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Luietal. Health Res Policy Sys (2021) 19:18
https://doi.org/10.1186/s12961-021-00683-4
COMMENTARY
A call forbetter understanding ofsocial
media insurveillance andmanagement
ofnoncommunicable 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
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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
Page 2 of 4
Luietal. 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 ofsocial media forchronic disease surveillance
andmanagement
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 [11–14]. 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 [18–20]. 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
Luietal. 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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