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addiction, sexually transmitted diseases, and genetic
disorders. Discussion of these subjects could result
in the individual being socially ostracized.
In sum, in Middle Eastern cultures, awareness of
healthcare privacy is of little concern. Healthcare
privacy is necessary when there are social
repercussions for sharing sensitive health
information, especially regarding sexual, genetic, or
addiction issues.
Advocates of the post-privacy movement agree
with these assertions and see social media as a
conduit for changing perceptions of healthcare
privacy. The post-privacy movement promotes the
individual’s freedom to share information with
others who share the same disease, values, or norms
(Heller, 2010). In a post-privacy world, a person
ostracized from their society can create an online
society that is more accepting and tolerant. The
individual is no longer bound by the norms of the
physical world; he or she is free to create virtual
societies with individuals who share the same goals,
views, values and challenges.
4 THE ROLE OF SOCIAL MEDIA
There has been recent growth in the use of social
media, especially online social networking, within
healthcare. One of the earliest studies on the use of
social media in healthcare examined the use of the
Bulletin Board System for nurses’ education (Russin
& Davis, 1990). The study found that the major
impediments to implementing such a system
included cost, maintenance, and the lack of
preparation for the technology in the nursing
profession.
With the current widespread use of the internet
and its relatively inexpensive bandwidth, social
media, particularly social networking, is beginning
to be used by healthcare professionals and patients.
In a commentary published by the Journal of the
American Medical Association, authors Shachak and
Jadad argue that the use of social networks will
eventually lead to a more people-centered healthcare
system that will improve communication and
information flow between patients, providers, and
administrators (2010). Other studies have shown that
users of Facebook seek health information online
(Househ, 2011). Websites for social networking,
such as Patients Like Me, are beginning to cater to
the need for social networks for health information
support.
There is a growing awareness within society
about patients’ engagement and empowerment in
taking control of their health. For example,
Sunnybrook Hospital in Canada has recently
provided its patients with full access to their
personal healthcare records (CBC, 2011). Google
Health and similar technologies empower patients to
manage their own health. Facebook provides a
platform for individuals to connect with others
suffering from the same disease or disorder. With
over 500 million users (Facebook, 2011), the
potential to connect with people suffering from the
same disease or disorder is higher on Facebook than
on any other social media networking site.
With the advent of social media, millions of
people seek and share health information online. As
Househ’s study revealed, individuals are creating
groups to share information relating to sensitive
health information, such as AIDS and cystic fibrosis
(2010).
In 2004, I conducted a research study on online
forums where people shared information on bipolar
disorders. I found that many people shared
psychological, spiritual, and relationship advice on
the internet. The online forums were anonymous,
and it was difficult to identify a person unless he or
she shared personal information, which did not
happen often. However, with the increasing use of
Facebook, people are beginning to share personal
health information online. This becomes an issue
when sensitive health information is shared, such as
information relating to sexually transmitted diseases,
addictions, and genetic disorders. Many people
create their own groups to discuss and share
information relating to various diseases, and they
openly reveal their identities. These individuals
create their own societies of people facing similar
health problems that cannot be discussed outside of
these online communities.
Thus, the concepts of privacy and confidentiality
are changing as a result of social media. People are
taking ownership of their own data and sharing this
information with others with similar characteristics.
There is currently no legislation to prevent
individuals from sharing their information. This is
the dilemma: governments have introduced privacy
legislation to limit the use of health information and
to protect the individual’s right to privacy, but with
the advent of social media, individuals are taking
ownership of their own health information and
sharing it with social networking and media groups.
With these changes in perceptions of privacy and
the use of health information, many questions arise
about the usefulness of privacy legislation. I suggest
that privacy legislation should be re-examined in the
wake of social media because this type of legislation
RE-EXAMINING PERCEPTIONS ON HEALTHCARE PRIVACY - Moving from a Punitive Model to an Awareness
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