AMIA doctoral consortium

1. A comparative study of supportive interactions between e-patients across
communication functions of a social network site
Katherine Y. Chuang
College of Information Science & Technology
Drexel University, Philadelphia, PA, USA
katychuang@drexel.edu
ABSTRACT
Online health social networking allows patients and their
caretakers to seek and provide social support for health
purposes. While previous studies of online health support
groups have address a number of research issues, there is
a lack of studies that compare supportive communication
tools. This paper reports on a comparative study between
levels of social support of two social networking site
functions (discussion forum and journals). Using content
analysis to classify support types (informational and
emotional), it was found that MedHelp’s alcoholism
community members are more likely to exchange
information on the discussion forum and emotional support
on through journals. The difference in support exchanged
could be related to the communication tool design
characteristics or social roles that people perform.
Suggestions are made for future studies in this area.
Implications from this study can help health professionals
or designers of these tools.
Author Keywords
Social support, online support groups, alcoholism.
INTRODUCTION
Over 83% of internet users in the U.S. look for health
information online [1]. In this paper, these users are
considered to be e-patients. 59% of e-patients have
consulted blog comments, doctor reviews, and podcasts;
20% have posted comments, reviews, photos, audio, video
or tags related to health care [1]. As our society enters an
era of socialized online behavior, people are increasingly
tailoring their online information-gathering, targeting “just-
in-time someone-like-me” health information sharing,
especially young people between 18 and 49 years of age
[1]. E-patients are increasingly using social networking
platforms to teach each other about conditions and
treatments as a form of social support [2]. Understanding
interactions among e-patients can provide insight to health
professionals who design intervention programs for
behavior change [3-4].
A social networking site is a virtual space where registered
users can create profiles about themselves, upload photos,
keep in touch with friends and make new friends with
common interests [5]. Its distinguishing feature is the
emphasis on building and reflecting social relations.
MedHelp (www.medhelp.org) is an example of this type of
website for e-patients; it was founded in 1994 as a resource
to help patients cope with their health conditions by
connecting users with information resources (i.e. news,
clinical trials, and forums). It now hosts many users and
patient communities who communicate with each other
through forums, profiles, and journals.
Studying this type of website is important because it is the
technology that the mainstream is adopting and it is a
potentially powerful tool to use for social support. Studies
have demonstrated that online support groups can have a
positive impact on quality of life, decision making by
patients and improved health outcomes [6]. These groups
can also contribute to a sense of empowerment for patients.
Yet, clearly there are dilemmas in terms of accuracy of
information, and the long-term effect of such health
promotion interventions. These unknown variables make
research in this field compelling and practical.
This paper describes some research problems addressed by
previous studies from multiple disciplines. This paper also
reports results from a preliminary study to show a possible
avenue for future research of online support groups.
SIGNIFICANT PROBLEMS IN FIELD
Researchers who have studied online health support groups,
come from diverse backgrounds and have different research
focus, such as identifying patient-level expertise [7],
evaluating online intervention programs [3-4, 6, 8],
understanding the effects from participation in support
groups [3, 6, 9-11], or studying supportive communication
behaviors [11-14]. Research problems can be grouped into
three categories: (1) issues that concern health professionals
such as quality of information and evaluating health
outcomes; (2) issues that concern e-patients such as what
they can gain from support groups; and (3) issues that
concern the field of health informatics such as designing
technology needs to support both doctors and patients.
1. Issues concerning health professionals
Health professionals are concerned with whether patients
are misinformed by online health information. Studies have
shown that while information is sometimes wrong on these
websites, users will correct their mistakes [13]. Patients
doing their own research for health information may enjoy
feeling prepared when making a doctor visit [11]. Online
support groups often contain a lot of useful experiential
knowledge from veteran patients, such as tips for making

2. hospital visits, coping with life changes, or dealing with
insurance [7-8].
Health professionals are also concerned with health
outcomes and evaluating online intervention programs.
Online support groups can be a useful behavior change
technique for the design of interventions [3-4, 6]. The
growing popularity of social media use has inspired
healthcare professionals to look into incorporating it into
healthcare programs [2], but still much is unknown about e-
patient behavior in social media adoption.
2. Issues concerning patients
Social Support Types
Support groups are a source of social support, a broad
concept that has no generally accepted definition but is
comprised of different kinds such as informational,
emotional, or instrumental assistance [11, 13, 15]. Although
social support was studied in a variety of settings, there
lacks a standard typology. Social support types have been
described in detail by many other papers [10-11, 13-14, 17-
18] of two forms: resources intended to assist stressed
individual to solve or eliminate problems causing distress
(i.e. offering information or tangible aid), and emotional
understanding (i.e. giving compliments, recognizing
achievement, sense of belonging to group) to comfort
support seekers [19-20]. Other types of positive interactions
common among online support groups can include
introductions, expressions of gratitude or congratulations
[14, 21-22]. One line of research has attempted to describe
categories of social support behaviors, which can range
from simple to more complex categorizations (see [20, 23-
25]). Some users are more likely to offer support whereas
others are more likely to lurk [8, 14, 16]. While some social
support research looks at the roles people have in providing
support (i.e. spouses, veteran patients), there lacks studies
looking into the relational dynamics of support exchanged
from an online support group based on social network site.
Online vs. Face-to-Face support
Communication through the Internet allows people to be
anonymous, use text-based messages, interact independent
of time and place, and have many possibilities to expand
social network [26]. Computer-mediated features can affect
how people compose messages, how they acquire and
maintain relationships, and even affect group formation
[26]. On the plus side, these online support groups give
people the sense of belongingness, and to learn how to
behave and cope with situation they are in [6, 26]. On the
downside, difficulties may result from lack of visual and
aural cues found in traditional face-to-face communication
[6, 11]. Issues of cyberstalking, e-patients leaving virtual
trails, and assessing reliability of information are still of
concern of the online environment. Traditionally, doctors or
family would be first source of health information; however
the Internet opens up opportunities for people to get support
without effects of stigma.
Participation Factors
Motivations for participating in online support groups can
be from an information need or desire to be altruistic [27].
Researchers have observed that user activity levels in online
communities tend to vary by individual [10, 28-29]. This
might be because of different roles a person has (i.e.
caretaker, patient, nurse, friend, etc) or personal values.
Additionally, these websites are a great source of social
support from compassionate people who may have had
similar experiences [10-11, 30]. The more time people
spend in an online group, the larger their online social
network and the higher the satisfaction with the received
support [31].
Several studies have investigated social support exchanges
for various online patient communities such as breast
cancer [7], disabilities [13], HIV/Aids [21], eating disorders
[17], psychosis [14], and depression [22]. Participation in
online health communities may be impacted by on the
stigma attached to the illness [21, 32], rarity of disease, age
[11, 33], or gender [34]. Participation may also be because
people want to socially compare themselves with others to
stand out, or to find people to fit in with for sense of
belongingness. More research is needed to understand how
social support provision and seeking is influenced by an
individual’s social connections.
3. Issues concerning health informatics
Much of the research in health informatics focuses on
designing electronic health records, databases systems, or
expert systems, rather than social computing for consumers.
Of the small but growing body of literature on Internet-
based patient communities, researchers identified patient
expertise [7] and various types of support [7, 17-20] from
interactions in discussion forums, or how collect patient
data could help medical research. What has not been
studied as much are interactions exchanged on websites
specifically geared towards communication between
individuals who have a relationship with each other, i.e.
blogs or a social network site. Further research to increase
understanding of social interactions on this type of platform
is needed since social networking is predicted to increase in
popularity in the future [21].
EXISTING SOLUTIONS
Previous studies focused their research objectives on
various issues: studying the strategies for soliciting support
[18]; investigating various support types [7, 17-20];
understanding the nature of shared patient expertise such as
problems in coping with breast cancer and
recommendations [7]; identifying types of group
interactions [22] such as sharing personal experience,
expression of gratitude, and offering congratulations can
facilitate social support exchanges among group members;
and last in comparing online empathy with offline empathy
[20]. All the aforementioned studies used data from
discussion boards rather than social network sites.

3. This study focuses on the supportive interactions through
communication functions of a social network site. It is
different from previous studies because it views
communication medium as a tool in seeking support and
that its’ selection can have impact on interactions.
RESEARCH QUESTIONS
New social media technology shows a gap in research
literature that studies interactions between e-patients. The
research question that can be addressed at this time is,
“What is the impact of communication channels on
interactions where social support is exchanged across social
media (i.e. discussion forums, and journals)?” This question
could be explored more fully with more specific questions
such as the following:
1. Do users select different communication tools for
different purposes?
2. What are patterns of supportive interactions across
social media?
3. What are the different supportive roles people perform
while participating in their social network and how is it
communicated?
PRELIMINARY ANALYSIS
This section discusses some preliminary research ideas and
a proposed approach to compare two data samples. Social
support types were identified in an online alcoholism
community for comparison between threads on a discussion
forum (a public tool) vs. user journals (more personal).
Preliminary results on the levels of social support identified
are reported. Knowing characteristics of social support
offered and sought in these virtual groups will help us to
better understand the range of information needs (i.e.
advice) in a supportive electronic environment.
MedHelp has a few communication tools for members to
use in conveying social support. The discussion forums are
publicly accessible by members and nonmembers alike,
where each thread is structured by an initial post and
corresponding comments replied to the post. Users’
journals follow the same structure – posts and comments –
but privacy level can be set to private, friends only, or
everybody. Each user has the option to show activity on
their profile page – i.e. new journal and forum posts,
whereas forum activity is all displayed on the forum page.
Approach
The MedHelp alcoholism community was selected for this
preliminary study. Data was obtained from the discussion
forum and the journals from members of the community
using a web crawler on September 9th
, 2009. Because
emotional content is not currently recognizable with
automatic methods, a qualitative content analysis was used
to classify support types from three months time period.
Concepts for coding social support types were developed
first by reviewing related studies, their definitions and
examples. Concepts were grouped into three high-level
categories – informational, emotional, instrumental –
proposed by [23]. These concepts are appropriate for this
study as it was used in similar studies [13-14, 17-18]. Next
the codes were tested on a small sample (n=10) to verify the
applicability of definitions to alcoholism related messages
and modified as necessary. Frequencies of each code
category were calculated to analyze the overall levels of
activity per support category (i.e. how many posts have
each type of support?). We ignore typos and grammatical
errors in messages. There may be instances where a support
type occurs multiple times in a message (i.e. two book
referrals) the type is counted only once per message.
Coding Scheme
There were three support types with sublevel concepts.
Messages were coded by sublevel concept then grouped
into the top level category for comparing informational vs.
emotional supports. Instrumental support was not found in
this data and not reported.
Informational support in posts provide information (i.e.
personal background information, describing certain
incidents, coping techniques, etc.) or request information
(i.e. advice, opinions, etc.) [14, 17-18, 23]. Subcategories
include: advice, facts, personal experiences, information
referral, and opinions.
Nurturant support in posts provides emotional expressions
of caring or concern (i.e. alleviating feelings of guilt,
empathy, etc.) or can implicitly ask for support (i.e.
validation of problem or feelings, presence of others to
avoid feeling alone, etc.) [17-18, 23-25] Subcategories
include: esteem, network, and emotional.
Instrumental Support: provision of material or financial aid,
or services [14, 17-18, 23]. There are no examples available
from the dataset. An example is offering to drive someone
to Alcoholics Anonymous meeting.
Results
The first sample consists of forum posts (FP=81) and
comments (FC=412), which totals to 493 messages. Forum
posts were created by patients themselves (n=56) or
caretakers (n=14). 11 posts remain unidentified. The second
sample had 423 messages, composed of journal posts
(JP=88) and comments (JC=335).
Sample Forums Journals
Size N = 493 N = 423
Posts FP = 81 JP = 88
Comments FC = 412 JC = 335
Figure 1. Sample Sizes
The results from forum threads and journals are presented
first by support type offered and then by support type
sought. Instrumental support was not found in either sample
and thus not presented in this section.
Support Offered
Forum messages offered more informational support
(84.7%) than nurturant support (58.6%). On the other hand,

4. journal messages were more likely to have offered nurturant
support (80.3%) than informational support (53.1%).
275
65
276
13
174
81
351
67
(n=335) JC
(n=88) JP
(n=412) FC
(n=81) FP
Informational Nurturant
Figure 2. Offered Support
82.7% of forum posts provided informational support. For
instance, users often introduced themselves by describing
how much they drink. Users were less likely to start threads
offering nurturant support (16%) such as encouragement to
stay sober. Some messages offered both information and
emotional support. Many comments (85.2%) offered
information such as updates on a situation or answering
questions in the posts, while a lesser majority (66.9%)
offered emotional support such as sympathy.
92.0% of journal posts provided some form of information
and less likely to have an emotional nature (73.8%). 51.2%
of the comments offered some form of information in
response to the journal post, whereas 82.0% of comments
offered nurturant.
Requested Support
Forum users sought more informational support (24.9%)
than emotional support (15%), and journal users sought
more emotional support (14.6%) than information (10.6%).
14
32
26
36
28
12
64
59
(n=335) …
(n=88) JP
(n=412) …
(n=81) FP
Informational Nurturant
Figure 3. Requested Support
72.8% forum posts sought information (i.e. recommended
drugs for treatment). A smaller 44.4% sought emotional
support. However, the comments had much less requested
support. 15.5% sought informational support such as
clarification of information and a minimal 6.3% were
looking for emotional support such as validation.
13.6% journal posts sought information such as advice or
other topics unrelated to alcohol abuse (i.e. pregnancy).
Much more posts (36.3%) express need for emotional
support. Conversely, in the comments there was
significantly less requested support. 8.35% sought
informational support such as clarification and a minimal
0.29% was looking for emotional support.
For both samples, forum users were more likely to
exchange information than any other type of support.
Journal posts were more likely to request emotional
support, and journal comments are likely to respond with
provision of emotional support. This might be related to the
connection between individuals using journals who interact
at a more intimate level. Additionally, users may be using
the forum as a way to reach out to a greater network to ask
for opinions. Research on Yahoo! Answers portal shows a
large percentage of users asking for opinions, which may
indicate a need for advice on everyday decisions [26]. It
seems that users choose each communication tool for
different purposes [27].
Suggested Research
In the subsequent phases of the preliminary study,
investigations will be made to understand more about social
relations among users who exchange social support. Social
psychology research explored issues relationship intimacy
and trust [28-29] as a factor for exchanging social support.
People have relationships in different contexts of shared
experience (i.e. work, family, book club) [11] and these
relations may impact motives for participating in online
support groups.
The concept of social network analysis (i.e. measuring
closeness of two individuals, the strength of their tie, and
their social roles) to study how multiple individuals interact
with each other in a larger group setting may be useful. A
mixed methods approach would be needed to integrate
study of social support types with relational dynamics.
Contributions from research
In this study, we have compared the social supports in
forum and journal formats of MedHelp. The result in this
work can be useful in many ways: (1) providing more
insights to technological design factors and purpose behind
supportive communications, and (2) providing insights on
how online intervention program can be developed and
promoted.
ISSUES FOR DISCUSSION AT CONSORTIUM
It would be wonderful to have the opportunity to discuss the
pros and cons of this research direction that compares social
media communication functions. Here are some specific
questions: How to do further qualitative analysis and report
results in such a way that multiple samples can be
compared? Would social network analysis metrics be useful
to this line of work, for future understanding of patterns of
behavior (i.e. measuring in/out degrees, centrality, etc.)?

5. CONCLUSION
The increase of people searching for health information
online and using social media opens up a new door for
considering this technology for online intervention
programs. This paper summarized research literature
relating to the study online support groups. A preliminary
study was reported as an example of further research in the
field. Some ideas for future studies were suggested as well
as their contributions.
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