Bioethics Discussion Blog: Health Advocacy Groups Deserve Scrutiny or Do They?

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Thursday, June 23, 2011

Health Advocacy Groups Deserve Scrutiny or Do They?

Health advocacy groups such as those who champion goals to cure or better the life of patients with HIV, breast cancer, mental illness, autism, muscular dystrophy, epilepsy and more should not be taken by their face value but scrutinized. Sheila M. Rothman PhD writing in “Commentary” in the Journal of the American Medical Association (June 22/29 2011) issue concludes "However valuable independent advocacy organizations are for a democratic society and however important their services provided to targeted populations, their advocacy positions and the related underlying assumptions must be scrutinized with the same diligence as those of other stakeholders. There should be no automatic assumption that all health advocacy organizations deserve special standing or represent the common good."

The professor expresses as an example concern about some health advocacy groups which “are so committed to securing diagnostic and treatment interventions for their targeted populations that they minimize the value of evidence-based medicine (EBM) and comparative effectiveness research. They also ignore the potential effects of their advocacy on healthcare costs.”

(EBM represent professional evaluations of the results of controlled and statistically valid experiments regarding the causes and treatments for various diseases. These evaluations can then be used to guide the public and physicians regarding approaches to diagnosis and therapy.)

Do you think that what I wrote here as examples of Dr. Rothman’s view of these groups hold merit? Do you support one or more of the health advocacy groups? Are you a patient with one of the diseases? If so, do you want diagnosis and treatment set by the group’s conclusions rather than that of published results of scientific experiments? ..Maurice.

2 Comments:

At Friday, June 24, 2011 8:18:00 AM, Blogger Dmitri Pisartchik said...

Another engaging question, Maurice.

Not being a member of a group, or relying in an advocacy group in any way, I think I speak as a bit of an outsider. As such, I do think that the concerned raised by Rothman are valid. However, I also think that that is exactly what advocacy groups are and ought to be about (within limits). Their objective is not the overall good, or the total cost, or clinical equipoise. Their objective are the interests of the people they represent. As such all these other considerations just mentioned are at most of secondary importance and hold only derivative value in light of the ultimate goal of advancing the interests of their given group of patients. And, quite frankly, so long as AG's don't have the final say or don't dominate the discussion on which treatments ought to be available, how health care resources ought to be distributed, etc. I see no problem with them being an otherwise legitimate party to the discussion surrounding these issues.

 
At Friday, June 24, 2011 7:35:00 PM, Blogger Maurice Bernstein, M.D. said...

Dmitri, good argument if one assumes that advocacy groups have no financial or political clout. Without such clout, how can they convince their patients and other supporters (such as also the families) that they can achieve their primary goal of facilitating or achieving the interests of the people they represent? To exercise that clout they must take some responsibility for the consequences of their actions. That consequence might include minimizing the value of EBM and minimizing the effect of their actions on the national economy related to healthcare. ..Maurice.

 

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