PCORI's Maximum Feasible Participation (Of Consultants)

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  • 04/18/2012
I am sure that I will be one of the few that doesn't laud PCORI for focusing so much on patient-centeredness.  But I have two questions:  Just what is PCORI (and all the CER cronies they will pay through AHRQ to consult) doing? 

That PCORI was able to get JAMA to publish two fluffy and self congratulatory editorials that explain how patient-centered reflects the extent to which PCORI, AHRQ and the consultants it funds will be able to disseminate about any crap that it produces through the 'major' medical media outlets.   AHRQ, PCORI and cronies are able to get anything it produces published in medical journals.  It is spending hundeds of millions of dollars peddling CER to doctors who in exchange get CME credit just for clicking on to a website.   And PCORI will be spending hundreds of millions of dollars holding conferences, webinars, etc  to explain to 'stakeholders' how patient-cetered they are.

But what exactly is PCORI producing?

In the JAMA puff piece, Joe Selby and colleagues note:

"The institute's first funding announcement solicited projects focused on methods for engaging patients and other stakeholders in all aspects of the research process. "

They conclude that "The proposition that greater involvement of patients, clinicians, and others in the research process could help reorient the clinical research enterprise, reduce clinical uncertainty, and speed adoption of meaningful findings holds great promise, but remains to be tested. PCORI will test this hypothesis. The underlying imperative is to improve patients' care experience, decision making, and health outcomes. Patients as well as the physicians and other health care professionals who care for and about them are invited and encouraged to join in this effort. "

This sounds alot like maximum feasible participation encouraged in community action programs during the 1960s.   In his book "Maximum Feasible Misunderstanding,"  Daniel Patrick Moynihan noted that the "war on poverty was not declared at the behest of the poor.  It was declared in their interests by persons confident in their judgment on such matters." 

The War on Poverty was not a war and did not do much about poverty.  But it did employ and give out grants to the policy entrepreneurs who conceived the War on Poverty in the first place.  That consisted of professional economists, professional social scientists, government officials and professional philanthropists.

Similarly,  PCORI was not created in response to an outcry from patients about the lack of inclusion of their "voices" in medical decision making.  It was a product of the same said professionals who supported PPACA and who believe that spending $3 billion on making sure the CER they produce is marketed and used is in the nation's interest.

The article by the Methods Committee on how it plans to spend money on grants reflects a similar disconnect between the needs of patients and the myopic goals of the CER community.  See if you can figure out the punchline of this paragraph:

"Ms M is a 45-year-old woman with depression (Box 2), whose situation similarly highlights the gap between existing research and the characteristics and concerns of patients. Little evidence exists about which sequence of treatments is optimal for Ms M's constellation of symptoms, adverse effects, or initial response. Despite more than 1000 trials on antidepressants and related treatments, most studies include patients with narrowly defined characteristics who are followed up for short periods, do not take place in settings in which care is routinely delivered, and include a limited spectrum of comparators, including drugs and other therapeutic approaches.11‚Äč How can clinical research focusing on much larger, long-term issues trials yield more personalized guidance for patients like Ms M?12"


The Methods Committee presumes that since all manner of studies have never been able to identify what treatment is right for Mrs M that the solution is to spend more  money on methodologies that will be larger and more long term but at the same time yield more personalized guidance.  

Does anyone believe that bigger studies that take longer to produce will,  especially at a time when medical information is becoming digitized and atomized, yield personalized guidance that patients will abide by and obey?    Am I the only one who sees a social science scam in all this?  Is this too cynical on my part?

More later. 

Center for Medicine in the Public Interest is a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.

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