When opening the Sunday Review section of the New York Times this past weekend, I did a double-take as a topic of much discussion here at PDF was featured front and center - trumping commentary on the state of the economy, international relations and the latest political debate.
"Do Clinical Trials Work?," by Clifton Leaf serves as a primer on some of the key issues that prevail within the clinical research enterprise - the tension between scientific inquiry and patient priorities; the odds that study sponsors take when betting on the success of a potential therapy; and the disconnect between those who participate in a study and those who may actually benefit from the treatment being tested. It also serves as yet another wake-up call on why people who are living with a disease, be it cancer, Alzheimer's or Parkinson's, need to be formally included in research decision-making.
I can't help but wonder, would clinical research be in a different state if people who actually had the disease were sitting around the table, eye-to-eye with researchers, study sponsors and federal regulators? Would their presence and perspective change the priorities and processes of clinical research? Would it create the sense of urgency that occurs when the personal is married with the professional?
Of course, we here at PDF would answer in the affirmative as would our 200 Research Advocates across the country. The bottom line - we can right this "Enterprise" - but only if we recognize who should be at the helm - the patient.
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2 comments:
Excellent article and you are so right. PD patients should be included in the decision making process.
I agree with your position Ronnie; however, attending and participating in various health and scientific symposia is different than having one's voice be heard and attended to. The Clinical Rresearch 'Enterprise' needs to demonstrate the value of patient input with action and not simply patronize positions expressing life experiences.
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