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 drive personalized and tailored care for diseases. However, most doctors are too busy or overwhelmed to keep up with this rapidly changing field, so it’s up to the patients to make sure they are getting the very latest and greatest treatments. Only patients learning about the latest in tests, treatments, and procedures and demanding them will drive the medical professionals to keep up with the scientific literature. Patients sharing data is going to change the entire medical field; I’m honored to be part of this revolution.

Personally, Patientslikeme is not just a job; it’s 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.” Well, Patientslikeme changes all that. Now everybody can know everything.

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.

My publications (Some are as Mendenhall C.A., which was my maiden name):

• 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.
• Mendenhall C.A., Evenson R.E., 2002. Estimate of willingness to pay a premium for non-GM foods: A survey. In V. Santaniello, R.E. Evenson, & D. Zilberman (Eds.), Market development for genetically modified foods (pp. 55-61). New York: CAB International.
• Levesque M.J., Lowe C.A., Mendenhall C.A., 2001. Self-handicapping as a method of self-presentation: an analysis of costs and benefits. Current Research in Social Psychology 6(15):221-236.