Social
networks such as Facebook and YouTube include many disease specific communities.
Members may find valuable emotional support
and encouragement for managing their illnesses in these communities. However, questions about the reliability of
information in social communities have been raised in addition to concerns
about patient privacy. Until issues of
credibility and privacy in social communities are addressed, social networks
may fail to realize their full value to patients, physicians and health care
marketers.
All health
care social communities are not created equally
In
evaluating healthcare social networks, researchers have found a wide range of
variability when it comes to authenticity, privacy, clinical oversight and
accuracy. The highlights of some
selected studies include the following findings:
- A review of 100 YouTube videos on inflammatory bowel disease by researchers at the Cleveland Clinic Foundation rated the overall educational quality as poor.
- Researchers at Brigham and Women’s Hospital, Harvard University and CVS Caremark surveyed the 15 largest social media sites dedicated to diabetes. The results of the survey were published in Archives of Internal Medicine. (1) Researchers found varying levels of oversight regarding the clinical information provided:
5 sites (33%) had physicians available to answer questions
but only 7% of postings included a physician response
8 sites (53%) used diabetes educators to answer questions
2 sites (13%) did not appear to monitor information posted;
one of these sites has over 300,000 members
3 sites had no industry sponsorship; two of those without sponsorship
had neither a physician nor a diabetes educator available to answer
questions.
- Another review of Facebook sites for diabetics found that more than 25% of posts directed members to products not approved by the FDA. The researchers also noted significant attempts to collect personal information from participants.
Is the
Facebook exodus by pharma making things worse?
With its
clinical expertise, the pharmaceutical industry can clearly help play a role in
the credibility gap of disease specific social networks. However, lack of guidance from the FDA,
concerns about adverse event reporting and the elimination of the ability to
moderate comments has caused many pharma
firms to leave sites like Facebook.
According to the Dose
of Digital Pharma and Healthcare Social Media Wiki, 23 of 85 (27%) of
industry sponsored Facebook pages have been removed. Yet the exodus of pharma from Facebook may be
exacerbating the credibility gap.
In his blog, Eye
on FDA, Mark Senak, a lawyer at the
international communications firm Fleishman-Hillard noted , “the lack of
guidance from the FDA on social media doesn’t just affect the marketing and
education by medical product manufacturers but rather, has the potential to
cause harm when patients or caregivers rely on third party generated material
such as a Wiki, that might be incorrect. It’s not about marketing, it’s
about public health.”
Privacy
concerns persist
Even with
clearer regulatory guidance and greater participation from pharma, concerns
about patient privacy may limit the usefulness of social networks in health
care. In a national survey of patients, the
Path
of the Blue Eye Project found that 68% of Facebook users have not and would
not share their personal health information on the site. Additionally 39% of non-sharers indicated
concerns about posting health information that could be found by others.
Can curation,
reputation and facilitation help?
In response
to the issues of credibility and privacy, some firms and organizations are
stepping in to vet existing social health communities or create more secure and
reputable ones. Some examples include:
Webicina:
Content curation is the process by which an organization or individual
reviews and filters the online content to create an edited list of resources
for a specific audience and purpose. Founded
by physician Bertalan Mesko, the goal of Webicina is to provide curated medical
social media resources in over 80 medical topics and over 17 languages. Webicina publishes curated social media
collections on specific diseases such as Diabetes 2.0 or Neurology 2.0 ,
including blogs, community sites, podcasts or Youtube channels and others. These curated resources, reviewed by members
of Webicina’s advisory board, are targeted at both patients and
physicians.
Mayo Clinic Online Community: Since
the Mayo Clinic has been a leader in the adoption of social media in health
care it seems logical that it would capitalize on its social media expertise as
well as its clinical reputation to build one of the first patient communities
created by a medical provider. The
online community is open to anyone; however, participants must create a profile
and login password. Members have access
to videos, discussion forums, news articles and blog posts. They can also “friend” other community
members with similar health interests.
One of the key features of the community is the ability of members to
control the privacy of the information shared.
While search engines can scan topics posted in the discussion boards,
the identity of individual members is not disclosed.
Drs. Pamela Hartzbrand and Jerome Groopman noted in a 2010 New England Journal of Medicine article, that the Internet offers patients unlimited amounts of information. However, they also cautioned that "falsehoods are easily and rapidly propagated" as well. To make the best use of the wealth of information available, patients and physicians should work together rather than independently to identify reputable and secure social communities to manage patient health most effectively and safely.
Do you have examples of online health communities that have successfully addressed privacy and credibility issues?
(1)
Shrank, William,
et al. "Variations in Structure and Content of Online Social Networks for
Patients with Diabetes." Archives of Internal Medicine 26 September
2011: 1589-1591.
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