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PCORI-Agnda-and-Funding-response

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					My first issue with the PCORI agenda and research priorities centers around the first word of the name
PCORI. That is because in our society, to be a patient is a position of privilege. Dictated by class and
wealth. I reflected on my own family and how many people I have seen who died at their homes. They
were for various reasons not patients but they were human beings who would exist outside the PCORI
framework and research agenda.

This is a huge unresearched public health problem because as anyone will tell you in the modern
American urban prison system approximately 70% of all the incarcerated are there because of drug
offenses. In fact, Michelle Alexander points out in her new book “The New Jim Crow” that incarceration
rates have no correlation to crime rates which fluctuate. Not only has the war on drugs been a war on
the American people, particularly those of a certain class and in her thinking color, but it begs a
fundamental public health issue which only and institution like PCORI can tackle which is why Americans
feel the need and desire for illegal drugs in the first place?

PCORI must make this a research area of interest because the permanent underclass involved in illegal
drug activity, incarceration and addiction are of no interest to any university, corporation or healthcare
system. There is no way to make money off of them and they exist as society’s pariah. A permanent
underclass of invisible people who react to their pain, socio-economics status, and circumstances with a
form of self-medication which keeps them trapped in a complex web that often precludes them from
the term patient and locks them into the mis-diagnosis of “prisoner.” They know that no one in this
country cares about them and they act like it.

_____________________

As an example, when an American says the word “patient” I would wager they have an image in mind of
who that person is and what they look like. If it is the person themselves then they have a certain
agency in claiming that term. I would argue that for hundreds of thousands of Americans that term is
inaccessible and at the least uncomfortable. I believe that the thought of being someone’s “patient”
brings issues of up fear and loathing ranging from anxiety about affordability to overall contempt for the
term - “I ain’t nobody’s patient.” I further believe this anxiety is exacerbated if they are asked to be a
research subject.

I would wager that I am the only person who expressed this concern and if PCORI gives weight to
numbers of comments in particular category versus perspective or argument then these comments will
be thrown out. PCORI lacks representation among the underclass and has precluded their input in this
process of commenting on the agenda and priorities because it has not crossed the digital divide.
Further, I do not believe we look at poverty as a public health issue, but now that poverty is associated
with a particular behavior which has to do with non-prescribed drug use, PCORI has a green light to
make this an area of particular interest in its research. They payoff is of course a tremendous cost
savings in social programs, a boost to American productivity and creativity and a profound and lasting
impact on the lives of the invisible people. Not to do so will normalize patterns of psychological shock
from being born poor, involvement with addiction and medication outside the normal doctor patient
relationship and thus the prison system with its proclivity of recidivism due to the stigma and second
class citizenship of former criminals. To not address this issue PCORI will contribute significantly to the
creation of a permanent caste system in America, ignore what is arguably the most pressing public
health issue of our time and to a certain extent abdicate its role to provide research in areas lacking that
are of the public interest.
Further, I would argue that if PCORI was trying to identify the area of most savings, most promise “the
blind spot” in the practice of American medicine overall then by the time a person is a patient it is
already too late.



_________________________

I say this because another area which I think is sorely lacking in the PCORI agenda and priorities is the
scan, cooperation and education that could be gleaned from international perspectives. Denmark has
realized a tremendous reduction in healthcare costs and closed 40% of its hospitals due largely to its
focus on prevention. This too would require a paradigm shift in the current thinking not just at PCORI
but in medicine overall. Still, I do not understand why PCORI deliberately ignores the rich possibilities
from adopting best practices in other nations as a topic of interest in its research agenda.

The term patient precludes one from looking at the relationship as a partnership as it is in Denmark
where physicians are encouraged to respond to emails and phone enquires. Further, to emphasize the
divide between physician and patient necessarily disempowers the patient and undermines the goal of
“patient” or human centered research. This is because the patient is traditionally seen as the receiver
of wisdom, diagnosis, prediction and repair from the wiser physician. Everything works out easier that
way for some people because they are absolved of the responsibility.

The term patient however can be even more exacerbating in communities when combined with the
word ‘research.’ This is because in many communities people do not trust researchers and certainly do
not consider themselves as patients unless they are standing in front of a doctor or admitted to a
hospital. In fact, I believe that to most Americans the words ‘patient’ combined with ’research’ present
a frightening combination. Visions of the Tuskegee experiments, Operation MK-Ultra and other bad
events may come to mind but at the least ‘patient research’ is saying to “expect uncertainty.”

Americans rarely if ever define themselves as “patients,” even if they have the means to be one. It
reminds people of something negative, unexpected and unfortunate in their lives. In other words, most
people want to define themselves as human beings, living a life, doing the best they can and they just
happen to have this disease. The overwhelming majority of people would describe themselves as a
father, or mother, or citizen, but not as a patient, especially if they have chronic, low visible diseases for
which they are trying to maintain. The disease, which forces a person to be a patient, is generally a
source of embarrassment and humiliation if not outright fear for the average human being.

Please also consider that if I am being proactive and doing consumer based symptom research, I am
once again not going to consider myself a patient, nor might I look at “Patient Centered” research as
necessarily relevant. I am going to be much more inclined to go to the corporate sites, particularly
useful to me would be the ones that have a symptom quiz or assessment that I can fill in online and get
my results right away.

My suggestion is to talk about patients as human beings, people or persons. This is because as I argue
there is a large, costly and complex health crisis which is non-clinical and is completely unaddressed and
largely ignored by PCORI because of its makeup of highly educated well to do successful persons. I
believe the entire PCORI agenda and research priorities are skewed to an emphasis on clinician solutions
which are necessarily privileged and exclusive and that this does not serve the American people on the
whole very well.

_________________________

Another factor to consider in the corporatization relationship of PCORI is the logo. I hope that the
institute might consider my comments. I believe the PCORI logo is very beautiful, its colorful, it implies
motion, its very current just delightful. I know a lot of money was spent to arrive at that logo and it
shows. The biggest problem I have is that the logo in no way says “research you can trust”. It is
indistinguishable from a logo that might be used by a drug company, a healthcare system or even a
dance company. The colors are very trendy and I noticed a number of similar color patterns in recent
logo adjustments such as the Environmental Protection Agency, Medline and several physician practices
and groups. In fact it is really easy to find logos similar to PCORI’s everywhere in medicine, which in the
end makes the Institute kind of indistinguishable.

The logo also seems to imply that PCORI is going to emphasize preventative health which is not really
the case. It seems to emphasize internal transformation as in a drug or substance altering the human
body toward optimism feeling good or celebrating, when in fact PCORI is presenting factual information
that is not always optimistic, transformational or good news. The logo seems to imply that PCORI has a
certain vision of what a patient looks like but the logo does not speak to dark degenerative diseases like
diabetes, dengue fever or ebola. Instead the logo speaks to healthy outcomes for middle class
Americans and would be perfect really for a class of psychological drugs that might cure depression or
insomnia. The logo to me does not speak to either extremes of the population in terms of poverty and
opulence or pediatric vs. geriatric.

My suggestion is that if the logo is revised it be much more authoritarian, research and educational
based. Almost patterned after University logos or even the medicine staff as opposed to modern
corporate chic. This logo you have will date the organization and it kind of implies that it is shallow
whereas a more traditional seal type logo may seem dated for 2012 but at least it is timeless and speaks
to the long term stability or outlook of the organization. I would strongly recommend that PCORI look
to the most long term and stable institutions like the Library of Congress, DHHS and other institutions
and create some type of seal that articulates the permanence of the institution, the time and effort in
research and the importance of knowledge rather than something that says “patient centered.” This is
because of all the commodities in which PCORI trades, the most important is trust. Its hard for me to
trust that logo because it looks so corporate.

____________________________


I find it interesting how the research agenda has left out the built environment as an interest of the
American public and healthcare priorities.

Increasingly Americans find better facilities abroad and when they can afford to travel to other countries
to have surgery abroad and an entirely new industry has emerged called “medical tourism.” Beyond
that is the issue of facilities and their impact on healing and patient recovery. This has to be a priority
for PCORI because it is a contributing factor to clinical efficacy and is greatly impacted by disparities. A
great example of this issue struck me when former DC Mayor Marion Barry had to have surgery on his
kidneys. Rather than go to Howard University Hospital which is the Public Hospital for the people in
Washington, DC, or the Washington Hospital Center which is considered the middle class choice, Barry
chose to go to Sibley hospital which is located in the wealthiest part of the city and is considered the
hospital reserved for the aristocracy. I think most Washingtonians would make the same choice, and
Sibley to my knowledge does not even rank in the U.S. News and World Report issue on America’s best
hospitals!

The American people lack a patient centered, reliable unbiased source of information regarding
hospitals. We do not have the knowledge nor can we access any reference material on what a good
hospital, clinic or office looks like and should and should not have. We have no source of learning
hospital acquired infection rates, success areas or relative costs throughout the region for procedures.
Hospitals keep this information securely guarded from the American public and so people get
unnecessary procedures, acquire staph infections, pay more out of pocket costs and even have different
outcomes depending on where they go as much if not more than who they see!

In addition PCORI should be made aware of the movement now taking place in the built environment
called “Evidence Based Design.” EBD is outcome centered research that proves the impact of light,
sound, color and other factors on patients. This research rose up spontaneously and is entirely
consistent with the goals, methods and vision of PCORI. It should be looked at very carefully by PCORI
leadership because EBD has one key factor in its history that PCORI does not. It is a grassroots
movement.

If PCORI were truly patient centered, then it would focus on the environment that the patient
encounters and must live within particularly as it affects clinical outcomes. Hospitals by themselves kill
about 103,000 people each year through HAIs. And I would imagine that most of those numbers will
come from a small number of hospitals and clinicians. However, this issue has a dramatic impact on
Patient Outcomes and it is not mentioned anywhere in the draft document.

________________________


Finally, in the funding model you have made prevention, diagnosis and treatment options your number
one funding allocation. This to me is where PCORI really shows its hand as a homogeneous organization.
This is because the thinking in addressing the problems of patient centeredness, cost and effectiveness
are exceptionally conventional and thus your impact runs the risk of also being anachronistic.

Disparities I would argue, should not be examined simply by a social impact lens, but moreso by a
fiduciary lens in terms of what it costs the entire healthcare system! In Camden, NJ for example, Dr.
Jeffrey Brenner proved that 1% of the patients account for one third of the city’s medical costs. In six
years, 900 people accounted for 4,000 hospital visits and $200 million in medical bills. Therefore I would
argue that disparities as a priority both needs to move beyond the questions of race, ethnicity, gender,
location and socio economic status and look at disparities in system utilization and cost which may or
may not relate to your current definition of disparities. Or this subject needs a separate categorization
as an area of interest for PCORI, called “system utilization” because as it turns out it is just a few people
with a few diagnoses who are crippling the entire system.

Further, I might call that separate category ‘System Utilization and Preparation” because PCORI needs to
look into the horizon to see emerging trends in disease (diabetes, obesity, etc.), so that its PCOR being
conducted today is relevant for tomorrow and helps us cut costs and improve outcomes by anticipating
population needs and getting ahead of conditions instead of always reacting to them.

________________

Yet, I would be remiss if I did not make a stronger argument for the percentage for healthcare
disparities. 10% of our funding to addressing disparities! That is so cruel.

You know the word unconscionable is usually associated with disparities as a way of describing their
existence in healthcare. To be “unconscionable” is defined as being “not in accordance with what is just
or reasonable, not guided by conscience, unscrupulous. To me it means to behave in a way that is
unethical, irreconcilable with what it means to be a human being. That is because as human beings,
perhaps our most fundamental charge, duty or obligation is to care for one another. At its essence that
is what healthcare is all about. I would argue that for PCORI not to make social disparities in healthcare
the top priority is unconscionable and shows how far we have come from the origins of medicine.

Disparities in healthcare is an intentional act, a willful neglect and prejudice against people because of
their skin color, sex, social class, religion, geography or means. To produce a funding priority which
minimizes the reconciliation of this catastrophe is to be a willing participant in its perpetuation. 10% of
funding is saying to the nation, the industries, the groups and the individuals who perpetuate disparities
that “they are not that important.” They are not important to PCORI and they are not important for you
either. It is saying to the victims of these disparities that they should expect and accept inferior
healthcare as status quo.

HHS head Kathleen Sebelius called the efforts of her agency in American Indian Healthcare a “historic
failure.” I think that is correct. Disparities, racism, sexism, and genocide will be that for which this
moment in history will be remembered. PCORI has by its declaration of 10% to addressing disparities
declared which side it is on and how it will be remembered. I believe that 10% funding to disparities is a
badge of shame. It is a pessimistic number that in essence gives approval to the status quo and not
even a rain check for the victims.

Again there is no institution in America with the interest, power and capability to overturn this issue.
PCORI is the last and only hope, but you have opted to turn your back on the unfortunate in favor of the
“patients.” The paying customers who are the idol of every system, physician, facility and researcher,
they already set the healthcare agenda and the institute is just marching along with a practice that is
unconscionable. No other funding priority can be described as in a state of crisis where people’s lives
are concerned as much as disparities.

_______________

Along those lines I am also disappointed that PCORI has no interest in international systems, paradigms
and practices.

				
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