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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
ABSTRACT to help patients cope with their health conditions by
Online health social networking allows patients and their connecting users with information resources (i.e. news,
caretakers to seek and provide social support for health clinical trials, and forums). It now hosts many users and
purposes. While previous studies of online health support patient communities who communicate with each other
groups have address a number of research issues, there is through forums, profiles, and journals.
a lack of studies that compare supportive communication
Studying this type of website is important because it is the
tools. This paper reports on a comparative study between
technology that the mainstream is adopting and it is a
levels of social support of two social networking site
potentially powerful tool to use for social support. Studies
functions (discussion forum and journals). Using content
have demonstrated that online support groups can have a
analysis to classify support types (informational and
positive impact on quality of life, decision making by
emotional), it was found that MedHelp’s alcoholism
patients and improved health outcomes . These groups
community members are more likely to exchange
can also contribute to a sense of empowerment for patients.
information on the discussion forum and emotional support
Yet, clearly there are dilemmas in terms of accuracy of
on through journals. The difference in support exchanged
information, and the long-term effect of such health
could be related to the communication tool design
promotion interventions. These unknown variables make
characteristics or social roles that people perform.
research in this field compelling and practical.
Suggestions are made for future studies in this area.
Implications from this study can help health professionals This paper describes some research problems addressed by
or designers of these tools. 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.
Social support, online support groups, alcoholism.
SIGNIFICANT PROBLEMS IN FIELD
Researchers who have studied online health support groups,
Over 83% of internet users in the U.S. look for health
come from diverse backgrounds and have different research
information online . In this paper, these users are
focus, such as identifying patient-level expertise ,
considered to be e-patients. 59% of e-patients have
evaluating online intervention programs [3-4, 6, 8],
consulted blog comments, doctor reviews, and podcasts;
understanding the effects from participation in support
20% have posted comments, reviews, photos, audio, video
groups [3, 6, 9-11], or studying supportive communication
or tags related to health care . As our society enters an
behaviors [11-14]. Research problems can be grouped into
era of socialized online behavior, people are increasingly
three categories: (1) issues that concern health professionals
tailoring their online information-gathering, targeting “just-
such as quality of information and evaluating health
in-time someone-like-me” health information sharing,
outcomes; (2) issues that concern e-patients such as what
especially young people between 18 and 49 years of age
they can gain from support groups; and (3) issues that
. E-patients are increasingly using social networking
concern the field of health informatics such as designing
platforms to teach each other about conditions and
technology needs to support both doctors and patients.
treatments as a form of social support . Understanding
interactions among e-patients can provide insight to health
professionals who design intervention programs for 1. Issues concerning health professionals
behavior change [3-4]. Health professionals are concerned with whether patients
are misinformed by online health information. Studies have
A social networking site is a virtual space where registered shown that while information is sometimes wrong on these
users can create profiles about themselves, upload photos, websites, users will correct their mistakes . Patients
keep in touch with friends and make new friends with doing their own research for health information may enjoy
common interests . Its distinguishing feature is the feeling prepared when making a doctor visit . Online
emphasis on building and reflecting social relations. support groups often contain a lot of useful experiential
MedHelp (www.medhelp.org) is an example of this type of knowledge from veteran patients, such as tips for making
website for e-patients; it was founded in 1994 as a resource
hospital visits, coping with life changes, or dealing with Participation Factors
insurance [7-8]. Motivations for participating in online support groups can
be from an information need or desire to be altruistic .
Health professionals are also concerned with health
Researchers have observed that user activity levels in online
outcomes and evaluating online intervention programs.
communities tend to vary by individual [10, 28-29]. This
Online support groups can be a useful behavior change
might be because of different roles a person has (i.e.
technique for the design of interventions [3-4, 6]. The
caretaker, patient, nurse, friend, etc) or personal values.
growing popularity of social media use has inspired
Additionally, these websites are a great source of social
healthcare professionals to look into incorporating it into
support from compassionate people who may have had
healthcare programs , but still much is unknown about e-
similar experiences [10-11, 30]. The more time people
patient behavior in social media adoption.
spend in an online group, the larger their online social
network and the higher the satisfaction with the received
2. Issues concerning patients support .
Social Support Types Several studies have investigated social support exchanges
Support groups are a source of social support, a broad for various online patient communities such as breast
concept that has no generally accepted definition but is
cancer , disabilities , HIV/Aids , eating disorders
comprised of different kinds such as informational, , psychosis , and depression . Participation in
emotional, or instrumental assistance [11, 13, 15]. Although online health communities may be impacted by on the
social support was studied in a variety of settings, there
stigma attached to the illness [21, 32], rarity of disease, age
lacks a standard typology. Social support types have been [11, 33], or gender . Participation may also be because
described in detail by many other papers [10-11, 13-14, 17- people want to socially compare themselves with others to
18] of two forms: resources intended to assist stressed
stand out, or to find people to fit in with for sense of
individual to solve or eliminate problems causing distress belongingness. More research is needed to understand how
(i.e. offering information or tangible aid), and emotional social support provision and seeking is influenced by an
understanding (i.e. giving compliments, recognizing
individual’s social connections.
achievement, sense of belonging to group) to comfort
support seekers [19-20]. Other types of positive interactions
3. Issues concerning health informatics
common among online support groups can include
Much of the research in health informatics focuses on
introductions, expressions of gratitude or congratulations
designing electronic health records, databases systems, or
[14, 21-22]. One line of research has attempted to describe
expert systems, rather than social computing for consumers.
categories of social support behaviors, which can range
Of the small but growing body of literature on Internet-
from simple to more complex categorizations (see [20, 23-
based patient communities, researchers identified patient
25]). Some users are more likely to offer support whereas
expertise  and various types of support [7, 17-20] from
others are more likely to lurk [8, 14, 16]. While some social
interactions in discussion forums, or how collect patient
support research looks at the roles people have in providing
data could help medical research. What has not been
support (i.e. spouses, veteran patients), there lacks studies
studied as much are interactions exchanged on websites
looking into the relational dynamics of support exchanged
specifically geared towards communication between
from an online support group based on social network site.
individuals who have a relationship with each other, i.e.
blogs or a social network site. Further research to increase
Online vs. Face-to-Face support understanding of social interactions on this type of platform
Communication through the Internet allows people to be is needed since social networking is predicted to increase in
anonymous, use text-based messages, interact independent popularity in the future .
of time and place, and have many possibilities to expand
social network . Computer-mediated features can affect
how people compose messages, how they acquire and
Previous studies focused their research objectives on
maintain relationships, and even affect group formation
various issues: studying the strategies for soliciting support
. On the plus side, these online support groups give
; investigating various support types [7, 17-20];
people the sense of belongingness, and to learn how to
understanding the nature of shared patient expertise such as
behave and cope with situation they are in [6, 26]. On the
problems in coping with breast cancer and
downside, difficulties may result from lack of visual and
recommendations ; identifying types of group
aural cues found in traditional face-to-face communication
interactions  such as sharing personal experience,
[6, 11]. Issues of cyberstalking, e-patients leaving virtual
expression of gratitude, and offering congratulations can
trails, and assessing reliability of information are still of
facilitate social support exchanges among group members;
concern of the online environment. Traditionally, doctors or
and last in comparing online empathy with offline empathy
family would be first source of health information; however
. All the aforementioned studies used data from
the Internet opens up opportunities for people to get support
discussion boards rather than social network sites.
without effects of stigma.
This study focuses on the supportive interactions through categories – informational, emotional, instrumental –
communication functions of a social network site. It is proposed by . These concepts are appropriate for this
different from previous studies because it views study as it was used in similar studies [13-14, 17-18]. Next
communication medium as a tool in seeking support and the codes were tested on a small sample (n=10) to verify the
that its’ selection can have impact on interactions. applicability of definitions to alcoholism related messages
and modified as necessary. Frequencies of each code
RESEARCH QUESTIONS category were calculated to analyze the overall levels of
New social media technology shows a gap in research activity per support category (i.e. how many posts have
literature that studies interactions between e-patients. The each type of support?). We ignore typos and grammatical
research question that can be addressed at this time is, errors in messages. There may be instances where a support
“What is the impact of communication channels on type occurs multiple times in a message (i.e. two book
interactions where social support is exchanged across social referrals) the type is counted only once per message.
media (i.e. discussion forums, and journals)?” This question
could be explored more fully with more specific questions Coding Scheme
such as the following: There were three support types with sublevel concepts.
Messages were coded by sublevel concept then grouped
1. Do users select different communication tools for
into the top level category for comparing informational vs.
emotional supports. Instrumental support was not found in
2. What are patterns of supportive interactions across
this data and not reported.
3. What are the different supportive roles people perform Informational support in posts provide information (i.e.
while participating in their social network and how is it personal background information, describing certain
communicated? incidents, coping techniques, etc.) or request information
(i.e. advice, opinions, etc.) [14, 17-18, 23]. Subcategories
PRELIMINARY ANALYSIS include: advice, facts, personal experiences, information
This section discusses some preliminary research ideas and referral, and opinions.
a proposed approach to compare two data samples. Social Nurturant support in posts provides emotional expressions
support types were identified in an online alcoholism of caring or concern (i.e. alleviating feelings of guilt,
community for comparison between threads on a discussion empathy, etc.) or can implicitly ask for support (i.e.
forum (a public tool) vs. user journals (more personal). validation of problem or feelings, presence of others to
Preliminary results on the levels of social support identified avoid feeling alone, etc.) [17-18, 23-25] Subcategories
are reported. Knowing characteristics of social support include: esteem, network, and emotional.
offered and sought in these virtual groups will help us to Instrumental Support: provision of material or financial aid,
better understand the range of information needs (i.e. or services [14, 17-18, 23]. There are no examples available
advice) in a supportive electronic environment. from the dataset. An example is offering to drive someone
to Alcoholics Anonymous meeting.
MedHelp has a few communication tools for members to
use in conveying social support. The discussion forums are Results
publicly accessible by members and nonmembers alike, The first sample consists of forum posts (FP=81) and
where each thread is structured by an initial post and comments (FC=412), which totals to 493 messages. Forum
corresponding comments replied to the post. Users’ posts were created by patients themselves (n=56) or
journals follow the same structure – posts and comments – caretakers (n=14). 11 posts remain unidentified. The second
but privacy level can be set to private, friends only, or sample had 423 messages, composed of journal posts
everybody. Each user has the option to show activity on (JP=88) and comments (JC=335).
their profile page – i.e. new journal and forum posts,
Sample Forums Journals
whereas forum activity is all displayed on the forum page.
Size N = 493 N = 423
Posts FP = 81 JP = 88
Approach Comments FC = 412 JC = 335
The MedHelp alcoholism community was selected for this Figure 1. Sample Sizes
preliminary study. Data was obtained from the discussion
forum and the journals from members of the community The results from forum threads and journals are presented
using a web crawler on September 9th, 2009. Because first by support type offered and then by support type
emotional content is not currently recognizable with sought. Instrumental support was not found in either sample
automatic methods, a qualitative content analysis was used and thus not presented in this section.
to classify support types from three months time period. Support Offered
Concepts for coding social support types were developed Forum messages offered more informational support
first by reviewing related studies, their definitions and (84.7%) than nurturant support (58.6%). On the other hand,
examples. Concepts were grouped into three high-level
journal messages were more likely to have offered nurturant 13.6% journal posts sought information such as advice or
support (80.3%) than informational support (53.1%). 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
Informational Nurturant significantly less requested support. 8.35% sought
informational support such as clarification and a minimal
(n=81) FP 67 0.29% was looking for emotional support.
351 For both samples, forum users were more likely to
(n=412) FC 276 exchange information than any other type of support.
(n=88) JP 81 Journal posts were more likely to request emotional
65 support, and journal comments are likely to respond with
(n=335) JC 174 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
Figure 2. Offered Support the forum as a way to reach out to a greater network to ask
82.7% of forum posts provided informational support. For for opinions. Research on Yahoo! Answers portal shows a
instance, users often introduced themselves by describing large percentage of users asking for opinions, which may
how much they drink. Users were less likely to start threads indicate a need for advice on everyday decisions . It
offering nurturant support (16%) such as encouragement to seems that users choose each communication tool for
stay sober. Some messages offered both information and different purposes .
emotional support. Many comments (85.2%) offered
information such as updates on a situation or answering Suggested Research
questions in the posts, while a lesser majority (66.9%) In the subsequent phases of the preliminary study,
offered emotional support such as sympathy. investigations will be made to understand more about social
relations among users who exchange social support. Social
92.0% of journal posts provided some form of information psychology research explored issues relationship intimacy
and less likely to have an emotional nature (73.8%). 51.2% and trust [28-29] as a factor for exchanging social support.
of the comments offered some form of information in People have relationships in different contexts of shared
response to the journal post, whereas 82.0% of comments experience (i.e. work, family, book club)  and these
offered nurturant. relations may impact motives for participating in online
Forum users sought more informational support (24.9%) The concept of social network analysis (i.e. measuring
than emotional support (15%), and journal users sought closeness of two individuals, the strength of their tie, and
more emotional support (14.6%) than information (10.6%). 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
Informational Nurturant study of social support types with relational dynamics.
(n=81) FP 59
36 Contributions from research
… 64 In this study, we have compared the social supports in
26 forum and journal formats of MedHelp. The result in this
(n=88) JP 12 work can be useful in many ways: (1) providing more
32 insights to technological design factors and purpose behind
… 28 supportive communications, and (2) providing insights on
14 how online intervention program can be developed and
Figure 3. Requested Support
ISSUES FOR DISCUSSION AT CONSORTIUM
72.8% forum posts sought information (i.e. recommended It would be wonderful to have the opportunity to discuss the
drugs for treatment). A smaller 44.4% sought emotional pros and cons of this research direction that compares social
support. However, the comments had much less requested media communication functions. Here are some specific
support. 15.5% sought informational support such as questions: How to do further qualitative analysis and report
clarification of information and a minimal 6.3% were results in such a way that multiple samples can be
looking for emotional support such as validation. 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.)?
CONCLUSION Groups for People With Disabilities. Health Communication,
The increase of people searching for health information 1999. 11(2): p. 123 - 151.
online and using social media opens up a new door for 14. Chang, H.-J., Online Supportive Interactions: Using a
considering this technology for online intervention Network Approach to Examine Communication Patterns
Within a Psychosis Social Support Group in Taiwan. Journal
programs. This paper summarized research literature of the American Society for Information Science and
relating to the study online support groups. A preliminary Technology, 2009. 60(7): p. 1504-1518.
study was reported as an example of further research in the 15. Tanis, M., Online social support groups, in The Oxford
field. Some ideas for future studies were suggested as well handbook of Internet psychology, A.N. Joinson, K.
as their contributions. McKenna, and T. Postmes, Editors. 2007, Oxford University
Press. p. 139-153.
REFERENCES 16. Chuang, K. and C.C. Yang, Social Support in Online
1. Fox, S. and S. Jones, The Social Life of Health Information Healthcare Social Networking., in iConfeerence 2010. 2010:
Americans’ pursuit of health takes place within a widening Urbana-Champaign, IL.
network of both online and offline sources. 2009, Pew 17. Coursaris, C.K. and M. Liu, An analysis of social support
Internet & American Life Project. exchanges in online HIV/AIDS self-help groups. Computers
2. Kielstra, P., Doctor innovation: Shaking up the health system. in Human Behavior, 2009. 25(4): p. 911-918.
2009, Economist Intelligence Unit. 18. Eichhorn, K.C., Soliciting and Providing Social Support
3. Lindsay, S., et al., The health impact of an online heart Over the Internet: An Investigation of Online Eating
disease support group: a comparison of moderated versus Disorder Support Groups. Journal of Computer-Mediated
unmoderated support. Health Education Research, 2009. Communication, 2008. 14(1): p. 67-78.
24(4): p. 646-654. 19. McCormack, A., Individuals with eating disorders and the
4. Wantland, D.J., et al., The Effectiveness of Web-Based vs. use of online support groups as a form of social support.
Non-Web-Based Interventions: A Meta-Analysis of Computers, Informatics, Nursing: CIN, 2010. 28(1): p. 12-19.
Behavioral Change Outcomes. Journal of Medical Internet 20. Pfeil, U. and P. Zaphiris, Patterns of empathy in online
Research, 2004. 6(4): p. e40. communication, in SIGCHI conference on Human factors in
5. boyd, d. and N. Ellison, Social Network Sites: Definition, computing systems 2007: San Jose, CA. p. 919 - 928
History, and Scholarship. JCMC, 2007. 13 (1). 21. Eysenbach, G., Medicine 2.0: Social Networking,
6. White, M. and S.M. Dorman, Receiving social support Collaboration, Participation, Apomediation, and Openness.
online: implications for health education. Health Education Journal of Medical Internet Research, 2008. 10(3): p. e22.
Research, 2001. 16(6): p. 693-707. 22. Helgeson, V.S. and S. Cohen, Social Support and Adjustment
7. Civan, A. and W. Pratt, Threading Together Patient to Cancer: Reconciling Descriptive, Correlational, and
Expertise, in AMIA 2007 Symptosium Proceedings. 2007: Intervention Research. Health Psychology 1996. 15(2): p.
Chicago, IL. p. 140-144. 135-148.
8. Cunningham, J.A., T. van Mierlo, and R. Fournier, An online 23. Cutrona, C.E. and J.A. Suhr, Controllability of Stressful
support group for problem drinkers: AlcoholHelpCenter.net. Events and Satisfaction With Spouse Support Behaviors.
Patient Education and Counseling, 2008. 70(2): p. 193-198. Communication Research, 1992. 19(2): p. 154-174.
9. Høybye, M.T., C. Johansen, and T. Tjørnhøj-Thomsen, 24. Pfeil, U. and P. Zaphiris, Investigating social network
Online interaction. Effects of storytelling in an internet patterns within an empathic online community for older
breast cancer support group. Psycho-Oncology, 2005. 14(3): people. Comput. Hum. Behav., 2009. 25(5): p. 1139-1155.
p. 211-220. 25. Preece, J., Empathy online. Virtual Reality, 1999. 4(1): p. 74-
10. Leimeister, J.M., et al., Do virtual communities matter for the 84.
social support of patients?: Antecedents and effects of virtual 26. Agichtein, E., et al., Finding high-quality content in social
relationships in online communities. Information Technology media., in Proceedings of the international conference on
& People, 2008. 21(4): p. 350-374. Web search and web data mining. 2008.
11. Wright, K.B. and S.B. Bell, Health-related Support Groups 27. Chuang, K.Y. and C.C. Yang, Helping you to help me:
on the Internet: Linking Empirical Findings to Social Support Exploring Supportive Interaction in Online Health
and Computer-mediated Communication Theory. J Health Community, in ASIST 2010. 2010: Pittsburgh, PA.
Psychol, 2003. 8(1): p. 39-54. 28. Radin, P.M., "Hello, my friends": Social capital and
12. Ancker, J.S., et al., Peer-to-Peer Communication, Cancer transformations of trust in a grassroots breast cancer
Prevention, and the Internet. Journal of Health Website. 2001.
Communication: International Perspectives, 2009. 14(1 supp 29. Rau, P.-L.P., Q. Gao, and Y. Ding, Relationship between the
1): p. 38 - 46. level of intimacy and lurking in online social network
13. Braithwaite, D.O., V.R. Waldron, and J. Finn, services. Computers in Human Behavior, 2008. 24(6): p.
Communication of Social Support in Computer-Mediated 2757-2770.