Sharing Personal Health Stories

Although, the elderly often experience the greatest number of medical problems, young adults have their fair share of medical stories.

Myself for example- I was 28 years old when I had a small stroke that caused a whole slew of complications.  That experience was enlightening on many different levels.  I noticed that with each person I opened up to about my health experience, I got an equally open and honest response.  EVERYONE, including people who look healthy and happy,  have a health care experience from the most mundane (getting a flu shot) to the most severe (getting diagnosed with Lyme disease).    I  found out my boss suffers from gout, my therapist almost died twice, my co-worker came down with a rare parasite that almost killed him, etc.   Once I realized that everyone has a medical story, I felt a sense of community and comfort.

In the same way that we can create a community of “shared medical stories”, we can also create a community of  evidence based patients: a community of people who believe in the power of evidence to get better health care.  The internet and social media will help us create this community.

For example, lets pretend you are diagnosed with a major medical disease.” You want and expect the best treatment.  Your doctor says do “treatment A.” Your research on the web says do “treatment B.”  Other doctors (and other experts) tell you about “treatment C.”  There are thousands of patients like you who are also looking for the “best” treatment online right now.

I recommend you TAKE CHARGE!

Find and assemble a group of people who have the same medical condition.   Refer them to this website and/or just convince them to demand evidence for treatment safety and efficacy.  Go to the medical association/society that best represents your medical condition and demand that they help you get the right evidence.  Do a crowdsourcing campaign and raise the necessary funds to hire a company that specializes in finding and analyzing health care evidence.

NOTE:  If you bring the right evidence to your insurance company that proves that a treatment they don’t cover is the best treatment for your medical problem, they are required to cover it.

This video is with a small group of young people sharing their personal health experiences.  The entire conversation focuses on how these 3 patients made a medical decision and whether or not they used evidence.



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