – confounding points = 6). Questions that we were unable to answer or did not apply received 0 points. Risk of bias for qualitative studies was determined by the Critical Appraisal Skills Program (CASP) tool, also recommended by the Cochrane Collaboration.
Chapter 4: Critical appraisal of qualitative research.
in: Noyes J. Booth A. Hannes K. Supplementary Guidance for Inclusion of Qualitative Research in Cochrane Systematic Reviews of Interventions. Version 1. Cochrane Collaboration Qualitative Methods Group,
London2011
CASP asks 10 simple (“yes,” “no,” or “can't tell”) questions about study goals, methodology, bias, ethics, data analysis, and result reporting. We scored each study on a 10-point scale, considering studies with 1-4 points low quality, 4-7 points moderate quality, and 7-10 points as high quality. If a study contained quantitative and qualitative approaches, it was categorized as a mixed-methods study and was evaluated using both tools.
Data Synthesis and Analysis
Definition of Terms and Outcomes
Social media encompasses a swath of technology that extends beyond specific Web sites or mobile applications.
To operationalize our review, we used an existing classification of social media that includes 5 main categories: collaborative projects, blogs, content communities, social networking sites, and virtual worlds.
Based on global Web traffic rankings, we included Facebook, Twitter, Wikipedia, YouTube, Instagram, Pinterest, Google+, Flickr, Myspace, LiveJournal, LinkedIn, Orkut, WordPress, Photobucket, Tumblr, plus the terms “blogs” and “wikis” in our definition.
Forums, bulletin/message boards, and chatrooms were excluded, as these technologies evolved from the bulletin board system of the 1970s and are precursors to, not examples of, contemporary social media.
Given the clinical and methodological heterogeneity of included studies, outcomes were defined as any quantitative or qualitative measure related to the medical well-being of patients.
Taxonomy Development
To better describe, classify, and analyze the current literature, we used inductive thematic analysis to develop a taxonomy for social media use in chronic diseases.
All included studies were categorized according to this taxonomy. The taxonomy was developed as follows: as the authors (RP, VC, TC) performed full text review on articles to confirm eligibility, a list of short codes to answer the subjective question, “What was the overarching role of social media in the chronic disease state studied?” were generated. Authors independently reviewed their lists to eliminate redundancy and then reviewed all of the short codes as a group using an iterative process to search for common themes or divergent ideas. Ultimately, the themes identified by the authors were collapsed into the final categories of the taxonomy, which included: support, education, disease modification, diagnosis, and disease management. The support category comprised social, emotional, and experiential support of patients and families. The education category encompassed quality assessment of existing patient education content on social media sites, novel social media-based educational tools, and comparisons of social media-based vs traditional (eg, classroom or small group) learning. The disease modification category included all interventions (ie, clinical trials) using social media-based tools. The diagnosis category included formal diagnosis of disease as well as identification of patients at risk for developing chronic illness. Disease management articles explored medical decision-making and care of acute-on-chronic disease exacerbations.
Statistical Analysis
Given substantial heterogeneity within the included studies, formal meta-analyses were not attempted.
Results
Our initial search returned 378 articles, of which 247 were excluded at the title or abstract level. A full-text review was thus performed on 131 articles, of which 42 met inclusion criteria (Figure 1).
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
A web-based intervention to support self-management of patients with type 2 diabetes mellitus: effect on self-efficacy, self-care and diabetes distress.
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
A web-based intervention to support self-management of patients with type 2 diabetes mellitus: effect on self-efficacy, self-care and diabetes distress.
A web-based intervention to support self-management of patients with type 2 diabetes mellitus: effect on self-efficacy, self-care and diabetes distress.
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
Investigate diagnostic validity of references to depression on Facebook
Cross-sectional
224 undergraduates recruited from 2 large universities
Screening of Facebook profiles for DSM-IV major depressive episode criteria with logistic regression to determine association with PHQ-9 scores via online survey
Evaluate a Facebook-based weight-loss intervention
Randomized controlled trial
52 undergraduates from a large university
3 arms: 1) private Facebook group with access to podcasts, handouts, polls, and local diet/exercise activities vs 2) private Facebook group plus texts and personalized feedback vs 3) usual care
Compare accuracy and comprehensiveness of Wikipedia to National Cancer Institute patient-oriented Physician Data Query (PDQ) entries in 10 cancer types
A web-based intervention to support self-management of patients with type 2 diabetes mellitus: effect on self-efficacy, self-care and diabetes distress.
Explore the nature of discourse in Facebook, Twitter, YouTube, and blogs on obesity
Cross-sectional
1.3 million social media posts selected from multiple sources (Facebook, Twitter, YouTube, and blogs)
Generated descriptive statistics and contextual linguistic bigrams from keywords/posts, followed by discourse analysis on a small selection of paradigmatic data excerpts
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
A web-based intervention to support self-management of patients with type 2 diabetes mellitus: effect on self-efficacy, self-care and diabetes distress.
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
A web-based intervention to support self-management of patients with type 2 diabetes mellitus: effect on self-efficacy, self-care and diabetes distress.
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
A web-based intervention to support self-management of patients with type 2 diabetes mellitus: effect on self-efficacy, self-care and diabetes distress.
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
A web-based intervention to support self-management of patients with type 2 diabetes mellitus: effect on self-efficacy, self-care and diabetes distress.
The relation between Internet and social media use and the demographic and clinical parameters, quality of life, depression, cognitive function and sleep quality in hemodialysis patients: social media and hemodialysis.
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