Patient Centered Outcomes Research Institute: So Yesterday, So Useless

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  • 01/22/2012
Last week life technologies announced it was launching the Benchtop Ion Proton Sequencer that will sequence an individual’s entire genome in less than 24 hours and for $99 a chip.   

This week the Patient Centered Outcomes Research Institute announced national priorities for comparative effectiveness research (CER).  Those ‘priorities’ included: spending money on comparative effectiveness research, spending money on communicating CER and spending money on learning how to carry out CER.  Note that no money is spent on comparing whether CER research produces better outcomes than what doctors usually do or genome informed medicine.   

Last week Life Technologies announced it was developing open-source software that doctors and patients can use to diagnose and select treatments. 

This week PCORI was discussing the idea of using a graphic comic book to explain the value of CER to consumers.  Really. 

Last week life Technologies and Eric Topol discussed how smartphones that combine genomic information with real time monitoring of illnesses (in 3-D) would be used to diagnose disease and monitor individualized response in real time in 1-2 years.

This week PCORI said that its national priority list is not final and it will take 1-2 years to come up with something final.    Carol Clancy, director of the Agency of Healthcare Research and Quality (AHRQ), said,  “We’re on a journey… (And) the process is at least as important as the final output or outcome, and it’s going to be an ongoing iterative process.”    Since AHRQ gets a 20 percent cut of what PCORI – a non-profit organization – raises through a surcharge on everyone’s health premiums (nearly a billion over ten years) no questions asked, I am sure Clancy hopes the journey is…iterative.

In five years Life Technologies will be able to sequence my genome in a couple of hours and for less than $100.    In five years, PCORI will have produced no original comparative studies but will have spent an average of $3 million on such research and nearly a billion dollars

It is already cheaper to sequence the genome of 1 million Americans than it is to for either AHRQ or PCORI to conduct reviews of old research.  And in five years Life Technologies will be able to sequence 100 million people for what PCORI will spend on studies that will be outdated by the time they are published and will still not be useful to guide individual treatment decisions. 

So why aren’t groups that are supposed to care about the disconnect between what entrepreneurs are producing to personalize medicine and what PCORI is babbling about at it’s endless series of meetings?  For instance, The National Pharmaceutical Council (NPC) is holding a conference on something called “Asymmetry in the Ability to Communicate CER Findings: Ethics and Issues for Informed Decision Making.”

I have no clue what asymmetrical abilities are.   The NPC brochure for the conference states:  “With billions of dollars being invested in comparative effectiveness research (CER), the good news is that the public will have increased access to health information in coming years. Yet as more and more information is communicated to patients, practitioners and payers, current regulatory policy may create asymmetries, or inequalities, in the ability of different stakeholders to convey information.” 

Now does everybody know what an asymmetry among stakeholders is?  Here’s a translation: how can stakeholders – apart from the usual suspects and the sales reps AHRQ is paying to peddle CER to doctors -- get a cut of PCORI dough?

NPC’s medical chief Robert Dubois claims: "CER has great potential to improve medical decision-making and as a result our overall health. However, the detail of how we implement and use CER is critical to achieving this goal."

It is clear that NPC doesn’t care whether PCORI and CER will impede the use and adoption of individualized genomic and clinical information.  It will not challenge PCORI raking in and spending $3 billion on the policy equivalent of shipping milk that is already past it’s expiration date. FDA or equal access to personalized medicine or not spent at all?  Why hasn’t one stakeholder (that’s Beltwayspeak for not criticizing dumb ideas for fear of not having a seat at “the table”) had the guts to ask if the money shouldn’t be spent on the FDA or making sure there is equal access to individualized medical information?

The Life Technologies breakthrough demonstrates the future is already here.   Too bad ‘stakeholders’ are propping up PCORI and pursuing 'asymmetries' instead of promoting personalized medicine.

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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