|
Subcommittee on Health
July 17, 2002
10:00 AM
2123 Rayburn House Office Building
Thank
you Mr. Chairman, and Members of the Committee, for inviting me to testify
today. I am Fran Visco, President
of the National Breast Cancer Coalition (NBCC), and a breast cancer survivor.
I am one of the 3 million women living with breast cancer in the United
States today.
The
National Breast Cancer Coalition is a grassroots advocacy organization dedicated
to ending breast cancer through the power of action and advocacy.
The Coalition's main goals are to increase federal funding for breast
cancer research and collaborate with the scientific community to implement new
models of research; improve access to high quality health care and breast cancer
clinical trials for all women; and expand the influence of breast cancer
advocates in the decision-making process.
NBCC has
been fighting for access to high quality breast cancer care since its inception
in 1991. While much of the debate
over the past decade has focused on how to deliver and finance health care, we
believe that these are secondary issues. Before we can determine what system best delivers quality
breast cancer care, we first have to answer a more basic question: what is
quality care? How does it compare to the kind of care that patients currently
receive?
The
issue before the Committee today deals with whether excessive litigation is
harming patient access to care. However,
rather than focusing on whether litigation has increased, and whether jury
awards are too high, we think the more important questions are: What type of
care do patients deserve? Why are
they turning to the court system to get it?
Will limited accountability and capping damages solve the problem?
The
Institute of Medicine has published a number of reports -- Crossing the
Quality Chasm, To Err is Human, and Enhancing Data Systems to
Improve the Quality of Care, which address important concerns about the
quality of the health care that patients currently receive. These reports
revealed that in many ways the healthcare system is broken, and that patients do
not have access to the care they deserve.
The focus must be on improving the system - and ensuring a
patient-centered, accountable system of care.
The
National Breast Cancer Coalition is focused through its Quality Care Initiative
to accomplish this goal. In fact, NBCC believes that the most effective way to
reduce lawsuits is to create a fair and transparent system of accountability for
health care. Once defined, a high
quality health care system would be one where everyone knows the rules.
Doctors would follow it. Insurance
companies would embrace it. And
patients would benefit from it.
Moreover,
in a quality health care system, no one would assume that the doctor is always
right, that the health plan is always wrong.
Rather, we would have guidance from a comprehensive set of high quality
health care standards. Patients
would have access to evidence-based medicine.
Health plans would deny certain procedures only if they were ineffective,
not because of the bottom line. Patients
would not assume that more care is better care, because with a more transparent
system, they would be better educated and more empowered.
In NBCC's vision of a quality care system, providers would be trained
in a patient-centered perspective - from the beginning.
I would
like to focus my testimony on two main points:
First,
the reason that the National Breast Cancer Coalition cares about this issue is
that we are committed to quality cancer care, and we believe that accountability
is a key component to getting this care.
NBCC is
working with its 600 member organizations, and tens and thousands of breast
cancer advocates across the country in a partnership with committed health
insurers, providers and public policy officials to define a quality health care
system, to put it in place, and to ensure that all breast cancer patients have
access to it. Ultimately, we know
that without accountability in the system, we will never have quality care.
In the
Coalition's vision of quality, patients would get access to high quality
evidence-based medicine. Patients
would be ensured access to approved clinical trials, which provide the best
evidence about what works, and what does not.
Patients would have a seat at the tables where decisions about breast
cancer are made, and the system would be more transparent.
Transparency would lead to trust. Transparency
would also result in a built-in infrastructure of accountability - one that
would limit the number of patients harmed in the system, and compensate those
who were injured. Providers and
institutions would place the highest premium on delivering high quality care to
their patients, and health plans would support providers in this endeavor.
NBCC
appreciates the difficult challenge in working to fix a system that may be
broken as opposed to just saying what is wrong with it.
It is for that reason that we hope you will embrace the opportunity to
work to improve the quality of our healthcare system, and to reduce patients'
need to turn to the courts to get the care they deserve.
When
patients are diagnosed with breast cancer, the last thing they want while they
fight for their lives is to have to go to court and fight for their care.
If lawsuits are increasing, it is fair to assume that patients may not be
getting access to the type of care they need, when they need it.
We have a responsibility to work together to improve patients' outcomes
in the healthcare system.
Recently,
we have seen first hand the harm that results when there is a lack of
accountability for corporate and individuals' actions.
We can pull relevant examples from the accounting world where corporate
executives acted in bad faith, at the expense of their employees and the public,
without concern that they'd be held liable for their actions.
It is only now that the bad actors are splashed across the front pages of
newspapers, and forced to testify before Congress to explain their actions, that
the corporate culture is seeking to improve the system.
And it is only because the corporate world is being held accountable for
its illegal activity that it is committed to change.
There is no doubt that accountability can be a powerful deterrent, and
that it is an essential component of change.
Why,
then, would Congress seek to limit accountability in the health care system
rather than improve the quality of care that patients receive? The way to
improve quality care, minimize medical errors, reduce medical costs, and deter
bad actors cannot be achieved by simply reducing damage awards or limiting
enforcement. While the
solution may be complex, the National Breast Cancer Coalition is committed to
working with Members to ensure that all individuals have access to a quality
healthcare system where they receive their care without having to go to court.
NBCC
believes that the right to sue also serves as an assurance that patients who
have been injured have access to redress for injuries caused by medical errors
and malpractice.
Congress
has made it clear that employees of Enron and WorldCom should have recourse for
life savings they have lost due to actions of others. Likewise, shouldn't a patient, who after being denied
access to high quality care, or being the victim of medical malpractice, have
the chance to be compensated for her loss?
We have
all heard the horror stories about patients who are denied access to quality
care, and suffer tragic consequences as a result.
While these individual stories are compelling and important to address,
we believe that the focus of today's hearing should be on what we can do to
move forward toward a more patient-centered, evidence-based system of quality
health care within which patients are survivors rather than victims.
Second,
the ultimate goal is to make certain that patients have access to quality
healthcare. Extensive litigation
may not be standing in the way.
While
medical malpractice insurance rates are increasing, there is no conclusive
evidence as to why. There also
seems to be a lack of clarity about what this really means for patients.
NBCC feels strongly that medical decisions must be evidence-based;
likewise, we believe that legislation must stem from an evidence-based analysis.
We must ensure that we are addressing the real issue, the right way,
rather than rushing to enact a solution before we truly understand the problem.
According
to a recent "Wall Street Journal" article, business decisions made by the
insurance industry may also have contributed to the current crisis in affordable
coverage. During the last
decade, malpractice insurers competed for a national market share, keeping
prices artificially low and inadequate to cover claims.
Losses from inadequate pricing and poor investment decisions have forced
many insurers either to withdraw from the malpractice market or restrict their
coverage.
It may
be that too little oversight and regulation of the insurance industry has led to
dramatic price increases and fluctuations in the availability of coverage,
leaving many providers without access to affordable coverage.
Of
course at issue today is also whether the prevalence and amount of jury awards
has been the cause of skyrocketing insurance premiums, and if that is the case,
one must ask: would limiting lawsuits be the solution?
NBCC believes that the better solution would be to limit the need for
lawsuits.
It is
also important not to become alarmist about reports that patients are having
difficulty in accessing healthcare due to medical malpractice rates.
While there may be incidents in some states where patients had difficulty
in accessing a provider, we have a responsibility not to suggest that the
problem is widespread relative to all patients in all states, until we have
conclusive information.
The
National Breast Cancer Coalition looks forward to working with Members of
Congress to address the issue of access to high quality health care for all
Americans. Attached for the record
is NBCC's position paper on our vision for quality health care, and a copy of
our recently published "Guide To Quality Breast Cancer Care".
Thank you for the opportunity to testify, and I'd be happy to answer
any questions.
Position
Statement
July
2002
Position
NBCC
has been fighting for access to quality breast cancer care since its inception
in 1991. Much of the debate over
the past decade has focused on how to deliver and finance health care, but we
believe this is a secondary question. Before
we can determine what system best delivers quality breast cancer care, we have
to first answer a more basic question: what is quality care?
NBCC believes that quality breast cancer care is a patient-centered,
evidence-based system of care that fulfills the following overlapping core
values: Access, Information, Choice, Respect, Accountability, and Improvement.
The
Problem
The
term "quality health care" is often used but rarely defined.
There is no national consensus on what makes breast cancer care
"quality" care. But even
without a precise definition, we know that breast cancer care in this country is
inconsistent and sometimes dangerously inadequate. Recent studies are revealing
the depth and breadth of the problem.
As
breast cancer activists, we know too well that the present health care
system-or rather, lack of a system-does not work for everyone. We believe
everyone affected by breast cancer should have full access to the best care
available, care that is based on sound scientific evidence and delivered in a
respectful and timely manner. This
is a far cry from reality.
We
also strongly support evidence-based medicine and know that more care is not
always better care. We do not want to waste our limited resources - or risk
our health or lives - on treatments that are based on little more than a hope. We deserve health care that works, and access to a wide range
of well-designed and efficiently run clinical trials that help us find better
treatments for breast cancer.
But
evidence-based care is just one part of quality breast cancer care.
Because we do not have a sure cure, breast cancer patients and clinicians
are often forced to make crucial choices with inadequate information.
Sometimes there are no best answers.
In such an uncertain and frightening environment, psycho-social concerns
become paramount.
For
these reasons, NBCC does not view quality care as simply a checklist of
procedures or a measurement of over-treatment and under-treatment.
Instead, our vision is of overlapping core values.
We believe the following six core values are the essential components of
quality breast cancer care: Access, Information, Choice, Respect,
Accountability, and Improvement.
Access
Comprehensive
affordable health care must be available to everyone. All patients must have access to coordinated care that is
user-friendly, culturally respectful, timely, and integrated both among and
within provider offices and systems.
Information
All
information must be accurate, timely, readily available, and disseminated in an
appropriate format. Health care
providers must offer clear information on the risks and benefits of all
treatment options, and the evidence and lack of evidence relating to each
option. They must encourage multiple opinions to assure the patient that the
provider's recommendation is appropriate.
There
must be transparent standards of evidence that explain what level of evidence is
acceptable and what happens in the absence of sufficient evidence.
Providers
and patients must be given time and resources to review evidence, and efforts to
review and synthesize evidence must be expanded so the system reflects current
scientific/medical knowledge.
A
national advocacy advisory panel should be established to work with advocates,
health literacy specialists, economists, and the public health community to
review evidence and help design effective methods for communicating health care
information to consumers, providers, and insurers.
Choice
Recommended
treatments must offer the best possible outcome consistent with patients'
personal preferences. Patient
preferences for information and involvement in determining the course of
treatment must be respected.
Patients
must have choices among a reasonable range of providers and treatment options,
including specialists and complimentary care with proven efficacy.
Respect
Care
must be patient-responsive and culturally respectful. Patients should feel comfortable asking questions, voicing
opinions, and being participants (at whatever level is appropriate for them) in
all health care decisions. They must have justified confidence in the experience
and training of health care providers and know that providers listen to them and
advocate on their behalf.
Patient
confidentiality is paramount, and patients must have assurances that it is
respected.
There
must be a system-wide emphasis on comprehensive care that respects patients'
fears, beliefs, culture, time, bodies, pain, decisions, and family members.
The system must enable patients for whom breast cancer is a chronic
illness to take care of themselves, avoid complications, and maintain their
quality of life. The system must
provide a wide range of services related to end of life issues for those dying
of breast cancer.
Accountability
There
must be national standards of quality care that are continually updated; every
aspect of care must meet these standards at all sites of care.
Services provided should be "needed and effective" as determined by a
decision-making body that includes consumers; the end result should be based on
democratically developed unambiguous criteria.
There
must be a well-designed and trusted grievance procedure that is clearly
articulated to patients and includes meaningful consequences for both system and
health care/insurer provider errors.
Patients
must bring health issues forward to their providers and accept the choices they
make for themselves. All providers
and patients must be accountable to our society for the responsible use of
health care dollars.
Improvement
There
must be an ongoing commitment to increasing the quality and quantity of
available evidence, especially regarding the causes and prevention of breast
cancer, and with an emphasis on learning from mistakes.
All patients must be fully informed of clinical trials for which they are
eligible, and there must be no financial barriers to participation in these
trials.
There
needs to be more creative and meaningful measures of quality, and more effective
ways of collecting and disseminating this information. Designing scientific
tools for measuring health care quality has, until recently, been the domain of
health services researchers. Breast
cancer survivors and activists bring a unique and crucial perspective to this
issue, and must be involved at every level of the quality breast cancer care
research process.
A
patient-centered evidence-based vision of quality must deeply permeate our
medical educational system, including continuing medical education, so both
current and future providers understand and appreciate their role in creating
quality breast cancer care.
Conclusion:
A Guide To Quality
The
specific methods and strategies for fulfilling these core values will vary, but
the core values themselves will not. Together,
they serve as a guide to design and evaluate quality health care public policy.
We believe that successfully incorporating all of these core values into
our health care system is the key to achieving quality breast cancer care.
About
NBCCF
The
National Breast Cancer Coalition Fund is a grassroots organization dedicated to
ending breast cancer through the power of action and advocacy.
The Coalition's main goals are to increase federal funding for breast
cancer research and collaborate with the scientific community to implement new
models of research; improve access to high quality health care and breast cancer
clinical trials for all women; and expand the influence of breast cancer
advocates in all aspects of the breast cancer decision making process.
The National Cancer Policy Board, in its report Ensuring
Quality Cancer Care (NIM/NRC, 1999), found that we do not have good
evidence about what constitutes good quality care.
But it concludes that our current cancer care "system" leaves a
substantial number of patients with far less than ideal care.
The RAND Corporation, in How
Good is the Quality of Health Care in the United States (RAND/RP-751,
1999), also notes the surprisingly small amount of systematic knowledge
available on the quality of health delivered in the United States. But based on existing data, it also concludes that there are
large gaps between the care people should receive and the care they do
receive. In Crossing
the Quality Chasm: A New Health
System for the 21st Century (IOM/NAP 2001), the Committee on
the Quality of Health Care in America concludes that quality problems are
everywhere and that the U.S. health care delivery system is in need of
fundamental change.
Printer
Friendly
Comment
On This Page
Related
Documents
|