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Originally Posted by indigogo
Paula - this is why I argue that if they want universal participation in clinical trials, then the price is universal access to the fruits of that participation.
We can't be required (not simply asked) to sacrifice our health for the greater good unless there is some benefit. I would argue the benefit would be access to the best health care without fear of bankruptcy or even lesser financial hardship.
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This is a great discussion! I would say that JAMA's call to action of patients seems a step in the right direction for a "novel public good", but how is this public good going to work when we can't even settle on having a truly, equitable public health care system? Instead we're bandying about with the status quo by maintaining private insurance and adding fuller public coverage for those who need it (amped up Medicaid and Medicare).
My thoughts are limited on this topic because JAMA holds their ideas hostage; we have to pay for access, so I have a limited idea of their vision. Let's see, patients may be expected to undergo extremely risky procedures or treatments for the sake of humankind (I don't think this is necessarily wrong), but what does any other key player give up in kind? When asking patients to act on a moral obligation, shouldn't we explore the role of patients in research within an entirely new paradigm based on a sense of what is right? I wish JAMA felt a moral obligation to provide free access to information. Questions that arise:
Patients are obligated to participate. Does this mean pharma, or any other proprietary researcher, is obligated to gift all intellectual property to a common "public good" research collective or database?
Would certain pharmas be acting in the public good by withholding potential curatives or novel treatments based on potentiality of profit?
What is the role of non-profit orgs like PDF?
How do we "recruit" (or do we "draft) PWP into research trials? Honestly, I didn't even know that non-participation was an issue until this forum.
Let's see journals like JAMA and other scientific research pubs and private databases pool together to develop a "public good" clearinghouse with epidemiology data and scientific articles for researchers. The patient would have
free access to info written by specialists including annual reviews of key promising research leads, literature reviews on what we do know about PD, and treatment standards.
These are just a few questions that come to mind. I think that having more PWP involved in research actually might empower the patient- something that I think we all advocate. Is the patient considered a primary player in this and respected?
This is a great opportunity for research, clinical, and patient communities to all come together toward a humanistic goal of eradicating disease, but there's so much more to it than just expecting patients to have the moral obligation to ease suffering.
Laura