Blog Post
August 12, 2018

Secure Common Open Repositories

CancerCommons and PatientsLikeMe are two organizations which will take your patient data and make it available for research.  In addition, below is a list of companies which will purportedly store and rent out your clinical and genomic data, and then give you a cut of the proceeds.  Others are starting up.  However, as the recent 23andme news shows, despite the best efforts of the founders, you never know how the company will eventually be stewarded. 

ADVERTISEMENT.  Sadly, no one is more interested in my own survival than I.  So I have chosen to get involved in my own treatment.  To assist that, I get, keep and organize my own data (Test results, radiology films, clinical history which are spread between Sutter, JHU and UCSF).  This allows me to get familiar with my own case, be my own advocate and ask appropriate questions when I see a specialist who, quite frankly, may be tired and have other things on his/her mind.  For those who find this overwhelming, let me give you a tiny bit of good news.  Although deep expertise in any field takes years to acquire, it only takes weeks to understand the “state of the art” in most anything.  Start now.  Don't let yourself get intimidated either by the material or the doctors.



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