Why Patients Need to Be Heard At Medical Congresses: The Patient's Perspective on CLL (chronic lymphocytic leukemia)
And if the time is not right for miracles, then let's at least do what we can to be sure that the researchers and doctors acknowledge and take into account our concerns about what we want from our providers, our therapies and our clinical trials.
If I can't get the miraculous cure, I want some incremental movement towards better therapies for all us.
This is the second part of a 5 part series on my take on the very specific topic on what the patients' voices should be part of medical congresses.
And that is just the start.
Our voices must be heard at the meetings between researchers and funders on how trials are set-up, at IRB (institutional review boards) that approve those trial designs and any subsequent revisions, payors who decide what treatments get covered and what don't, and of course in our doctors' offices when we are planning our therapy using a shared decision making model.
Listen to the first brief section monologue published on Dec 4, 2014 where I introduce myself
Here is the next segment.
Please let me know what you think?