Many of my colleagues and dear friends are still trying to understand
what this whole social media buzz is about. They may not have a Twitter account
or may wonder how they could use LinkedIn.
Facebook still confuses or scares them.
They often ask me what is so fascinating about "this thing" with social
media tools. They wonder what else they could do with their recently acquired
iPhone besides making phone calls (check this brief
article to start). "What is in there and why investing my precious time?" With email I
have enough, they tell me.
For a long time, my temptation and initial response was to start
describing some of the social media tools-maybe show them some with my laptop
or smartphone. In a few minutes though, my colleagues would be looking at me in
the same way I sometimes watch an Apple Store adolescent "Genius" figuring out my hardware or software problem
in two swift mouse movements. Clearly, explaining the tool does not do the work
and in fact there are wonderful guides for beginners and more proficient users.
My responses have evolved and presently I am curious about what is
informing these comments and questions.
Instead, now I am trying to understand more and to engage in a
conversation about change and the difficulty we may have in imagining what this
all means. For instance, a few years ago, what was real and virtual had clear
boundaries: today, information technology developments make those boundaries
blurred. We are experiencing a breaking
down of the real and the virtual (i.e., Jordan, 2009). I may also talk
about some fascinating ongoing projects like PatientsLikeMe or new developments in monitoring health via mobile phones. I have accepted
the notion that even if one overcomes some of the skepticism and fear (at
times), there are still a lot of barriers for those who were educated without
computers and the internet (including me, someone who wrote his 300 pages
master thesis with an Underwood
A metaphor that has helped me lately is to ask people in these conversations to
think about the widely applauded film Lorenzo's Oil (George
Miller, 1992). Based on a true story of
the Odone family, the film tracks Augusto and Michaela's relentless search for
a cure of their son Lorenzo, a child diagnosed with a very rare disease (ALS).
We learn about the lack of collaboration and dismissal among doctors, support
groups, and scientists as the parents attempt to find a cure and provide
maximum hope for Lorenzo. The Odones were on their own and isolated, the
perfect plot for a Hollywood script: individuals overcoming the odds triumph.
In the mid 1980's, when communicating via computers was not even close to a
mainstream activity, primitive forms of social technologies were still only at
reach for a few. Even though the Odones found a scientist willing to work with
them, it was at a tremendous emotional, familial, and financial cost-something few
families could afford.
How would Odones's plight have been different if they had
had access to modern social media technology? How would have those events
played out in this decade? They could have joined many of the health social
networks available today to ask physicians questions, allowing for quick-second
consultation and cross-referencing (i.e., MedHelp or PatientsLikeMe). If they wanted
to advocate for policy changes or funding, they could have joined a health care
activist social network like WeGoHealth. They may have organized through a standard Facebook group or
an ad-hoc tailored Ning social network,
joined many of the rich health care communities in twitter, set up a blog, uploaded video and
photo updates via Flickr and/or YouTube.
Or they would have benefitted from a combination of these tools.
The revised story may not have made a great film plot, but
it would have elicited great resources and resilience, a richer collaborative
process that advanced their child's health care, advanced clinical research,
mobilized policy makers, and much more. Empowered patients, therefore, are not
anymore, patients who are just able to talk assertively to their doctors but
those who are positioned at the center of a network of collaborators. This is not easy but social media may have
made it more doable, not only for the Odones but for many other families who
may have been less resilient and resourceful.
The Odones and other families with a boy diagnosed with ALS
(it only affects boys) would not have to make much effort to find advice even
in mainstream media--check
for an example. Today, indeed, social media facilitates the fruitful
remembering of Lorenzo's life via the Myelin
Project. A project that aims at accelerating multinational research in a
collaboration that now includes the same clinical and research establishment
initially at odds when the Odones first began looking for a cure.
Twitter Update: Gene
therapy makes major stride in 'Lorenzo's Oil' disease