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A call for better understanding of social media in surveillance and management of noncommunicable diseases

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Abstract

Using social media for health purposes has attracted much attention over the past decade. Given the challenges of population ageing and changes in national health profile and disease patterns following the epidemiologic transition, researchers and policy-makers should pay attention to the potential of social media in chronic disease surveillance, management and support. This commentary overviews the evidence base for this inquiry and outlines the key challenges to research laying ahead. The authors provide concrete suggestions and recommendations for developing a research agenda to guide future investigation and action on this topic.
Luietal. Health Res Policy Sys (2021) 19:18
https://doi.org/10.1186/s12961-021-00683-4
COMMENTARY
A call forbetter understanding ofsocial
media insurveillance andmanagement
ofnoncommunicable diseases
Chi‑Wai Lui1, Zaimin Wang2,3, Ning Wang3, Gabriel Milinovich3, Hang Ding4, Kerrie Mengersen5,
Hilary Bambrick3 and Wenbiao Hu3*
Abstract
Using social media for health purposes has attracted much attention over the past decade. Given the challenges of
population ageing and changes in national health profile and disease patterns following the epidemiologic transition,
researchers and policy‑makers should pay attention to the potential of social media in chronic disease surveillance,
management and support. This commentary overviews the evidence base for this inquiry and outlines the key chal‑
lenges to research laying ahead. The authors provide concrete suggestions and recommendations for developing a
research agenda to guide future investigation and action on this topic.
Keywords: Social media, Noncommunicable diseases, Surveillance, Management
© The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which
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licence, visit http://creat iveco mmons .org/licen ses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creat iveco
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Main text
We are living in a global digital age and social media has
become embedded in almost every aspect of our daily
life. Social media, as Nicole Ellison and Danah Boyd [1]
explained, is ‘a networked communication platform in
which participants (1) have uniquely identifiable profiles
that consist of user-supplied content, content provided
by other users, and/or system-level data; (2) can publicly
articulate connections that can be viewed and traversed
by others; and (3) can consume, produce, and/or interact
with streams of user-generated content provided by their
connections on the site’ (emphasis in original). With the
proliferation of the Internet, social media has developed
into a primary medium from which people seek or share
health information and experiences, or search for sup-
port [2, 3].
Over the past decades, health professionals and
researchers have learned of the value and potential of
social media in data gathering, patient education and
engagement [4, 5]. In particular, the analytics of data
produced by social network sites or groups has been
considered an effective and low-cost approach to com-
plement traditional public health surveillance approaches
[6]. However, many of these discussions have centred on
acute or epidemic-prone communicable diseases and
there is a scarcity of literature on the role of social media
in the surveillance of chronic illness. A systematic review
of applying Internet-based sources for public health sur-
veillance found that only about 11% (17 out of 162) of the
studies on this topic focus on chronic disease [7].
Given population ageing and changes in health pro-
files and disease patterns, there is a shift in global health
system focus from treatment to care and management of
long-term conditions. e epidemiologic transition to
noncommunicable diseases calls for a paradigm shift in
healthcare in favour of service integration, community
care, partnership and teamwork, and patient as a princi-
pal caretaker [8]. In 2011, as a response to the emergence
of chronic disease pandemics the United Nations Gen-
eral Assembly made a joint declaration on preventing and
controlling noncommunicable diseases worldwide. In
Open Access
*Correspondence: w2.hu@qut.edu.au
3 School of Public Health and Social Work, Queensland University
of Technology, Brisbane, QLD, Australia
Full list of author information is available at the end of the article
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Luietal. Health Res Policy Sys (2021) 19:18
such a context, this commentary overviews the existing
evidence in using social media data or platform for tack-
ling chronic diseases. It aims to raise attention of health
professionals and policy-makers on the potential of these
approaches in global health, identify issues requiring fur-
ther investigation, and suggest areas for implementation
to address critical chronic health issues.
Potentials ofsocial media forchronic disease surveillance
andmanagement
ere is evidence that social media is an important
source for patients of chronic disease to seek health
information [2, 9, 10]. But for many people living with
a long-term condition, social media platforms are more
than just an information vending machine. ey also act
as a forum for the exchange of lived experience around
chronic disease, a source of emotional and instrumental
support, or a place to comment on or recommend care
services [1114]. ese diverse uses of social media play
crucial roles in the self-management of chronic diseases.
A systematic review found that online communities have
several key functions in the management of chronic con-
ditions including work, identity, social support and con-
nectivity, experiential knowledge sharing, collective voice
and mobilization [15]. Further to this, identity, flexibility,
structure, narration and adaptation have been identified
in another review as the affordances underpinning the
effects of social media in chronic disease management
[16].
Although misinformation about health can spread
rapidly through social media, attitudes and practices
regarding chronic illness shared within online platforms
also create a valuable resource for public health surveil-
lance and monitoring [17]. Research findings confirmed
that social media users openly discussed a wide variety
of health practices, dietary and lifestyle behaviours in
real time and these exchanges are valuable for identify-
ing populations who have or are at risk of developing
noncommunicable disease [1820]. A recent review of
applications of big data analytics to chronic disease man-
agement found evidence of using social media data to
determine risk factors and patient readmission, increase
diagnostic accuracy and patient outcome, achieve better
treatment guidance and cost reduction [21]. Applying big
data analytics to address chronic disease is still much in
its infancy but has shown significant promise.
Researchers and policy-makers have learned of the
potential of social media tools and mobile health apps
to be incorporated into disease management and edu-
cation for lifestyle modification [22, 23]. Existing evi-
dence suggests that using social media improves care
and health outcomes of chronic disease patients and
that reports of adverse events or harm are rare [16]. A
recent meta-analysis of 53 systematic reviews of online
interventions to support self-management of chronic
conditions confirmed that such intervention is a viable
and safe option for delivery of support in long-term
conditions, especially heart failure and type 2 diabe-
tes mellitus [24]. Using social media in supporting the
psychosocial management of chronic conditions is
an area of particular optimism [15, 16]. e benefits
of web-based interventions for treating depression in
people with chronic illness have been established [25].
However, there is an urgent need for evidence of social
media as a means of psychosocial support for other
chronic diseases, such as arthritis, back pain and can-
cer, which constitute a major portion of global disease
burden.
Whilst there are descriptive accounts of online com-
munities of people living with chronic disease, little is
known of the properties of these communities and how
they function and evolve over time [26, 27]. Given that
social media and adjacent technologies are a complex and
fast-changing phenomenon, there is a need for continu-
ous research on the dimensions of affordances, affective
forces and agency provided in different online platforms
and the complex ways participants are engaging with
each other in these sites and contributing to health infor-
mation or disease-management practice.
Conclusions: challenges ahead
Social media as a platform for open communication and
source of data has considerable potential for understand-
ing how people perceive and manage chronic condi-
tions in everyday life. e growing popularity of social
media worldwide as a source for health information and
discussion presents an unprecedented opportunity for
researchers to collect data and connect with people living
with chronic conditions. e time has come for develop-
ing a public health research agenda to guide investigation
on this topic.
In Australia, the Federal Government invested over
$200 million in 2018 to support the development of digi-
tal health initiatives via the National Health and Medical
Research Council Centre of Research Excellence in Digi-
tal Health (https ://digit alhea lth.edu.au/) and the latter
will play a key role in facilitating and supporting multi-
disciplinary and collaborative research in chronic disease
in years to come. Specifically, we call for targeted inves-
tigation into using social media for chronic disease sur-
veillance and management; and to advance research, we
recommend the research community to focus on:
• developing integrated approaches to collecting and
analysing social media data from both traditional and
Page 3 of 4
Luietal. Health Res Policy Sys (2021) 19:18
newly emerged platforms to gain an understanding of
experiences across the entire chronic disease contin-
uum;
designing novel methods for extracting signals from
social media data to identify upstream risk factors;
developing advanced spatiotemporal statistical mod-
els based on social media data to monitor trends of
noncommunicable diseases or behaviour patterns;
developing an understanding of social media strate-
gies for the delivery of support and intervention for
improving self-management of chronic conditions;
exploring evidence-based approaches to utilise social
media networks and technologies to elicit beneficial
behaviour modification, improve health promotion,
and fight bad health advice or misinformation;
identifying legal and ethical issues in and construct-
ing guidelines for using social media data for the pre-
vention and control of chronic diseases; and
developing a policy framework for evaluating the
quality and validity of publicly available health infor-
mation and lifestyle recommendations in social
media.
Acknowledgements
This research was supported by Grant Development Funding of the School of
Public Health and Social Work, Queensland University of Technology.
Authors’ contributions
Conception: CL, WH. Drafting initial manuscript: CL. Writing and revising it criti‑
cally for intellectual content: CL, ZW, NW, GM, HD, KM, HB, WH. All authors read
and approved the final manuscript.
Funding
Grant Development Funding of the School of Public Health and Social Work,
Queensland University of Technology.
Availability of data and materials
Not applicable.
Ethics approval and consent to participate
Not applicable.
Consent for publication
Not applicable.
Competing interests
The authors declare no conflict of interest regarding the publication of this
article.
Author details
1 School of Public Health, The University of Queensland, Brisbane, QLD,
Australia. 2 Centre for Chronic Disease, School of Clinical Medicine, The
University of Queensland, Brisbane, QLD, Australia. 3 School of Public Health
and Social Work, Queensland University of Technology, Brisbane, QLD,
Australia. 4 RECOVER Injury Research Centre, Faculty of Health and Behavioural
Sciences, The University of Queensland, Brisbane, QLD 4059, Australia. 5 ARC
Centre of Excellence for the Mathematical and Statistical Frontiers, School
of Mathematical Sciences, Queensland University of Technology, Brisbane,
QLD, Australia.
Received: 15 July 2020 Accepted: 24 January 2021
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Background: Multiple sclerosis (MS) is a chronic neurological disease occurring mostly in women of childbearing age. Pregnant women with MS are usually excluded from clinical trials; as users of the internet, however, they are actively engaged in threads and forums on social media. Social media provides the potential to explore real-world patient experiences and concerns about the use of medicinal products during pregnancy and breastfeeding. Objective: This study aimed to analyze the content of posts concerning pregnancy and use of medicines in online forums; thus, the study aimed to gain a thorough understanding of patients' experiences with MS medication. Methods: Using the names of medicinal products as search terms, we collected posts from 21 publicly available pregnancy forums, which were accessed between March 2015 and March 2018. After the identification of relevant posts, we analyzed the content of each post using a content analysis technique and categorized the main topics that users discussed most frequently. Results: We identified 6 main topics in 70 social media posts. These topics were as follows: (1) expressing personal experiences with MS medication use during the reproductive period (55/70, 80%), (2) seeking and sharing advice about the use of medicines (52/70, 74%), (3) progression of MS during and after pregnancy (35/70, 50%), (4) discussing concerns about MS medications during the reproductive period (35/70, 50%), (5) querying the possibility of breastfeeding while taking MS medications (30/70, 42%), and (6) commenting on communications with physicians (26/70, 37%). Conclusions: Overall, many pregnant women or women considering pregnancy shared profound uncertainties and specific concerns about taking medicines during the reproductive period. There is a significant need to provide advice and guidance to MS patients concerning the use of medicines in pregnancy and postpartum as well as during breastfeeding. Advice must be tailored to the circumstances of each patient and, of course, to the individual medicine. Information must be provided by a trusted source with relevant expertise and made publicly available.
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Background: Nowadays, the use of social media is part of daily life, with more and more people, including governments and health organizations, using at least one platform regularly. Social media enables users to interact among large groups of people that share the same interests and suffer the same afflictions. Notably, these channels promote the ability to find and share information about health and medical conditions. Objective: This study aimed to characterize the bowel disease (BD) community on Twitter, in particular how patients understand, discuss, feel, and react to the condition. The main questions were as follows: Which are the main communities and most influential users?; Where are the main content providers from?; What are the key biomedical and scientific topics under discussion? How are topics interrelated in patient communications?; How do external events influence user activity?; What kind of external sources of information are being promoted? Methods: To answer these questions, a dataset of tweets containing terms related to BD conditions was collected from February to August 2018, accounting for a total of 24,634 tweets from 13,295 different users. Tweet preprocessing entailed the extraction of textual contents, hyperlinks, hashtags, time, location, and user information. Missing and incomplete information about the user profiles was completed using different analysis techniques. Semantic tweet topic analysis was supported by a lexicon-based entity recognizer. Furthermore, sentiment analysis enabled a closer look into the opinions expressed in the tweets, namely, gaining a deeper understanding of patients' feelings and experiences. Results: Health organizations received most of the communication, whereas BD patients and experts in bowel conditions and nutrition were among those tweeting the most. In general, the BD community was mainly discussing symptoms, BD-related diseases, and diet-based treatments. Diarrhea and constipation were the most commonly mentioned symptoms, and cancer, anxiety disorder, depression, and chronic inflammations were frequently part of BD-related tweets. Most patient tweets discussed the bad side of BD conditions and other related conditions, namely, depression, diarrhea, and fibromyalgia. In turn, gluten-free diets and probiotic supplements were often mentioned in patient tweets expressing positive emotions. However, for the most part, tweets containing mentions to foods and diets showed a similar distribution of negative and positive sentiments because the effects of certain food components (eg, fiber, iron, and magnesium) were perceived differently, depending on the state of the disease and other personal conditions of the patients. The benefits of medical cannabis for the treatment of different chronic diseases were also highlighted. Conclusions: This study evidences that Twitter is becoming an influential space for conversation about bowel conditions, namely, patient opinions about associated symptoms and treatments. So, further qualitative and quantitative content analyses hold the potential to support decision making among health-related stakeholders, including the planning of awareness campaigns.
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Fibromyalgia is a chronic illness with primary symptoms of widespread pain and fatigue. Social media applications have become a recent resource allowing individuals with fibromyalgia to interact in a virtual community devoted to the illness. This study explores how such a community develops and maintains itself on Instagram and the ways it creates social capital for its users. Data are derived from Instagram posts and open-ended questionnaires completed by users living with fibromyalgia who use the application. Using content analysis and semiotic methodology, the study analyzes the diverse ways in which users shared their experiences with fibromyalgia, the management of its symptoms, and issues encountered in accessing health care systems. Instagram aids in the development of a community by facilitating intimate and supportive interactions about the illness and the creation of personalized day-to-day narratives accessible to all. Norms of trust, acceptance, and reciprocity characterize the diversity of interactions in this community.
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Background: Self-management support can improve health and reduce health care utilization by people with long-term conditions. Online communities for people with long-term conditions have the potential to influence health, usage of health care resources, and facilitate illness self-management. Only recently, however, has evidence been reported on how such communities function and evolve, and how they support self-management of long-term conditions in practice. Objective: The aim of this study is to gain a better understanding of the mechanisms underlying online self-management support systems by analyzing the structure and dynamics of the networks connecting users who write posts over time. Methods: We conducted a longitudinal network analysis of anonymized data from 2 patients' online communities from the United Kingdom: the Asthma UK and the British Lung Foundation (BLF) communities in 2006-2016 and 2012-2016, respectively. Results: The number of users and activity grew steadily over time, reaching 3345 users and 32,780 posts in the Asthma UK community, and 19,837 users and 875,151 posts in the BLF community. People who wrote posts in the Asthma UK forum tended to write at an interval of 1-20 days and six months, while those in the BLF community wrote at an interval of two days. In both communities, most pairs of users could reach one another either directly or indirectly through other users. Those who wrote a disproportionally large number of posts (the superusers) represented 1% of the overall population of both Asthma UK and BLF communities and accounted for 32% and 49% of the posts, respectively. Sensitivity analysis showed that the removal of superusers would cause the communities to collapse. Thus, interactions were held together by very few superusers, who posted frequently and regularly, 65% of them at least every 1.7 days in the BLF community and 70% every 3.1 days in the Asthma UK community. Their posting activity indirectly facilitated tie formation between other users. Superusers were a constantly available resource, with a mean of 80 and 20 superusers active at any one time in the BLF and Asthma UK communities, respectively. Over time, the more active users became, the more likely they were to reply to other users' posts rather than to write new ones, shifting from a help-seeking to a help-giving role. This might suggest that superusers were more likely to provide than to seek advice. Conclusions: In this study, we uncover key structural properties related to the way users interact and sustain online health communities. Superusers' engagement plays a fundamental sustaining role and deserves research attention. Further studies are needed to explore network determinants of the effectiveness of online engagement concerning health-related outcomes. In resource-constrained health care systems, scaling up online communities may offer a potentially accessible, wide-reaching and cost-effective intervention facilitating greater levels of self-management.
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Background: Although much research has been done investigating the roles of social network sites (SNSs) in linking patients and health professionals, there is a lack of information about their uses, benefits, and limitations in connecting health professions only for professional communication. Objective: This review aimed to examine the utilization of SNSs for communication among health professionals in (1) frontline clinical practice, (2) professional networks, and (3) education and training to identify areas for future health communication research. Methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines. A systematic search of the literature published in the last 10 years (January 1, 2007, to March 1, 2017) was performed in March 2017, using the following electronic databases: MEDLINE via OvidSP, EMBASE, CINAHL Complete, and InfoSci-Journals. The searches were conducted using the following defined search terms: "social media" OR "social network" OR "social network site" OR "Facebook" OR "Twitter" OR "Linkedin" OR "Instagram" OR "Weibo" OR "Whatsapp" OR "Telegram" OR "WeChat" AND "health" OR "health profession." Results: Of the 6977 papers retrieved, a total of 33 studies were included in this review. They were exploratory in nature, and the majority used surveys (n=25) and interviews (n=6). All retrieved studies stated that SNSs enhanced effective communication and information sharing. SNSs were used for supporting delivering of clinical services, making referrals, and sharing information. They were beneficial to network building and professional collaboration. SNSs were novel tools to enhance educational interactions among peers, students, instructors, and preceptors. The application of SNSs came with restraints in technical knowledge, concerns on data protection, privacy and liability, issues in professionalism, and data protection. Conclusions: SNSs provide platforms facilitating efficient communication, interactions, and connections among health professionals in frontline clinical practice, professional networks, education, and training with limitations identified as technical knowledge, professionalism, and risks of data protection. The evolving use of SNSs necessitates robust research to explore the full potential and the relative effectiveness of SNSs in professional communication.
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Background Public health surveillance is based on the continuous and systematic collection, analysis, and interpretation of data. This informs the development of early warning systems to monitor epidemics and documents the impact of intervention measures. The introduction of digital data sources, and specifically sources available on the internet, has impacted the field of public health surveillance. New opportunities enabled by the underlying availability and scale of internet-based sources (IBSs) have paved the way for novel approaches for disease surveillance, exploration of health communities, and the study of epidemic dynamics. This field and approach is also known as infodemiology or infoveillance. Objective This review aimed to assess research findings regarding the application of IBSs for public health surveillance (infodemiology or infoveillance). To achieve this, we have presented a comprehensive systematic literature review with a focus on these sources and their limitations, the diseases targeted, and commonly applied methods. Methods A systematic literature review was conducted targeting publications between 2012 and 2018 that leveraged IBSs for public health surveillance, outbreak forecasting, disease characterization, diagnosis prediction, content analysis, and health-topic identification. The search results were filtered according to previously defined inclusion and exclusion criteria. Results Spanning a total of 162 publications, we determined infectious diseases to be the preferred case study (108/162, 66.7%). Of the eight categories of IBSs (search queries, social media, news, discussion forums, websites, web encyclopedia, and online obituaries), search queries and social media were applied in 95.1% (154/162) of the reviewed publications. We also identified limitations in representativeness and biased user age groups, as well as high susceptibility to media events by search queries, social media, and web encyclopedias. Conclusions IBSs are a valuable proxy to study illnesses affecting the general population; however, it is important to characterize which diseases are best suited for the available sources; the literature shows that the level of engagement among online platforms can be a potential indicator. There is a necessity to understand the population’s online behavior; in addition, the exploration of health information dissemination and its content is significantly unexplored. With this information, we can understand how the population communicates about illnesses online and, in the process, benefit public health.
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Danish adults with type 1 diabetes value peer-to-peer interaction through the social media platform Facebook as a way to quickly exchange knowledge on essential everyday self-care for chronic illness. In this praxiographic study, following informants into online and offline social dimensions, I explore how they use Facebook to exchange self-care knowledge based on practical experiments and negotiations between bodies, technologies and daily lives. When in doubt about how to self-care on a daily basis, Danish adults with type 1 diabetes look to Facebook for inspiration and peer support. A synergistic process of online searching and sharing and offline tinkering with self-care generates person-centred knowledge about how to live with illness that is situated to individual needs and unique daily lives. Facebook can be viewed as an emergent space for biosociality through which knowledge about how to self-care become co-constructed by peers based on their pragmatic experiences of self-care on a daily and ongoing basis.