The Brain Project

http://today.msnbc.msn.com/id/27717674/

In line with Geoffrey’s post about Patientslikeme, I recently came across the above article about a man who is using Web 2.0 products to draw attention to medical issues requiring further study. Some of you may remember the news story from a few years ago about a babysitter who admitted to shaking the newborn she was watching so much so that the child suffered both physical injuries as well as pediatric traumatic brain injury (PTBI). Now, three years later, the child’s father, Patrick Donohue has created an open format wiki so that families of those with shaken baby syndrome can post their child’s private medical records online with the hope that families are better able to cope with the syndrome, and that medical professionals (who generally know little about PTBI and neuroplasticity) may be able to learn from having all relevant information in one area on the web.

            I checked out the website,  www.thebrainproject.com, and I really think that what Patrick has done is quite amazing. In addition to being able to view dozens of medical records online, readers can also track his daughter’s progress by viewing her daily logs, etc. While I have yet to come across any comments or thoughts from those in the medical profession, I can imagine that having immediate access to such a huge amount of information raises a tremendous amount of awareness, benefiting research and advancements in the field. I also think that families are better able to manage expectations being able to see first hand what other patients go through and to learn doctor recommendations, etc. I’m curious to see the impact that this sharing of information will have on shaken baby syndrome. I think something like this could be extremely impacting, however I can imagine that it all depends on how much families and patients are willing to disclose, as I can understand the hesitancy to post such private information to the public. All in all, I think that this continues to exemplify how web 2.0 products are being used towards innovations in medicine and the health care industry.