The Need for Medical Professionals to Join Patients in the
Online Health Social Media Discourse
Hamman Samuel
, Fahim Hassan
and Osmar Za
Department of Computing Science, University of Alberta, Edmonton, Canada
School of Public Health, University of Alberta, Edmonton, Canada
Health Social Media, Trust, Misinformation, Privacy, Anonymity, COVID-19, Infodemic.
Health social media is frequently used by e-patients for seeking health information online for self-diagnosis,
self-treatment, and self-education. Health social media also provides various benefits for patients and layper-
sons, such as allowing users to be part of virtual support groups, having quick access to advice, and the conve-
nience of access via the Internet. At the same time, it raises concerns about misinformation being propagated
by laypersons without professional medical expertise, especially during pandemics like COVID-19, leading
to an infodemic. There are only a handful of health social media websites that allow medical professionals to
participate in discussions with patients online. We postulate that the modern face of medicine and healthcare
needs medical professionals to be included in the online patient discourse so misinformation can be addressed
early on and head on. To this end, we propose a new and free health social network named Cardea that is
under development which aims to bring patients, laypersons, and medical professionals together on the world
wide web. Users can share experiences, ask questions, and get answers in three streamlined environments:
Patient to Patient (P2P), Patient to Medic (P2M), and Medic to Medic (M2M). While there are several forums
that cater specifically to patient-patient discussions or medic-medic connections, Cardea’s added value is in
providing a unified portal for both patients and medics, as well as enabling interactions between patients and
medics. Moreover, Cardea applies machine learning, information retrieval, and natural language processing
methods to promote credible health information and demote misinformation. At the same time, with enhanced
veracity, anonymity, and privacy controls, the vision of Cardea is for e-patients to confidently share experi-
ences and opinions without being stigmatized or compromising their right to privacy. Our hope is to generate
discussion and gather insights from other researchers on developing Cardea.
The Internet originally allowed a few people to gen-
erate content on websites. With the advent of social
media, anyone with access to the Internet was able to
have their say and generate content. Laypersons and
patients have used this opportunity to interact, col-
laborate, and share their personal health stories, ad-
vise, and opinions on Health Social Media (HSM).
However, this has led to varying degree of misinfor-
mation being propagated online, with severity rang-
ing from acute to chronic, depending on the nature of
the topics being discussed (Oliphant, 2009). Early on,
there were signs of the severity of this problem when
websites that promoted harmful cures for cancer us-
ing apricot pits were widely being read, despite being
banned by the U.S. Food and Drug Administration
(FDA) due to pits containing cyanide that would be
harmful when consumed in large doses. Also not too
long ago, the impact of health misinformation was felt
once more as anti-vaccination campaigns started af-
ter viral posts on Facebook linked autism and measles
vaccines (Nyhan et al., 2014). We are currently living
through the COVID-19 pandemic which has turned
into a full-blown infodemic with severe consequences
for misinformation being spread online about vari-
ous facets of the disease including origins, causes,
symptoms, prevention, and cures (Ferrara, 2020). In
the face of this new reality, laypersons crucially need
trusted information in HSM discourse.
Medical professionals have been using HSM as
well, albeit to a more limited extent. A few web-
sites enable medical professionals, such as doctors
and nurses, to consult with patients via video con-
ferencing or phone call. For instance, My Health
Alberta’s 811 HealthLink service
allows patients
Samuel, H., Hassan, F. and Zaíane, O.
The Need for Medical Professionals to Join Patients in the Online Health Social Media Discourse.
DOI: 10.5220/0010325806370644
In Proceedings of the 14th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2021) - Volume 5: HEALTHINF, pages 637-644
ISBN: 978-989-758-490-9
2021 by SCITEPRESS Science and Technology Publications, Lda. All rights reserved
or caregivers to connect with registered nurses via
phone call to discuss or ask questions on non-severe
health issues (Sharun, 2012). Other paid telemedicine
services, such as Dialogue, offer virtual healthcare
services through web chat and video conferenc-
ing (Shecter, 2017). It has also become common for
healthcare organizations to have social media pres-
ence for brand recognition. Some websites are ded-
icated to enabling medical professionals exchange in-
formation with each other, such as DocCheck
. Other
forums like Doctors Lounge
enable patients to ask
questions of medical professionals.
The challenges of medical professionals dedicat-
ing time to HSM are understandable. With limited
human resources and busy schedules, it is not al-
ways feasible to engage patients online. However, it
is equally important to acknowledge that a new type
of patients, termed as an e-patients, are seeking self-
education for self-diagnosis and self-treatment on-
line (Fox, 2008). These e-patients seek information
about their health online and feel comfortable inter-
acting with health professionals online as well via
telemedicine. Getting involved in the online discourse
would be beneficial at multiple levels of public health
and medical practice. Patients and laypersons who
resort to unproven cures often do so out of desper-
ation and lack of engagement and advise. Medical
professionals can remedy this situation by authorita-
tively clarifying misinformation and also understand-
ing latent needs of patients, essentially giving rise,
credence, and popularity to e-medics. There is defi-
nitely growing awareness on the importance of know-
ing and being prepared for e-patients as part of medi-
cal education (Masters, 2017), but this may fall short
of expectations until medical professionals meet e-
patients where they are: online on the Internet.
Towards this goal of functional health literacy, the
vision of Cardea is to build a free-to-use HSM portal
that is suitable and attractive for medical profession-
als as well as patients and laypersons. At the core of
Cardea is the metaphor of the hospital building, rep-
resented in the online environment. A hospital has
different rooms, some are public and some are pri-
vate, some are meant for doctors or nurses only, oth-
ers for patients, and others for interactions between
doctors, nurses and patients. Similarly, Cardea pro-
vides Patient to Patient (P2P) secure online pages
where laypersons can interact exclusively with other
patients. Medical professionals can interact with pa-
tients in the Patient to Medic (P2M) online web pages,
while medical professionals can engage in private dis-
course on the Medic to Medic (M2M) pages. The in-
Doctors Lounge
teractions follow the traditional HSM format of asyn-
chronous textual conversations. Additionally, patients
and medics are able to chat synchronously in real
time via online chat on the P2M web pages. All dis-
cussions are indexed and grouped by health topics,
hence patients can join these virtual support groups
to get information by health topic. There are several
forums that cater specifically to only patient-patient
discussions, such as Patients Like Me, Doctissimo,
WebMD, Health Boards, Medical Sciences Stack Ex-
change, to mention a few. There are also some forums
that are meant for medic-medic connections, such as
the defunct BMJ’s Doc2Doc forums, and the afore-
mentioned DocCheck. Cardea’s added value is in pro-
viding a unified portal for both patients and medics.
In this paper, we present the functional design
of Cardea
and showcase how the needs of various
health and medical stakeholders can be served with
ease. In addition, we discuss how HSM can use ma-
chine learning, information retrieval, and natural lan-
guage processing to support information credibility,
right to privacy, and personal information security.
2.1 Fighting Misinformation
There are various definitions of trust among users, and
it is often used interchangeably with reliability and
credibility, but the general consensus is that trust in-
volves a willing interaction between two or more en-
tities. There is an implicit belief that the interaction
will at least be self-beneficial in the worst case, and
mutually beneficial to all entities involved in the best
case (Golbeck, 2005). There is no guarantee that this
belief is correct. Nevertheless, some level of trust,
however minuscule, is fundamentally essential for in-
teractions to happen, even when given limited or non-
existent knowledge about another entity or group of
entities. Despite the popularity of HSM and an im-
plicit sense of trustworthiness between users, untested
claims for cures, lack of contraindications, and false
claims about disease prevention are common features,
having life-threatening potential.
Social networks have presented enormous oppor-
tunities to connect across the world, but also inad-
vertently have allowed the rampant propagation of in-
accurate information, rumours, propaganda and con-
spiracy theories. Recently, the term “infodemic” has
Source code
HEALTHINF 2021 - 14th International Conference on Health Informatics
gained popular attention as an umbrella term to re-
fer various types of inaccurate information related to
COVID-19 (Wang et al., 2019; Zarocostas, 2020).
Conjoining “information” and “epidemic”, this port-
manteau word uses disease or illness as a metaphor
and illustrates the pervasiveness of health misinfor-
mation. HSM like Cardea can help medical profes-
sionals to have a nuanced understanding of the detec-
tion and spread of health misinformation and to de-
sign effective intervention strategies against them.
Understanding human behaviours is a precursor
to design and implement such interventions. HSM
like Cardea therefore provide a unique opportunity to
closely examine the circumstances of infodemics and
to strategically design interventions that can go be-
yond simply raising awareness. Organic interaction
between patients and medical professionals can act
as a foundation for a comprehensive understanding of
how human behaviours are impacted by the infodemic
at a different individual, organizational, and commu-
nity level. This perspective can also help to explore
the different factors associated with a multi-faceted
problem like an infodemic.
Moreover, patients interacting with medical pro-
fessionals provides the laypersons with an authorita-
tive source of knowledge to gravitate towards when
dealing with actors who want to spread misinforma-
tion. The prevalent strategy in measuring information
quality in HSM presently is consensus-based “wis-
dom of the crowd” methods such as votes and likes.
When only patients and laypersons are interacting
with each other, these subjective metrics could easily
lead to creation of echo chambers. With medical pro-
fessionals getting involved in appraising online con-
tent through interactions on HSM, this also opens up
possibilities for objective trust metrics that are based
on machine learning models trained on the votes and
feedback of medical professionals.
2.2 Preventing Stigmatization
In addition to physical accessibility, there are various
cultural, social and psychological barriers to health
seeking behaviors (Stangl et al., 2019). Certain health
conditions and diseases, particularly related to addic-
tion, mental health, or sexually transmitted infections,
have social stigma associated with them. Stigmati-
zation of these health conditions often result in de-
lay in care and over-reliance on treatment based on
online research which can ultimately lead to possi-
ble harmful consequences, reinforce misinformation,
and overall poor health outcome of patients (Hatzen-
buehler et al., 2013). Even though there are sev-
eral health promotion initiatives on raising awareness,
the current healthcare system is primarily based on
an intervention-focused model which relies on self-
reports and does not account for public perception,
social norms, and other individual or social determi-
nants that influence both individual and population
health (Stangl et al., 2019).
HSM can mitigate the harmful consequences of
health-related stigma on both communicable and non-
communicable diseases. Peer networks and online
support circles can normalize reaching out for help
on health conditions which are perceived negatively
in our society. Moreover, such online platforms can
enhance the role of physicians and other healthcare
professionals as advocates of healthy lifestyles which
will facilitate a more prevention-based health mea-
sure (Luft, 2017).
At the same time, the personal identity of HSM
users usually needs to be hidden to avoid social
stigmatization online. Typically, the author of a post-
ing on a social media website is identifiable by their
registered user name or full name being displayed
next to the post. However, situations can arise in
which the user does not want to be identified at all.
For instance, if a user were to share a link with their
friends about sexual dysfunction or infertility, the user
may wish to do so anonymously to avoid any stigma-
tization resulting from the assumption that sharer suf-
fers from the condition. Despite the potential sever-
ity of online social stigma, options and controls to
anonymously post content are not well-supported in
most social media websites. Users on these web-
sites may hide their real identity by creating a new
account with a fake name or pseudonym, thereby du-
plicating the website’s user base. This is not ideal and
unnecessarily complicates the process of information
sharing. From the list of popular social media web-
sites such as Facebook, Twitter, LinkedIn, YouTube,
Stack Exchange and Quora, only the latter allows ask-
ing questions anonymously without needing to create
a new account. There are also potential drawbacks
with the approach to replace the user’s real identity
with the generic pseudonym “anonymous”. Firstly,
despite their name being hidden, users still may be
inadvertently revealing their identity because of the
similarities between the content they have posted in
the past. Phrases, wordings, topics and other nuances
about the writing style in the user’s past postings may
constitute a quasi-identifier that can be associated
with a specific user. Quasi-identifiers are not unique
by themselves but can be correlated with an user’s
identity due to frequency of occurrence or other pat-
terns (Sweeney, 2000). Secondly, the generic anony-
mous pseudonym also eliminates the user’s associated
reputation, motivating the need for trust-preservation
The Need for Medical Professionals to Join Patients in the Online Health Social Media Discourse
Figure 1: Cardea homepage (screenshot from web application); 1 - Forums and support group folksonomies; 2 - Content
types; 3 - Authorship settings; 4 - Privacy controls.
during anonymization. Cardea addresses these issues
and enables free online discourse among patients and
medical professionals without fear of stigmatization.
2.3 Privacy Preservation
HSM offer insightful behavioural data which can im-
prove overall access to healthcare and can be used for
evidence-based policy-making (George et al., 2013).
However, for a successful implementation of such
networks, there are various factors that need critical
considerations, such as ensuring user privacy, ethical
use of technology, and understanding challenges and
limitations of the network (Grajales III et al., 2014).
Cardea generalizes the various viewpoints of pri-
vacy observed in HSM into two broad categories of
content visibility and user identity. Users are given
full control of who can see the content that is being
posted. Moreover, users also have control over their
how their identity is associated with the content they
post. Identity privacy is often not considered in HSM
and can lead to unwanted online social stigmatization.
A third category covers the need for analysis of
user-generated content for research purposes. To fa-
cilitate this while preserve the user’s right to privacy,
only aggregated content analysis will be supported af-
ter filtering Personally-Identifiable Information (PII).
All Cardea users are required to consider the use of
HSM in the context of permission, privacy, informed
consent, security and the broader social impact. Fu-
ture extension and application of Cardea can be fur-
ther aligned with the existing legislation and regula-
tions on personal information protection and the ex-
change of electronic information.
Cardea aims to address the various challenges out-
lined with trust, stigmatization, and privacy. From
a research perspective, Cardea has been conceptual-
ized as a sandbox for facilitating and understanding
HSM interactions. The Cardea homepage
is shown
in Figure 1 while various other features outlined in
this section are summarized in Figure 2.
3.1 User Types
Cardea allows two user roles: Patient or Medic. The
patient is a generic label for anyone who would be
seeking health information, while the medic label is
for identifying medical professionals. In addition, a
select group of users are assigned as Moderators for
housekeeping and administrative tasks related to the
website and content. Medics are manually verified
based on their institutional email and correspondence
with their organizations to ensure good standing. Un-
accredited users are assigned the patient role by de-
fault until verified.
Alpha version of Cardea demo website available on https:
HEALTHINF 2021 - 14th International Conference on Health Informatics
Figure 2: Cardea features showcase (screenshot from web application); 1 - Search and exploration; 2 - Content sorting (default
by trust); 3 - External information integration and recommendation.
3.2 Content Types
Cardea allows registered users to post text or hyper-
links to websites, images, and videos. Content is
created within three categories: Questions, Discus-
sions, and Blogs. Questions are focused on getting
answers, while discussions are more open-ended con-
versations. Blogs provide an avenue for users to cu-
rate opinion pieces. Additionally, replies allow other
users to be able to respond, leading to conversation
threads. Replies to discussions and blog posts are re-
ferred to as Comments, while replies to questions con-
stitute Answers. A fourth content category of Chats
between medics and patients is also provided only
within the P2M forum.
3.3 Folksonomies
A folksonomy is a methodology for allowing users to
tag items, whereby the tags can be automatically orga-
nized as a classification system based on tag frequen-
cies (Morrison, 2007). In Cardea, content is tagged
by Forums and Support Groups. There are 3 forums
based the metaphor of a hospital building for special-
ized and segregated online conversations: Patient to
Patient (P2P), Patient to Medic (P2M), and Medic to
Medic (M2M). The P2P forum allows only patients
to create new content, while the P2M forum allows
patients and medics to interact. The M2M forum is
meant exclusively for medics only. Depending on the
privacy settings, the content itself within the forums
may be visible to other members, but the ability to
create new content is restricted based on user types
associated with the forums. Support groups consti-
tute specific health-related topics that allow grouping
of questions, discussions, and blogs topically.
3.4 Privacy Controls
Users can specify who can view their content using
four levels of privacy, from broadest visibility to more
limited viewership: Public, Registered, Medics / Pa-
tients, and Connections. At the first level, content can
be shared publicly and viewed by all visitors to the
website without needing an account. The next level
of privacy restricts content viewing only to users who
have registered on the website. Thirdly, the type of
user and the forum being browsed dictates viewer-
ship, either medic or patient. At the fourth level, users
can opt to share the content only with other users that
they have explicitly added as connections. Connec-
tions are required to accept requests, hence a connec-
tion is a two-way virtual relationship between users.
3.5 Authorship Settings
In addition to privacy control for visibility of con-
tent, users are also able to determine how their iden-
tity is displayed and associated with their own con-
tent. Three options are provided to label author-
ship: Myself, Pseudonym, or Anonymous. For the
first option, the user’s registered name is shown
The Need for Medical Professionals to Join Patients in the Online Health Social Media Discourse
for authorship. For the second option, a trust-
preserving pseudonym will be automatically assigned
to the user. The pseudonym is assigned using a
two-stage approach outlined in the Iron Mask algo-
rithm (Samuel and Za
ıane, 2017): firstly, the content
to be posted is scrutinized to determine the probabil-
ity of de-anonymization using machine learning and
the whiteprint identification approach (Keretna et al.,
2013) on the user’s prior historical content.
Whiteprint is defined as the unique writing
style of an author based on grammatical and lexi-
cal patterns (Kayarkar and Ricchariaya, 2014; Ma-
sood et al., 2019). This approach enhances
anonymity by minimizing the risk of re-identification
or de-anonymization. If there is no risk of de-
anonymization, then the user’s authorship label dis-
played to the user’s connections is “Your Connec-
tion”. This allows other connections to associate
some level of trustworthiness with this user, even
though their actual identity is hidden. For all other
users, the user’s type is displayed, either medic or
patient. The last option is to show the generic label
Anonymous” as the author.
3.6 Trust Metrics
The veracity of content is established within Cardea
using subjective and objective metrics. Cardea allows
users to provide subjective feedback on the quality of
content by reacting with Likes or Dislikes. These spe-
cific reactions are limited to questions, discussions,
blogs, and comments. Answers to questions can be
Up-Voted or Down-Voted to reflect the extent to which
the answer addressed the original question, in addi-
tion to quality and correctness.
Objective metrics enable credible content to be
surfaced using established medical knowledge. This
is achieved by processing content containing medical
claims through MedFact (Samuel and Zaiane, 2018),
which uses automated information retrieval process
with natural language processing and machine learn-
ing to compare the claims against known facts ex-
tracted from publications in reputed medical journals.
At the end, a percentage score is calculated to repre-
sent Agreement of claims with known medical facts.
In addition, votes and likes by verified medics are
given more weight when scoring content quality and
ranking search results. Additionally, Cardea’s user
reputation system keeps track of positive and negative
feedback received on users’ content. Reputations are
displayed to other users, contextualized by topic. For
instance, a user may receive good feedback on topics
related to pediatrics, but negative feedback on other
3.7 Search and Recommender Results
Cardea provides standard search mechanisms, while
also allowing faceted filtering within results by con-
tent topic and type. In addition, exploratory search
is available whereby new content can be discovered
from search results by displaying related concepts to
the user’s currently viewed content. For exploratory
search, Cardea incorporates BubbleNet (Mohajeri
et al., 2016), which presents an abstract and high-level
representation of major concepts, keywords, and top-
ics discussed in a set of conversation threads. The
relationships are visualized in the form of a network,
showing the topics as well as their inter-connections.
This network is built using an estimation of semantic
relationships between topics. The user then can navi-
gate through this network by either refining or expan-
sion. The user can drill down from a given topic to see
other related concepts in a lower and more detailed
level. The user can also navigate to other related top-
ics and finally find a set of documents talking about
their desired topics. This interface is shown in Fig-
ure 2 alongside other features.
Cardea facilitates discussions by recommending
external content that is relevant to existing conver-
sations, including real-time chats between patients
and medics using PubMedReco, a real-time recom-
mender to suggest citations from PubMed (Samuel
and Za
ıane, 2017). PubMedReco analyzes keywords
within synchronous chats to form search queries for
retrieving PubMed citations. The same approach is
applied to asynchronous conversations for suggesting
articles from Health Canada. Users can then directly
discuss these news items within Cardea.
The COVID-19 pandemic has revealed the widening
gap between health experts and the general public
in terms of following appropriate public health mea-
sures. To understand such gaps, it is important to criti-
cally examine the communication process itself: how
people seek health information, share their concerns
with medical professionals, interpret new information
or suggestions and follow the medical guidelines. The
current literature in public health and behavioral sci-
ence show how making decisions on personal health
is a subjective process embedded into personal expe-
rience, prior knowledge, cultural norms, and social
and physical environment (Glanz and Bishop, 2010).
In the absence of proper communication between e-
patients and medical professionals, laypersons can of-
ten be persuaded by anecdotal evidence and make cru-
HEALTHINF 2021 - 14th International Conference on Health Informatics
cial decisions based on prior belief or online misinfor-
mation (Swire-Thompson and Lazer, 2020).
On the other hand, there are various challenges
concerning patient-medic online interactions, such as
lack of financial incentives for medics, regulations on
patient personal data transmission, and insurance cov-
erage on online telemedicine services. Current litera-
ture on health equity has also highlighted the fact that
although modern technology has increased the overall
accessibility of information, it is still far from ideal
and has inadvertently created a digital divide (Mul-
langi et al., 2019). What is even more concerning is
that people’s access to information now depends on
their online activities.
Search engines and social media influence peo-
ple’s information seeking behaviour and customize
results based on their online interaction (Mowshowitz
and Kawaguchi, 2002). Such selective exposure to in-
formation eventually creates “echo chambers” or dis-
jointed bubbles between experts and the public (Choi
et al., 2020). For example, Getman and colleagues
studied the network of online discussions on vacci-
nation and empirically proved the limited or rare in-
teractions between the experts and vaccine-hesitant or
anti-vaccination groups (Getman et al., 2018). These
gaps are further exacerbated by the spread of health
misinformation such as conspiracy theories of dis-
ease origins, amplified risks and false claims on health
benefits. General social media platforms and other
pseudo-scientific websites are inadvertently becom-
ing hosts of such inaccurate information posted and
propagated by conspiracy theorists, political parties,
celebrities or autonomous programs (bots) (Vosoughi
et al., 2018). The convoluted online space makes it
difficult for the public to track the source of news and
evaluate its credibility (Bridgman et al., 2020).
There is a perceived notion that these divides
emerge from the lack of education or informa-
tion (Mackert et al., 2016). While that might be true
to some degree, we argue that such divides are rooted
in more systemic issues within the practice of science
itself. Historically, health research, or the scholarship
of science as a whole, has been conducted in isolation
with limited engagement between researchers and the
public (Eagle et al., 2003). New discoveries are of-
ten confined in academic circles or specific interest
groups. Timely access to health information based on
new discoveries of drugs or treatment is a major chal-
lenge for patients, particularly those in rural areas.
HSM can play a bridging role and address these chal-
lenges in various ways, but more specifically, by
empowering both medical professionals and patients
through inclusive online communication research; ad-
dressing health misinformation, creating a safe space
to discuss sensitive health issues; and improving the
overall access to healthcare. Grounding the health
communication process in equity, inclusion and im-
pact, such online networks can also help promote a
more user-centred design of technology as well as its
effective application to improve overall public health.
Additionally, through active participation in HSM,
medical professionals can gain valuable insights on
patient perspective and perception on emerging dis-
eases. Similarly, patients and caregivers can connect
with their peers and engage in knowledge exchange
which may lead to an increase in their awareness and
adherence to health guidelines. In this position paper,
we presented our ongoing development work on the
Cardea Health Social Network with various features
for trust-enforcement and privacy-preservation. The
ultimate goal of Cardea is to create an attractive en-
vironment for medical professionals to fully engage
with e-patients in online discourse as e-medics. From
a research perspective, our hope is to gather feedback
and generate discussion for enhancing Cardea.
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