The Public As Collaborator:

Crowdsourcing Models for Digital Research Initiatives

Introduction

As online social networking sites reach their golden age, people turn to them to both
actively seek and passively find information to enhance their individualized experiences.
People who have experiences that are uncommon in their real world communities can gain
benefits by turning to online communities to build weak ties and share information. Some
parents of children with special health care needs may be required to stay at home more to care
for their children, and online social networking sites and personal blogs may connect them to
others who share their experiences. Besides such physical isolation, it may not be as easy for
parents of children with disabilities to find parents with similar experiences in their real world
community, as only about six percent of the U.S. population have disabilities.

In order to study how parents of children with disabilities find information through
informal online social networks, the author conducted a review of the relevant literature such
a study must form a foundation on. The author located key findings in three areas of research:
literature on the information behavior and needs of parents of children with disabilities;
literature on the new frontier of online social network analysis and social media; and literature
on health-­‐related online support groups, whether those groups were formed by formal
organizations or blossomed organically. At the center of these overlapping areas lies the heart
of this study’s primary concern.
Body

Information Behavior and Needs of Parents

Parents want to learn from other parents. Adults without children may appear as less
trustworthy information sources due to their lack of personal experience and ability to verify
the accuracy of advice. Several studies confirm that parents of children with disabilities want
to hear from other parents of children with disabilities, making such like-­‐experienced
individuals more trustworthy sources of information and potentially rich sources for empathy.
Mackintosh’s 2005 study on the information sources of parents of children with autism found
that parents believed that the best sources were other parents, and that individuals with lower
incomes and socio-­‐economic status had fewer information resources. Mackintosh’s study
identified websites as a source of information but did not identify social media sites explicitly.
Statically published websites provide a controlled flow of information, whereas social media
sites provide a space for dynamic interaction and exchange of information in a many-­‐to-­‐
many forum. Mackintosh’s study also found misinformation was a concern of such parent-­‐
to-­‐ parent exchange of information, with no mediation from authoritative health information
professionals.

Pain (1999) found that personal communication is the preferred method for
information-­‐gathering parents of children with disabilities, with one parent stating, “There
was no substitute for real people, written information is nice to have as a comfort factor, but
you really get your information from people, talking face to face with them” (p. 303). Pain
concluded the purposes for information, regardless of source, were the following: “to enhance
management of the child,” where certain information improves working with the child on a
day-­‐to-­‐day basis (1999, p. 305); “to help parents cope emotionally,” where empathy from
other parents adds comfort to a diagnosis from an authoritative source; and “to access benefits
and services,” where information shared leads to new opportunities (1999, p. 308).

How do these preferences transform in a world where more and more personal
communication becomes computer-­‐mediated? Huber et al. (2005) and Tillisch (2007) both
found the Internet cited as the most common information source for parents of children with
disabilities. Tillisch’s survey of 1,000 parents found support groups rivaled the Internet for
most-­‐used sources of information, with Huber adding that information seeking is greatest at
the time of diagnosis. Personal communication through online social networking may be the
next fruitful place to study information behavior of parents of children with special health care
needs.

Analyzing Computer--Mediated Online Social Networks

As more parents seek information online to help them manage day-­‐to-­‐day needs of
their child with disabilities, cope emotionally, and find services, the scale of computer-­‐
mediated communication and information is growing rapidly. No longer does the computer-­‐
mediated role of information provider rest squarely on the bandwidth of static, one-­‐way
communicating websites. With the birth of a new genre, Web 2.0 and social media, online
social networking sites such as Twitter (launched 2006) and Facebook (launched 2004 and
opening to the public in 2006) have spurred computer-­‐mediated communication and
information sharing into a new era. Facebook has more than 845 million user accounts
(Protalinski, 2012), and Twitter has more than 300 million user accounts (Taylor, 2011). The
people behind those accounts may not all be active users, but the data amassing on social media
servers is enough for the Library of Congress to enter into an agreement with Twitter executives
to create an archive of all public tweets (Raymond, 2010). Such is the value of that publicly
contributed data—a status update being a unit of data—to the future of research. Researchers
have already begun to conduct empirical studies on the large-­‐scale datasets these online social
networking sites can provide. Dodds et al. (2011) used more than 46 billion words comprising
roughly five percent of tweets posted between September 9, 2008, and September 18, 2011, to
determine the happiest days of the seven-­‐day week were Friday through Sunday, the happiest
hour, between 5 and 6 a.m.

Researchers of social networks are also turning their attention to the data available on
social media sites. Huberman et al. (2009) cautions that counting the mere number of friends
and followers does not give an accurate portrayal of influence, a much-­‐debated term among
online social networking researchers. Huberman et al. believes networks hidden among
networks can be found by studying who talks to whom, a metric not easily discoverable through
public profiles alone. Burgess (2009) argues that online social networks can be leveraged to
empower women in learning environments, emphasizing that networking function—linking
people together—to build social capital that facilitates access to information and resources.
Burgess warns against believing online networks escape established privilege structures,
cautioning those wanting to turn to a digital environment to be mindful of how power reinvents
itself online.

Scholars researching information behavior and cultural communication patterns find

the data embedded in online social networking sites to be rich and informative, as well. Lerman
and Ghosh’s study (2010) tracked how information spreads through Twitter and Digg. Digg, a
user--‐submitted news aggregator, became the “denser” platform for these researchers due to
the ease of tracking comments and measuring popularity of submissions. Digg users vote on
stories by clicking a thumbs-­‐up icon or thumbs-­‐down icon so visitors to the website can see
how each submission ranks in popularity. Lerman and Ghosh found that network structure
affects the dynamics of how the information flows from one person to the next. Digg makes
following the popularity of posts on the Wild West of Twitter seem like herding and wrangling
cats.

But those retweets can be wrangled. boyd et al. (2010) argue retweeting— where a post
by one Twitter user is seen by another Twitter user and reposted to the latter user’s profile—
can be studied as a conversational practice. The researchers found that Twitter users retweet
posts for specific purposes. The retweet shows engagement in a conversation and shares
information among the listeners. A retweet in and of itself sends the message that the user is
listening. boyd et al. found the other two purposes for retweeting a post are to indicate
agreement publicly (or publicly to one’s approved list of followers if that user has a private
account) and to validate others’ thoughts. This study of retweeting as a conversational practice
demonstrates that attribution, relationship-­‐building, and community appreciation are
important aspects of participating in online social networks.

Chen (2011) came to a similar conclusion that retweeting acts to mediate relationships
on Twitter. Chen found that the more hours users spent on Twitter, the greater the need those
users had to connect with others. Chen confirmed this need for “we-­‐ness” by participants in
online social networks, and that the more active users were, the more likely they were to also
feel connected. Chen’s study focused on uses and gratification theory (U&G) to explore Twitter
users’ need to connect with others. Psychological needs direct communication goals, according
to Chen’s explanation of U&G theory, which requires purposeful decisions on participating
with communication media. Chen states (2011, p. 757), U&G focuses on social and
psychological needs, which generate expectations that lead to different patterns of media use
to gratify these needs (Katz et al., 1974). It is important to note that Internet communication
has in some ways nullified the traditional sender-­‐ receiver model, which makes using U&G
even more relevant to online media (Ko, 2000). People online can choose what media they
want to use (Singer, 1998) with a simple click of the mouse. They can both send and receive
messages simultaneously through media such as Twitter.