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Originally Posted by S
QUOTE=G. Owen Schaefer;547960
Participants should keep in mind the sharp distinction between the goals of research (to gather information for future use) and treatment (to care for the patient in front of you).
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Great thread and discussion/ I thank Dr. Owen Schaefer for his post. In the spirit of science and hoping for a good discussion I say that I fail to see a sharp distinction between the goals of research and treatment. In fact, I see them overlapping. The goals of research, particularly in biology are to understand a given problem and solve it, gain information for both immediate as well as future use. Future use may be the bigger picture and so its easy to forget the immediate use. \
In many fields of biology, patients and treatments or lack there of drive research. Research and treatment feed into each other. For example, Phase 1 clinical trials are for saftey (research, data collection), but don't we all look for efficacy (treatment+ data)? Whether its Phase 1 or 3, as a researcher, I gather info, and as a patient it is an experimental treatment for me. The anticipation and the goals of a researcher and a patient are same i.e., that the drug works. Yes, there is a possibility it might not work, but one cannot participate in a clinical study if she/he thinks its a futile exercise.
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How long did we struggle to explain this distinction in the DOR? This is so amazingly
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This point leads back to my original statement about the goals/agendas of the different constituencies served by the national PD orgs. Successsful marketing depends on correctly identifying audiences and their unique wants and needs. So, if we are going to make headway with the DOR, maybe we start here.
Any thoughts?
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Sheryl,
From my point of view, there should be an effort to bridge the gap between research and treatment that exists now and the DOR (which is new to me and i know nothing about it) or the advocates need to do that. I am a researcher,developed/developing products for clinical studies and as a PWP participate in clinical studies I believe, the goals/agendas of two parties overlap a lot. Its just that there is very little communication between the two groups and that seems to be problem from my point of view. Patients have an obligation to participate in research and the scientists have an obligation to make them partners in treatments. Its the obligation/duty of the drug company/Govt to reward and care for the person who participates in studies.
thats my two cents worth on this topic....
girija
Sheryl[/QUOTE]