Not many sites do as good a job at marketing their back catalog content as TED does. The editors there just seem to know when one of their videos of presentations is timely again. Jamie Heywood discusses the inspiration behind PatientsLikeMe.com, an online health community community with a purpose — learn more about living with diseases through massive aggregation of personal experiences.
PatientsLikeMe doesn’t try to be the support community that you might find in the discussion forums at American Cancer Society’s cancer.org, which are important. Heywood’s community primarily focuses on gaining insights into living with diseases based on the collection almost everything that happens to those affected people, documented by patients themselves or their loved ones. Heywood is not without his detractors in the medical world, especially those that would challenge the scientific rigor of conclusions the site’s data could lead one to. Privacy experts also take issue with this extent of personal data being exposed widely.
Meanwhile PatientsLikeMe continues to collect data that you can’t help but want to apply to living with a disease, which sometimes gets lost in the search for treating and curing a disease. Heywood isn’t the first human to have the idea of initiatives to collect transactional data of life that would benefit the Homo sapien collective. In April 2002, popular tech columnist and pundit Robert X. Cringely’s post on his PBS blog I, Cringely Chase Cringely: Finding Meaning in a Lost Life was an emotional read that detailed the loss of his infant son to Sudden Infant Death Syndrome while he held the boy in his arms. Cringely’s search for meaning brought him to the notion that SIDS could be beat if we knew more about this mysterious syndrome. He suggested the idea of monitoring all infants, knowing that a certain percentage would die (according to SIDS statistics) but we would know a great deal about what was going on preceding the deaths.
Image via Wikipedia
I doubt the Borg, the fictional villains from the Star Trek franchise would be having such philosophical debates and not just putting the collected data to use in real time. So do Borg value well-being more than us real humans? As communications professionals I think we’re just beginning to see past the trivial use of social media as a distribution channel and now look to them as part of a more organic ecosystem that both accelerates information spread but also provides real time insight and feedback. If we can get past privacy issues associated with this type of social information sharing we might be able to deal with well-being issues that could never be solved in the linear models of communication widely accepted now. The continuing pervasiveness of mobile technologies getting closer and closer to extensions of our human form could be part of the solution. Until then, Borg may be more human than we are in this capacity.
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Tags: Child Health, Conditions and Diseases, digital, disease, health, Mobile, Robert X. Cringely, SIDS, Sudden Infant Death Syndrome, well-being, wellbeing
Thoughtful post, Barry – certainly raises some interesting questions around crowdsourcing and privacy. I don’t think there is going to be a silver-bullet answer to these types of issues, and we’ll have to continue to live in that tension of balancing the gains from improved data collection, with personal privacy. Interestingly enough, BusinessWeek has a decent write-up on how different brands are building better experiences on top of data: bit.ly/cSFpTS. / http://twitter.com/rmoede
Thanks for the comment, Ryan. Balance is the right word for sure. The BusinessWeek article does a good job of reminding us that we’re beyond clunky exchanges of information between brands or orgs and the audience interacting with them. Thanks for the link.