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Understanding the social dynamics of Twitter, Facebook and Diabetes.co.uk and their value implications for patients and health researchers

Authors:

Abstract

Health and wellness are dominant societal concerns, which is reflected in their presence on Social Media. People with diabetes use a range of Social Media to share information, build knowledge and seek peer support, but surprisingly little is known about how this behaviour varies across platforms. We drew data from a 10 day period in September 2014 from Twitter, Facebook and the Diabetes.co.uk discussion forum and classified these according to their informational and social properties, using Bales Interaction Process Analysis (IPA). Contrary to the generalisations made in previous research, Twitter is chiefly used for information dissemination, whilst Facebook and Diabetes.co.uk are also used for social interaction and peer support. These differences exist due to the structure of these platforms, including the potential for threaded discussions, the specificity of the user base and the presence of a moderator, each of which influence the nature of member interactions. Our novel findings contribute new insight about the social function of different Social Media in healthcare and the relative value of these Social Media as sources of data for health research, tools for health promotion and intervention, as well as forums for community and patient engagement.
!
Understanding the social dynamics of Twitter, Facebook and
Diabetes.co.uk and their value implications for patients and health
researchers
Joanna Taylor
Centre for Population Health Sciences,
University of Edinburgh!, United
Kingdom!
Ernst and Young AG, Switzerland
email:
joanna.taylor@ed.ac.uk
Claudia Pagliari
Centre for Population Health Sciences,
University of Edinburgh!, United
Kingdom!
email:
claudia.pagliari@ed.ac.uk
Miles Osborne
Bloomberg LP!,
United Kingdom
!email:
mosborne29@bloomberg.net
AbstractHealth and wellness are dominant societal concerns, which is
reflected in their presence on Social Media. People with diabetes use a
range of Social Media to share information, build knowledge and seek
peer support, but surprisingly little is known about how this behaviour
varies across platforms. We drew data from a 10 day period in September
2014 from Twitter, Facebook and the Diabetes.co.uk discussion forum and
classified these according to their informational and social properties,
using Bales Interaction Process Analysis (IPA). Contrary to the
generalisations made in previous research, Twitter is chiefly used for
information dissemination, whilst Facebook and Diabetes.co.uk are also
used for social interaction and peer support. These differences exist due to
the structure of these platforms, including the potential for threaded
discussions, the specificity of the user base and the presence of a
moderator, each of which influence the nature of member interactions.
Our novel findings contribute new insight about the social function of
different Social Media in healthcare and the relative value of these Social
Media as sources of data for health research, tools for health promotion
and intervention, as well as forums for community and patient
engagement.
Keywordshealth, diabetes, social media, social network, Facebook, Twitter
I. INTRODUCTION
Type 1 diabetes is a chronic autoimmune condition, which
occurs when the pancreas stops producing insulin. This results
in increased levels of glucose in the blood, putting patients at
long-term risk of heart disease, stroke, nerve damage, kidney
disease and blindness. There is currently no known cure for
Type 1 diabetes and those diagnosed are treated either by
insulin injections, insulin pump therapy, islet cell
transplantation or a pancreas transplant.
Hamm et al. (2013) concluded that patients most commonly
use Social Media as a means of supporting selfcare and that the
literature is dominated by studies of online discussion forums
and support groups, followed by dedicated social networking
sites and micro-blogs [1]. Social Media has become an
increasingly popular data source for public health researchers
to understand how members of patient communities interact
with each other regarding specific conditions [2], [3].
Previous research has focused on single platforms such as
Twitter, Facebook or condition specific online communities
[3], [4], [5]. We go beyond such studies with a view to gaining
insights into the social interactions that occur across and within
Social Media. We are not aware of any previously published
study to have compared Twitter (twitter.com) Facebook
(https://www.facebook.com/T1Diabetes ) and Diabetes.co.uk
(http://www.diabetes.co.uk/forum/category/type-1-
diabetes.19/) in relation to Type 1 diabetes. Motivated by this,
we considered the following research questions, the answers to
which will help inform the design of future successful Social
Media for the purposes of health and will help patients
understand better how they can manage their conditions using
them:
RQ1: Do diabetes Type 1 patients use different Social Media
platforms for different purposes?
RQ2: Which Social Media are successful at encouraging social
interaction and support for patients?
RQ3: What are the implications for Social Media design?
Our three Social Media embody different styles of social
interaction. Twitter and Facebook are well known, general
purpose sites. Diabetes.co.uk is a condition specific discussion
forum where users can create content and others can comment.
The rest of this paper is organised as follows. Section II
describes the methodology and datasets. Section III describes
outcome of RQ1. Section IV describes the outcome of RQ2.
Section V describes the outcome of RQ3. Section VI provides
a conclusion to close the article.
II. METHODOLOGY AND DATASETS
For our comparison of Social Media use by diabetes patients,
we took a two-stage approach: firstly we extracted and
screened posts made by 533 users from each of the three sites
and then categorised them using the Bales IPA categories.
74Copyright (c) IARIA, 2015. ISBN: 978-1-61208-424-4
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Application of Bales Interaction Process Analysis Bales
IPA system [6] was first introduced in 1951 and has been
widely used in public health research as a means of identifying
and recording the nature, not the content, of group interactions.
Bales identified and defined twelve categories of group
interaction each of which were considered when reviewing the
Type 1 diabetes posts. Each post was considered a single unit
of interaction and that the categories were not considered
mutually exclusive when applied to the sample of posts.
Twitter A random 1% sample of all available Tweets was
extracted on the 3 October 2014. The tweets were posted
between 0:00:00 (UTC) on 1 September 2014 and 23:59:59
(UTC) on 10 September 2014 and were extracted by crawling
the data through the standard publically available Twitter API
using the pre-defined search terms diabetes, type 1 diabetes, t1
diabetes, t1d and type 1.
The data extracted included the date and time of posting in
UTC, the Twitter account id and the text in the tweet. Re-
tweets were identified and any duplicates and spam were
removed. The sample of 1433 English language tweets was
manually screened. Those that referred to Type 1 diabetes,
produced a sample of 66 posts, which were subsequently
included in the categorization stage. url links included in the
tweets were not reviewed during the screening.
Facebook Using the Facebook search functionality, we
searched for Type 1 diabetes and in doing so identified the
largest Type 1 Diabetes Facebook community available.
Known as the Type 1 Diabetes Community this community
was established in 2011 and is intended to be an open forum
for people who have Type 1 diabetes to talk about anything
they want. As of 4 October 2014, it had 36,671 likes and on
this same date all wall posts and replies that were posted
between 1 and 10 September 2014 were identified by viewing
the storyline of historical posts. These posts along with the
author and the date of posting were manually extracted for
further analysis. Given the particular focus of this online
community, the sample of 479 posts were all considered
relevant to Type 1 diabetes and therefore included in the
categorisation stage.
Diabetes.co.uk Diabetes.co.uk is a global Diabetes com-
munity with over 125,000 members spanning all forms of the
condition. The Type 1 discussion forum on Diabetes.co.uk was
identified through the forum homepage and the list of
discussion threads was then filtered based on the start date 1
September 2014. All original posts and replies posted between
1 and 10 September 2014, were identified and manually
extracted. The total sample of 713 posts was included in the
categorisation stage.
Extraction and screening of relevant posts The output of
the extraction and screening of Type 1 diabetes posts are
summarised in Table 1, where we see the number of posts
extracted from each of the three Social Media, the number of
original posts and replies included in the sample and their
respective number of authors.
III. RQ1: DO DIABETES TYPE 1 PATIENTS USE
DIFFERENT SOCIAL MEDIA PLATFORMS FOR
DIFFERENT PURPOSES?
Surprisingly, although Twitter had the highest absolute
number of total posts at 1433, these results revealed that it is a
noisy source of data compared to other Social Media as only 66
posts were relevant to the condition of Type 1 diabetes.
Contrary to expectations, the results also revealed that despite
being a popular Social Media, Facebook, with a total of 479
posts, was not the most actively used platform for members to
discuss the condition. Instead the discussion forum on
Diabetes.co.uk was identified as being the most actively used
Social Medium included in the study, with a total of 713 posts
during the 10-day period.
The sample of Twitter data contained notably fewer
responses to posts (0%), than Facebook (96.6%) and
Diabetes.co.uk (94.2%). suggesting that there is a greater
degree of two-way communication between users of social
networks and discussion forums compared to micro-blogging
platforms. Twitter has less developed conversational structures,
making it harder for patients to read all related comments.
Facebook and Diabetes.co.uk posts include associated
comments that are easily found. Facebook and Diabetes.co.uk
also provided much richer posts, both in terms of length and
structured content, i.e. long chains of comments.
When analysing the data further, it was identified that the
community moderator who posted questions from anonymous
members of community created all original posts within the
Facebook community. Thus creating a degree of uncertainty, as
the number of authors contributing to original posts is not
available This is in contrast to the Diabetes.co.uk discussion
forum and Twitter where any registered member of the site
could generate an original post and that 37 and 62 members
created an original post, respectively.
It was also revealed that a single post within the Facebook
community generated a higher response rate relative to others.
The post Over/Under time again. 153. Are you over or under?
was a request from the community moderator for members to
post their current blood glucose levels. This post generated 101
responses, accounting for 21% of the total sample therefore
performing a role similar to that of an online survey.
In summary, our results for RQ1 indicate that patients do
use different Social Media platforms for different purposes as
is highlighted by the volume and conversation structures
represented in the sample. Whilst Facebook appeared to be
heavily moderated, this was weakly present in Diabetes.co.uk
and absent in Twitter. Given these differences in utility it is
natural to ask how members of the Type 1 diabetes community
use these Social Media to interact with others. Surprisingly, we
find that Diabetes.co.uk was the most actively used Social
Medium in terms of volume, whilst Facebook achieved the
highest percentage response rate. A finding widely known
within the Computer Science community but not yet reflected
in much of the published Public Health research that is
available.
75Copyright (c) IARIA, 2015. ISBN: 978-1-61208-424-4
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TABLE I. SUMMARY OF POSTS FROM 1 10 SEPTEMBER 2014
Social Media
Sample size
Screened sample size
Posts included in IPA
N (%) original posts
N authors
N (%) replies
Twitter
1433
66 (4.6%)
62
0 (0%)
66
Facebook
479
16 (3.3%)
1
463 (96.6%)
479
Diabetes.co.uk
713
41 (5.7%)
37
672 (94.2%)
713
IV. RQ2: WHICH SOCIAL MEDIA ARE SUCCESSFUL AT
ENCOURAGING SOCIAL INTERACTION AND SUPPORT
FOR PATIENTS?
The results of Bales IPA reveal differences in the nature of
interactions between users of these three Social Media. These
are described in Table II, where we see the percentage of posts
relevant to the Bales IPA categories for each of the three Social
Media. The Over/Under post accounted for one fifth of the
Facebook sample. It was therefore highlighted as a separate
line item so as to avoid potential skew of results within the
Facebook dataset.
Whilst the three Social Media are predominantly used to
disseminate suggestions, opinions and information with other
members, the highest percentage of posts; Twitter (36%),
Facebook (44%) and Diabetes.co.uk (55%) represent members
sharing their opinion. Noticeably fewer posts ask to receive
suggestions, opinions and information from other members and
the majority of these are original posts.
We observe several interesting differences in the nature of
the posts. As noted, Twitter is mainly used to disseminate
information (29%) and opinion (36%) and not for interaction.
These posts are characterised by dramatization (18%), few
friendly posts (18%) and no indications of agreement or
disagreement between members. Below shows some examples
of these Tweets.
33k kids in canada went #backtoschool with diabetes.
it’s time to make school a better places for t1d kids.
sanofi launches mobile game for kids with type 1
diabetes in the uk
did you know that the character elsa from the movie
”frozen” was in part inspired by a child with type 1
diabetes?
amazing revolution - bionic pancreas which will
automatically inject insulin to type 1 diabetes patients
an open letter to teresa may advice on her type one
diabetes
In contrast, the Type 1 Diabetes Facebook community and
Type 1 Diabetes.co.uk discussion forum were considered very
interactive with friendly posts accounting for 47% of Facebook
posts and 46% of posts on Diabetes.co.uk. The Facebook
community generated a greater percentage of agreement (12%)
and disagreement (5%) compared to the other Social Media.
Whilst the posts within the Diabetes.co.uk discussion forum,
indicate a higher percentage of tension (12%) and unfriendly
posts (3%), particularly in relation to topics such as diet and the
new treatments that are available. Limited moderation of this
forum has, therefore, enabled a greater diversity of opinion to
be represented.
The three most popular discussion threads on Facebook
community are listed in below, including the number of replies
to the original post.
Over/Under time again... 153 Are you over or under?
(101)
This may seem like an odd question but I’m more than a
little curious if other T1s experience what I do. I get bit
by mosquitos all the time. So much more than anyone
else I know. Everyone jokes that mosquitos must love
me cause my blood is so sweet. I laugh it all off cause it
seems ridiculous. However, I also seem to attract bees.
Kind of odd huh? I’m curious how many others
experience this...if any? (63)
Just want peoples advice really I’m 22yrs old been t1
diabetic since I was 6trs old I have one child but
planning another but can’t get my hba1c past 8.5 and
the docs won’t let me try till it’s 7 any tips on how to
get it down? I’m on injections novo rapid and levemir,
thanks (54)
The three most popular discussion threads on Diabete.co.uk
discussion forum are listed in below, including the number of
replies to the original post.
How highly would you recommend eating low carb? I
know this is probably a silly question as it has quite an
obvious answer! I love my carbs. I love pasta, rice and
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potatoes. In the past, I’ve tried to take the right amount
of insulin to cover this but it’s so easy to get it wrong
and misjudge it - it also means I can end up taking
whopping amounts of insulin! Would you recommend I
reduce my carbs? It should make my diabetes easier to
manage, yes? (I’m also doing Slimming World so
although I’ve read a little about LCHF, I’m not keen to
start eating loads of ’fattier’ foods!) (91)
New Flash Glucose Monitoring from Abbott Bloodless
Testing Its arrived and heres a video for all you guys
who wanted more info (76)
LCHF success stories from type 1’s I created this thread
as a place for fellow type 1 diabetics to share their
success stories on the LCHF diet. I know there is a
similar thread on the low carb forum but I found that
most of the responses were from type 2’s, so I thought
it’d be nice to have a specific place for us to share
experiences and hopefully inspire and learn from each
other! (67)
In summary, our results indicate that although the three
Social Media are all used to disseminate information about the
condition, Facebook and Diabetes.co.uk are also used for social
interaction and peer support. These findings provoke
controversy as to the validity and application of Twitter as a
popular Social Media for gaining insight into Type 1 diabetes
and in its use as a means of delivering relevant health
interventions.
V. RQ3: WHAT ARE THE IMPLICATIONS FOR SOCIAL
MEDIA DESIGN?
Although the three Social Media can be considered a valid
source of information about the clinical condition of Type 1
diabetes these platforms should not be considered equal or
synonymous as has been the case in previous public health
studies. Exciting implications are also revealed into the utility
of condition specific Social Media as a potentially more
effective means of health promotion and patient engagement.
Studies into the social shaping of technology reveal that
technology does not develop according to an inner technical
logic but is instead a social product influenced by the
conditions of its creation and use [7]. With this in mind, we
find that the way Social Media are configured and moderated
as well as, through the opportunities that they offer for certain
types of interaction [8] can shape the behaviours of Social
Media users.
For patients living with chronic and life threatening
conditions such as diabetes, different utilities are derived from
dissemination directed Social Media such as Twitter than from
interactive and community building Social Media such as
Facebook and Diabetes.co.uk. These differences in use within
healthcare are contrary to the generalisations made in existing
public health studies, which extrapolate the findings from a
single Social Media. This therefore provides interesting and
novel applications for a diverse range of research directions
that aim to understand how Social Media are used by patients
with other clinical conditions and what effect this has on the
use of Social Media for research, health interventions and
patient engagement.
TABLE II. APPLICATION OF BALES IPA TO DIABETES POSTS
Social Media
Bales IPA Categories
Shows
tension
Dramatises
Agrees
Gives Suggestions
Gives Opinion
Seems
Unfriendly
Twitter
8
18
0
20
36
0
Facebook
4
5
9
29
33
1
Facebook (minus the over/under
post)
4
6
12
37
40
1
Diabetes.co.uk
12
7
5
18
55
3
Gives info
Asks for
info
Disagrees
Asks for
Suggestions
Asks for
Opinions
Seems friendly
Twitter
29
8
0
5
6
18
Facebook
33
6
4
1
3
37
Facebook (minus the over/under
post)
15
8
5
1
3
47
Diabetes.co.uk
32
10
1
1
6
46
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VI. CONCLUSION
We presented the first results from this unique study on how
different types of Social Media are used by patients living with a
chronic condition. In doing so we defy popular assumption and
conclude that Type 1 diabetes patients use different Social Media
platforms for different purposes, with Twitter primarily used by
members for information and opinion sharing, with little support
or empathy. Whilst Diabetes.co.uk and Facebook, by virtue of
their user base, design and self moderating communities are
more successful in their utility for social interaction and peer
support by those living with this live long condition. These
findings have important implications for Social Media and their
application in the context of healthcare.
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78Copyright (c) IARIA, 2015. ISBN: 978-1-61208-424-4
GLOBAL HEALTH 2015 : The Fourth International Conference on Global Health Challenges
... However, a study comparing the use of different social media platforms by patients with Type 1 diabetes revealed variations in the purposes for which these were used, with Twitter mainly used for information and opinion sharing, with little support or empathy, and discussion forums and social networking sites used more often for social interaction and peer support. 24 We expand on the latter study here, by exploring the types of interaction and support demonstrated on different social media platforms by people affected by lung cancer, with specific reference to lung cancer hashtags on Twitter, 25 the Lung Cancer Support Group on Facebook 26 and the lung cancer discussion forum on Macmillan.org.uk. 27 In doing so, we consider the following research questions: (1) Do people affected by lung cancer use different social media in different ways? and (2) which social media are most successful at encouraging social interaction and support for people affected by lung cancer? ...
... Findings also revealed that posts by any user that are similar to an online survey would generate the most responses on Facebook, as was also the case in a previous diabetes study. 24 Examples of this include: 'how old was everyone when they were Fig. 1 Percentage of posts in the corpus of data from the Twitter lung cancer hashtags, the Lung Cancer Support Group on Facebook and the lung cancer discussion forum on Macmillian.org.uk, and their fit to Bales' IPA categories. The size of each circle represents the percentage of posts associated with each of Bales' IPA categories. ...
... 39 Findings from this study are similar in nature to that of the Type 1 diabetes comparative study from which we drew inspiration. 24 The positive correlation between social support and health is widely accepted among the public health and psychology research communities. 40 In addition to types of functional interaction shown in the posts, our analysis revealed differences in the types of social support that are being sought and offered by users of different social media. ...
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BACKGROUND: Surveillance and response to diabetes may be accelerated through engaging online diabetes social networks (SNs) in consented research. We tested the willingness of an online diabetes community to share data for public health research by providing members with a privacy-preserving social networking software application for rapid temporal-geographic surveillance of glycemic control. METHODS AND FINDINGS: SN-mediated collection of cross-sectional, member-reported data from an international online diabetes SN entered into a software application we made available in a "Facebook-like" environment to enable reporting, charting and optional sharing of recent hemoglobin A1c values through a geographic display. Self-enrollment by 17% (n = 1,136) of n = 6,500 active members representing 32 countries and 50 US states. Data were current with 83.1% of most recent A1c values reported obtained within the past 90 days. Sharing was high with 81.4% of users permitting data donation to the community display. 34.1% of users also displayed their A1cs on their SN profile page. Users selecting the most permissive sharing options had a lower average A1c (6.8%) than users not sharing with the community (7.1%, p = .038). 95% of users permitted re-contact. Unadjusted aggregate A1c reported by US users closely resembled aggregate 2007-2008 NHANES estimates (respectively, 6.9% and 6.9%, p = 0.85). CONCLUSIONS: Success within an early adopter community demonstrates that online SNs may comprise efficient platforms for bidirectional communication with and data acquisition from disease populations. Advancing this model for cohort and translational science and for use as a complementary surveillance approach will require understanding of inherent selection and publication (sharing) biases in the data and a technology model that supports autonomy, anonymity and privacy.
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The term ‘social machine’ has recently been coined to refer to Web-based systems that support a variety of socially-relevant processes. Such systems (e.g., Wikipedia, Galaxy Zoo, Facebook, and reCAPTCHA) are progressively altering the way a broad array of social activities are performed, ranging from the way we communicate and transmit knowledge, establish romantic partnerships, generate ideas, produce goods and maintain friendships. They are also poised to deliver new kinds of intelligent processing capability by virtue of their ability to integrate the complementary contributions of both the human social environment and a global nexus of distributed computational resources. This chapter provides an overview of recent research into social machines. It examines what social machines are and discusses the kinds of social machines that currently exist. It also presents a range of issues that are the focus of current research attention within the Web Science community.
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Social networking sites (SNSs) have the potential to increase the reach and efficiency of essential public health services, such as surveillance, research, and communication. The objective of this study was to conduct a systematic literature review to identify the use of SNSs for public health research and practice and to identify existing knowledge gaps. We performed a systematic literature review of articles related to public health and SNSs using PubMed, EMBASE, and CINAHL to search for peer-reviewed publications describing the use of SNSs for public health research and practice. We also conducted manual searches of relevant publications. Each publication was independently reviewed by 2 researchers for inclusion and extracted relevant study data. A total of 73 articles met our inclusion criteria. Most articles (n=50) were published in the final 2 years covered by our search. In all, 58 articles were in the domain of public health research and 15 were in public health practice. Only 1 study was conducted in a low-income country. Most articles (63/73, 86%) described observational studies involving users or usages of SNSs; only 5 studies involved randomized controlled trials. A large proportion (43/73, 59%) of the identified studies included populations considered hard to reach, such as young individuals, adolescents, and individuals at risk of sexually transmitted diseases or alcohol and substance abuse. Few articles (2/73, 3%) described using the multidirectional communication potential of SNSs to engage study populations. The number of publications about public health uses for SNSs has been steadily increasing in the past 5 years. With few exceptions, the literature largely consists of observational studies describing users and usages of SNSs regarding topics of public health interest. More studies that fully exploit the communication tools embedded in SNSs and study their potential to produce significant effects in the overall population's health are needed.