PCORI has devoted 9 million taxpayer dollars and nearly two years focusing exclusively on figuring out what patient-centered outcomes research is. That's like the Department of Homeland Security or Defense Department doing nothing but trying to define what "security" and "defense" is.
Here's the full defintion of patient-centered outcomes research:
Patient-Centered Outcomes Research Working Definition
Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate
and make informed health care decisions, allowing their voices to be heard in assessing the
value of health care options. This research answers patient-centered questions such as:
1. “Given my personal characteristics, conditions and preferences, what should I expect
will happen to me?”
2. “What are my options and what are the potential benefits and harms of those options?”
3. “What can I do to improve the outcomes that are most important to me?”
4. “How can clinicians and the care delivery systems they work in help me make the best
decisions about my health and healthcare?”
(Note that for all the hot air about personalized medicine, there is no specific mention of genetic characteristics)
By way of comparison, it took less time to draft and ratify the Constitution of the United States. The excuse given for this over-cost and over-due delivery of a definition that leaves everyone more confused than ever is the following: " the difficulty in managing large numbers of healthcare providers with busy schedules and divergent interests." You see, these board members are much, much busier than Benjamin Franklin, John Adams, and Thomas Jefferson ever were.
And patient centered outcomes research is supposed to timely and scientifically up to date? If it took all this time just to agree on a definition, what can we expect about the effort to develop a research agenda that meets the definition?
As I have noted before, it will take less time to commercialize whole genome sequencing systems that produce same day results for clinical use then it will for PCORI, AHRQ, etc to decide what to study and to pay the groups who control the PCORI and AHRQ apparatus to do the research for the very same organizations. Did I forget to mention the incredible amount of cronyism involved in the entire CER process? But more on that in a future post.
A couple oversight hearings on what PCORI is really doing, how it's being done and whether it should be abolished would be beneficial. I mean, what's a couple more meetings and two days on the Hill when you spend two years defining what your organization should do. And I bet all those busy providers could clear their calendars pretty quick if called to testify.