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Learning about Social Technologies: Lorenzo's Oil Lessons

Posted By Gonzalo Bacigalupe, Friday, January 22, 2010
Updated: Friday, June 10, 2011

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 typewriter).

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

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