PatientsLikeMe ™

The reasons for my belief in PatientsLikeMe are both personal and professional. Professionally, I know that we are on the brink of an explosion in genetic knowledge that can result in personalized and tailored care for diseases. Patients sharing their data is going to play a huge part in this change; I’m honored to be part of this revolution. Personally, PatientsLikeMe is very special to me. My mother passed away from cancer a few years ago. I think how much her journey would have been enriched if she could have shared her experiences (safely and anonymously) with others in her same situation. She was brilliant and friendly- she would have soaked up information and given critical reviews. And, I wonder if she could have still been here today if she knew more back then. I think of the mistakes we made in her care and the only thing I can say is that, “We didn’t know. Nobody told us.” Fortunately, now everybody can know everything by sharing information. I’m not happy with the care my mother got when she was ill, and I don’t want anyone else to make the mistakes we did. I don’t think a lot of patients get the care or respect they deserve. After all, your doctor doesn’t have your disease. You do. It’s time to take charge, share all you can, and learn all you can. 

Some publications:

• Brownstein C.A., Brownstein JS, Williams DS 3rd, Wicks P, Heywood JA. 2009. The power of social networking in medicine. Nat Biotechnol. Oct;27(10):888-90


• Brownstein C.A., Zhang J, Stillman A, Ellis B, Troiano N, Adams DJ, Gundberg CM, Lifton RP, Carpenter TO. 2010. Increased bone volume and correction of HYP mouse hypophosphatemia in the Klotho/HYP mouse. Endocrinology. Feb;151(2):492-501. Epub 2009 Dec 1.


• Brownstein, C.A. et al. 2008. A t9;13 translocation results in hypophosphatemic rickets with hyperparathyroidism. Proceedings of the National Academy of Sciences. Feb 28.


• Brownstein C.A., Brownstein J.S. 2008. Estimating Mortality in Post-Invasion Iraq. New England Journal of Medicine. Jan 31;358(5):445-7.


• Pearson JF, Brownstein CA, Brownstein JS. 2011. Potential for electronic health records and online social networking to redefine medical research. Clin Chem. Feb;57(2):196-204. 


• Turner MR, Wicks P, Brownstein CA, et al. 2011. Concordance between site of onset and limb dominance in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. Aug;82(8):853-4.