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?
How can you argue with that? The problem is, PCORI in investing heavily in the dissemination of research and the use of methods that are NOT patient-centered. PCORI relies upon the US Preventive Services Task Force as the foundational source of CER to determine what screening tools to use.
USPSTF decisions are based on one-size fits all data and demands long term studies that show a screening tool directly reduces all-cause mortality As I have noted before, that means nothing can be proven to be preventive.
Moreover, there is no mention in any PCORI publications or grant propsoals about genomics or personalized medicine. Zero. Check that, one mention in the context of questioning the value of personalized medicine.
Third, (and this my pet peeve) the bias toward chiropractors is rife in research proposals. PCORI implies that chiropractors -- who as a profession oppose vaccinations -- are a cheaper approach to orthopedic problems even though once you go to chiropractor you are expected to keep going and buy all their herbs, vitamins, etc. Could it be that the sop to an industry that combines auto mechanics, biology, New Age babble and anti-vaccination bias is a result of having a chiropractor on the PCORI board has anything to do with it. And by the way, will PCORI issue a statement defending vaccines?
"One of her neighbors is a chiropractor who treated two of her coworkers successfully for on-the-job back injuries. The chiropractor recommended that
she avoid narcotic medications, stay active and try a course of spinal manipulation for a few weeks before considering an MRI or surgery. An acupuncturist whom the worker has consulted for temporary relief of neck pain in the past also recommended a series of treatments. "
And this evidence based statement:
I have a patient who has a knee problem
and, by chance, went to a chiropractor
and was there for four sessions; and
now she is normal. She was in need of
knee surgery, and now she isn’t.
Fourth, the questions posed cannot be answered by PCORI or any one else.
Fifth, PCORI cannot keep up with the flood of individualized treatments for diseases such as cancer, multiple scleroris, HIV, hypertension and admits it:
"The rapid pace of introduction of new diagnostics and the diversity of new technologies raise questions about the role and added benefit of these new options for guiding clinical decisions and changing patient outcomes include the role of molecular diagnostics in managing the care of patients with cancer. Some new diagnostic technologies have potential uses for a wide range of conditions, but the evidence base demonstrating benefit for these new indications fails to keep pace with use. For example, there continues to be a desire for evidence to support the use of PET imaging, MRI, and CT for a number of conditions, including oncology and lower back pain. Finally, questions sometimes remain about the long-term safety of well-established modalities, even some modalities perceived traditionally as having relatively little risk, such as dental x-rays. "
Does PCORI really think it or any entity develop an 'evidence base' a la USPTF that will "keep pace with use?" By design and definition then, CER will delay and discourage innovation, no matter how patient-centered PCORI claims to be.
t will by definition and design not only hold up access to these treatments by requiring CER before they are adopted, the studies -- which cannot capture the diversity of experiences and responses it claims it will measure -- will be outdated. In any even PCORI presumes that CER must precede use of new technologies before they are used or paid for.
Finally, the so-called patient-centered processes it claims to be developing are designed to discourage use of new treatments. "Shared decisionmaking" has been show to be biased against intervention by presenting patients the bad news about a treatment -- rare and dramatic risks -- before 'sharing' information about the benefits.
Here's an example of how PCORI frames patient-centered decisionmaking:
It used to be accepted that we screen everyone
for prostate cancer who is a candidate. Now we
don't know what to do.
—Primary care physician
As far as exercise goes, is there something nonmedical like yoga or breathing exercise, or
should [my son] be doing anything? Is there
anything he can do other than take medicine, or
will he be on medicine for the rest of his life?
—Parent of pediatric patient
The theme is less should be more, cheaper is better in most cases. Or at least innovations should be considered guilty before being found -- after years of CER research -- proven effective. Of course PCORI is not measuring the impact of CER on the pace of innovation and how it will affect life expectancy and well-being compared to accelerating personalized medicine.
We have and will continue to do so even though it seems 'stakeholders' have been frightened into not challenging PCORI on that score. Instead of investing in research on the value of their innovations, they are not only playing ball with PCORI, they are buying the equipment and ball field to sustain the stupidity.