Financial Resources —Did you know that there are many financial resources that can help people living with breast cancer? Find out more
Rally for the Cure — Golf, tennis, dinner events and so much more...
Go Passionately Pink to help save lives! — Just wear pink, have fun and raise money to fight breast cancer. Be inspired by the multitude of ideas right here, or think of your own. There are so many creative ways to have fun and fight breast cancer.
The history of Navigation: Where did it
come from? Part I Utilization Review
If we don’t know
where we’ve been we may not understand where we are now, much less know where
we are going. In the late 1970s and early 1980s the government decided to
implement major changes in how hospitals would be paid for providing inpatient
care. Health care expenses had been recognized as being out of control even
back then. Patients went to the hospital the day before their operation, spent
the night and stayed in for many days afterwards until the patient felt well
enough to go home. For a woman having a mastectomy, the average length of stay
was 7 days. This health care finance system was named Prospective Payment and
codes were assigned to each diagnosis and procedure. In term specific amounts
of reimbursement were provided based on the diagnosis (including
co-morbidities) a patient had and the procedures she underwent. This amount of
money and defined number of days allocated for the hospital stay was tied to a
specific DRG (diagnosis related group). When a patient exceeded that length of
stay in the hospital or maxed out on the dollar limit the hospital would be
allocated for her care based on this DRG her diagnosis and procedure codes were
grouped into, the hospital finance department knew that they would not be
receiving any additional money for the care they were providing to this
patient. There were some exceptions, such as specific complications or comorbid
conditions that a patient may have which could bump her up to a higher level
paying DRG, but the system was quite imperfect. If however the patient was
discharged prior to the designated number of days and/or the expenses
associated with her care was less than the DRG payment max, the hospital would
make additional profit.
As a way to
monitor this process, Utilization Review
was conducted. The definition
of Utilization Review (UR) is a process for monitoring the use and delivery of
services, especially one used by a managed care provider to control health care
costs. There were “UR nurses” employed by insurance companies to perform (retrospective)
medical record review and determine if there were inappropriate utilization of
hospital or professional resources. Such days of hospitalization that occurred
on weekends when radiology services
weren’t available or an extra night in the hospital because the patient didn’t
have someone available to drive them home were closely scrutinized. This was
especially an issue for patients needing transfer to a nursing home or rehabilitation
center. Patients commonly waited days or even as long as week to be discharged
to a lower level of care. Doctors and the hospital received “denial letters”
from UR departments at managed care organization or the organizations
overseeing Medicare and Medicaid (called Peer Review Organizations) informing
the doctor (and hospital) that certain days of care or tests that were
performed on the patient during her hospitalization would not be covered and it
was hard to persuade the verdict to be reversed. There were situations in which
patients were prematurely discharged from hospitals due to the realization they
have reached their DRG limit. Money became the driver rather than quality of
care. In an attempt to anticipate which patient’s records might result in the
issuance of a denial letter, hospitals employed UR nurses as well to perform
the same chart review task. These individuals would inform the finance
department of potential risk of financial loss based on their medical record
review. In some cases, the hospital UR department also sent letters to the
doctors informing them of the same and requesting that they explain why care
was delivered in a less than optimal manner. Bottom line was ,however, that the
patient had gone home and the doctor was now busy taking care of new patients.
His interest in explaining why the radiology department isn’t open on weekends
or why the patient requested to stay an extra day was the least of his current
worries. What was more concerning however was that there were situations in
which patients were prematurely discharged resulting in poor care being
provided. It clearly resulted in bad medical care. The tail was wagging the
dog.
Part II- Utilization Management
In the late
1980s, changed were made to this odd way of monitoring care and Utilization
Management was introduced. The
definition of
Utilization Management
is the evaluation of the
appropriateness, medical need and efficiency of health care services procedures
and facilities according to established criteria or guidelines and under the
provisions of an applicable health benefits plan. Though the overarching goal,
according to the government and managed care organizations was to help ensure
that patients were provided cost effective care, of high quality, delivered in
an efficient manner, and which was medically necessary, the relationship
between managed care organizations as well the government (PROs) overseeing
Medicare and Medical Assistance, still had an adversarial relationship with
doctors and hospitals. The mission was to avoid delays in treatment and delays
in discharge from the hospital for inpatients receiving care, no matter what
their disease or disorder was. DRGs were still the payment system. Insurance
companies invested large dollars in performing, in a concurrent manner, medical
record review while the patient was hospitalized. UM nurses monitored a
patient’s hospitalization to ensure each day was medically necessary, there
were no barriers to treatment or barriers to her being discharged to home or to
a lower level of care, and she had a good clinical outcome. (note I used the navigation word “barriers”)
Hospitals now employed their own UM nurses (many of whom were previously UR
nurses) to review the medical record documentation each day during the patient’s hospitalization and contact the doctor if there were any
barriers to treatment or to her discharge she identified. The most common
problem was lack of documentation in the medical records by the doctor to
justify medical necessity for her to be there on a given day in the hospital.
Keep in mind too that up to this point whether it was the UR process or the UM
process being followed, neither the
review nurses working for the outside or the nurses doing chart review
inside had any contact with the patient at all.
There were also situations in which the hospital UM nurse was
responsible to contact the insurance carrier’s UM dept each day and report in
on what specific care was being provided to the patient in order to justify her
staying in the hospital “one more day.” Quality of care was getting more
attention now however, and patient safety was starting to surface. PROs in
particular were monitoring care from a quality perspective, raising flags when
a complication would occur that was felt to be avoidable. Such instances could
result in the team of doctors and nurses coming to the hospital and conducting
focused reviews of specific patient populations. The war continued between
payers of care and the deliverers of care.
Part III Case Management
In the early
1990s some evolution to this process occurred yet again. Case management was
born. The definition and philosophy of
Case Management was quite
different than what had been conducted previously under the UR or UM program
models. Based on the needs and values of the patient and in collaboration with
all her healthcare providers, the Case Manager (again a role fulfilled by a
nurse) linked clients with appropriate providers, and resources through the
continuum of health and human services and care settings, while ensuring that
the care provided is safe, effective, patient centered, and delivered in an
efficient manner. Finally the patient was involved and the nurse involved with
the patient. The role went from adversarial to one of collaborative health care
professional and the case manager was considered a vital member of the
healthcare team taking care of the patient.
The case manager had hands on involvement with the patient and addressed
these barriers by ensuring tests happening in a timely manner, the patient was
educated about her disease and its treatment, consultations for planning the
next phase of care was arranged, the
team members involved with delivering the care were communicating with one another,
psychosocial and financial issues were addressed that might impact care or
delay it, and home care arrangements were made if a patient needed additional
medical care after discharge. A particular focus, initially, was on patients
with medical disorders who needed to be managed in a less expensive environment
(lower level of care)—either nursing homes, rehab centers, or at home with home
health care nurses or aides. Finally the health care system was no longer just
focusing on charts and dollars but were focusing on the patient. Granted, having
the patient’s hospitalization not exceed the DRG limit was important, but
greater emphasis was placed on improving efficiency in the care delivery
process, engaging the patient in her care, and carrying the management of her
care over into the outpatient setting.
There are even some who would say that case management and patient
navigation are the same thing. System barriers and individual patient barriers
to care were surfacing and beginning to be identified and managed in a
systematic way.
As time progressed and more and more care
became outpatient based, which was somewhat
better reimbursed and less expensive than inpatient hospitalization, the
focus needed to change once again in how care would be managed and monitored.
As you’re no doubt very aware, when a patient is in an inpatient bed today they
are very sick. Though utilization
management programs are still in operation, justifying medical necessity for
the patient staying in the hospital is rarely an issue today. And though more
and more care is delivered in a more appropriate healthcare setting, it remains
expensive and why the government and managed care organizations are continuing
to look at alternative ways of delivering care, as well as paying for it.
Part IV
Patient Navigation—it’s roots:
During the time
that utilization management was being established, attention was being paid to
issues associated with access to care. Dr. Harold Freeman, who coined the term,
patient navigation, brought to the attention of health care professionals some
important information that changed once again the how the delivery of health
care services, especially those for cancer care, would be conducted. The
central issue he identified and campaigned about was that patients face a
variety of barriers to standard cancer prevention information, screening,
diagnosis, treatment and follow up care that inhibit timely access to health
care services. These barriers include fragmentation of health care services;
lack of health insurance or underinsurance; provide-and patient-related
education barriers; communication barriers, particularly for patients who first
language is not English; inadequate transportation to medical appointments; and
missed appointment due to travel, child care, or employment barriers. Health disparities
arise when the delivery system does not provide access to timely, standard
cancer care to everyone who needs it. This was particularly evident among
racial/ethnic minorities, people of low socioeconomic status, residents of
rural area and members of other underserved populations. Working at Harlem
Hospital at the time, he implemented patient navigation to address this health
disparity issue. Note that now the spectrum of care was greatly broadened. Up
until now the focus had been on patients who were already familiar and “in” the
healthcare model, who had insurance coverage of some kind, and were undergoing
treatment for a disease or disorder that had already been diagnosed. Now the
focus would begin much sooner--- with routine screening, in the case of breast
centers, mammography screening. Navigators were responsible for educating the
community about breast cancer awareness and recruiting patients to come to the
mammography facility for screening and if needed diagnostic evaluation. The
goal of
Patient Navigation as Dr. Freeman defined it and which was also
adopted by the National Cancer Institute is to facilitate timely access to
quality, standard cancer care in a culturally sensitive manner for all
patients. Examples of navigation services included: facilitating communication
and information exchange for patients with a limited understanding of the
English language; coordinating care among medical service providers; and
arranging for financial support, transportation, or child care services. Navigators
under his model could be community lay persons or health care professionals.
Navigation was to span the period from cancer detection procedures (i.e.,
screening mammography) through cancer diagnostic test to completion of
treatment. This issue was just not one isolated to Harlem Hospital of course.
The Institute of Medicine (IOM) report, Care without Coverage: Too Little Too
Late, states that uninsured patient get about one-half the health care of
insured patients and consequently die sooner than insured patients, largely
because of delayed diagnosis. Another IOM report, Ensuring Quality Cancer Care,
cites concerns about lapses in care that can lower the chances of receiving
standard of care and compromise the quality of life and survival of cancer patients.
With the
transference of care from an inpatient setting to an outpatient setting, and
managed care dictating where a patient can have their treatment, more and more
of the burden of keeping the schedule straight, understanding the sequence of
care and treatment that lies ahead, and figuring out how to go from step 1 to
step 2, etc. rests on the shoulders of the patient. Whether the patient has cultural barriers,
financial barriers, racial barriers, etc, the health care system has become
incredibly complex. For someone diagnosed with a new cancer, figuring out what
happens next, what to expect, and how to ensure she is getting appropriate care
is overwhelming to accomplish without help.
Patients and their families are so scared and shocked by the diagnosis
that imagining they can navigate through decision making about treatment
options as well as actually receive the multimodality treatment in a reasonably
smooth way is viewed as nearly possible. So in the early 2000s the patient
navigator role was expanded to be utilized by all patients and not just those
who fit a specific underserved definition. This doesn’t mean to say that it’s
only been in the last few years that breast cancer patients have had someone to
help them along this journey. Technically, everyone involved in her care and
treatment has always had some role in navigating her along the decision
making/treatment pathway but this process has been fragmented without a way to
ensure that it really is happening. Each healthcare provider has focused on
their specific portion of care, not necessarily looking across the continuum as
the patient needs to have done. Having a designated person who is referred to
as a navigator has become a new buzz word in the last few years and
particularly popular in a breast center setting. Therefore the patient has
expectations of what such an individual can do for her once she has become
diagnosed with breast cancer. A strong focus
remains however on addressing the needs of the underserved, recognizing that their
need for patient navigation is the highest among all populations. The
President’s Cancer Panel (2001) reported on barriers including system barriers
(fragmentation of care), financial barriers (lack of insurance or
underinsurance), physical barriers (excessive distance from treatment
facilities), information and education barriers (both provide and patient
related), and the issues of culture and bias. Other barriers that were
identified that must be overcome include insufficient culturally sensitive information
and educational materials for cancer patients and their families; inadequate
transportation assistance to get to medical appointments; missed appointments
due to travel or childcare barriers; patients’ fiscal inability to take time
off from work for screening and wellness care; and failure of providers to
obtain patients’ medical test or laboratory results in a timely fashion.
Cultural and language barriers usually affect members of underserved
population. The cumulative effect of these barriers is unequal delivery of
cancer prevention services and delays in detection, diagnosis and quality
treatment of cancers. Many racial/ethnic minorities, people of low
socioeconomic status, residents of rural area and other underserved populations
facing such barriers simple give up out of frustration or misunderstanding and
drop out of cancer care services. This has resulted
in various navigation models being developed in cancer centers. there may be
navigators in a breast center for example who function similarly to that of a
case worker, helping to sheppard underserved women in for screening mammograms
and education about breast cancer and breast health. The case worker may be
physically located at an office outside of the breast center space itself.
Community based where she can reach the masses daily. This individual may
remain involved in a navigation role through her diagnosis or treatment or more
often might transition the patient over to another navigator (commonly a nurse)
whose focus is on the diagnosis portion or treatment portion of breast cancer
care. So your institution may be doing both types of navigation—pre diagnosis
and post diagnosis. As you see, these
functions are rarely done by the same person, with one being based in a
community setting having a liaison role with the breast center and the other
being based physically at the breast center. There are also breast centers that
have Mammography Technicians within their imaging facility who fulfill the role
of navigator from point of the patient coming in for her screening mammogram
through to the patient of her being diagnosed by having a biopsy done in breast
imaging. In April of 2008,
C-Change, a national cancer coalition comprised of key national leaders from
the government, business and nonprofit sectors, hosted an educational briefing
for members of Congress at the US Capital. C-Change is a national cancer
collaborative comprised of leaders from the public, private and not for profit
sections. The vision and mission of C-Change is to eliminate cancer as a public
health problem at the earliest possible time, by leveraging the expertise and
resources of its members. The organization strives to accelerate cancer
research, improve the timely access to the full continuum of quality cancer
care services and support State, Tribe and Territory comprehensive cancer
control efforts. (for more information go to www.c-changetogether.org) The Cancer Patient Navigation Act was
discussed. At this historic meeting, cancer patient navigation was discussed at
length and its importance in helping to ensure that cancer patients receive
patient focused care that is coordinated and of high quality. Patient navigation was referred to as the
individualized assistance offered to patients, families and caregivers to help
overcome health care system barriers and to facilitate timely access to quality
medical and psychosocial care from pre-diagnosis through all the phases of the
cancer experience. Navigators guide a patient through the physical, emotional
and financial challenges that come with a cancer diagnosis. The Cancer
Navigation Act which was signed into law in June 2005 proposing $25 million
over 5 years for demonstrating programs to provide navigator services to improve
health outcomes. C-Change and other cancer leaders asked for the full
$25million in funding of the Act in FY 09.
So you now can
see where navigation began—through retrospective chart review in an adversarial
environment—to now being a collaborative process that involves the patient and
everyone who takes care of that individual. We’ve come a long way—finally
addressing the needs of the most important thing of all—the patient. Oncology Nurse Navigator’s Role in Clinical Trial Assessment and
Recruitment In order to have improvements in
the diagnosis, treatment and prevention of cancer, we are dependent on patients
participation with clinical trials. Clinical trials paves the way to the
development of innovative medicine that can reduce mortality, minimize side
effects, improve quality of life, and carry us into the future for evidence
based medicine. Getting a patient to participate
in a clinical trial can be complex. Understanding what the potential barriers
are to participation by your patient is fertile ground for you as an oncology
nurse navigator to help address. The goal is to increase patient participation
as well as ensure the patient is well educated about the purpose of the study
and believes in the value of his/her own participation. Participation doesn’t
mean that this specific patient benefits either; its making sure that the
patient understands their contribution in the creation of improved treatments
for future patients who are diagnosed long after her treatment takes place. Examples of barriers to clinical
trials participation: 1. Loss
of decision control – the patient doesn’t want to be randomized. They feel
strongly about the desire to be in a specific arm of the study. 2. Fear
that this is too experimental--- the guinnie pig syndrome 3. Not
being made aware that they are even a
candidate for a clinical trial 4. Too
many additional appointments/steps needed that will impact their work schedule
or other personal commitments 5. Too
invasive (blood draws, extra biopsies,
etc) 6. Finding
the consent form too complicated and intimidating 7. No
personal benefit gained, they believe, by participating. 8. Insurance
won’t approve their participation (drug therapies for the study not covered) 9. Family
members request that the patient not participate 10. Too much travel involved to participate Lots of barriers. But of course
barriers is what you live and breathe! So consider as part of your role in
navigation, also being well versed on the clinical trials criteria of each
study that is active at your facility for the patient population you navigate.
By doing so, a brief (but important) clinical trials discussion can take place
early on in your initial discussions with the newly diagnosed cancer patient. This includes assessing the patient for
possible barriers (like some listed above) that may be able to be eliminated
once you are able to identify them and address them as part of your navigation
efforts. Additionally, by being an active
participant in the screening and recruitment process for specific clinical
trials, part of your salary may be able to be covered through the grant that is
funding the study. This is an attractive option to leadership, when part of
your salary can be offset through other funding mechanisms. At the same time
the principal investigators of the study are able to recruit more patients and
at a faster pace. Though financial support may be perhaps only 1-2% of your
time being covered, if you have 15 research studies open, then that equals
15-30% of your salary being paid for by grant support and not having to come
out of your breast center budget. If you feel like it would be too
overwhelming to screen patients for clinical trials, consider 2 options: 1)
using navigation software (like Priority Consults) that allows you to entire
the clinical trial criteria into the software thus having the computer flag the
patient for you to consider approaching for participation; 2) request that your
faculty prioritize which clinical trials are of highest priority to fill first
and focus specifically on them. If you aren’t currently participating
in clinical trials screening and recruitment, consider meeting with your
faculty to discuss this further. Remember too this becomes a new measurement
for you. Get baseline data as to the # of patients who are currently
participating in clinical trials for your patient population. Then re-measure
it 6 months later once you become an integral cog in the wheel of screening,
assessment, recruitment and education of the patient. Remember, your work aggregately is furthering
the scientific work needed to improve treatments for your patients you take
care of in the future. A worthy goal for us all. L. Shockney Articles
Treatment Summaries and Survivorship Care Plans—Who is Responsible for Ensuring They are Used?
Though there are expectations of oncology providers to create a detailed treatment summary of the cancer patient’s treatment as well as document a survivorship care plan to be followed, going forward, there isn’t a clear sense of who is to do what and how all of this is to happen. A piece of paper is, well, a piece of paper. Without a structured, consistent method of creating these documents, disseminating them to the correct providers, and conducting follow up to ensure they are followed, they have no true value.
There also remains disagreement among oncologists and PCPs out in the community who is the medical professional really qualified to be following up and monitoring cancer survivors long term. Add to this that no published studies have been conducted yet demonstrating that these documents benefit patients, has resulted in confusion and delay in the development and implementation of such survivorship programs. Regulators however have incorporated into their standards that such documents are to be in place and demonstrated when surveys are conducted by the American College of Surgeons who accredit cancer centers and cancer programs.
Historically, when a patient received a diagnosis of cancer, the patient’s PCP referred their patient to an oncology specialists with the expectation that the patient remain permanently under the oncologist’s care. Due to the shortage of oncology specialists (projected to be between 41-48% deficit by the year 2020), and the steadily growing population of cancer survivors, we know that retaining a cancer survivor long term by an oncologist is no longer realistic or practical. A study conducted at the Lombardi Cancer Center with PCPs being surveyed showed some interesting results that impact the ability to transition patients from the oncology team back to their PCP. These results were:
<60% of PCPs agreed that they possessed the skills necessary to care for treatment effects in cancer survivors (focusing in this survey on breast and colorectal cancer patients.)
<50% of PCPs felt very confident in their knowledge of testing for recurrence or caring for the psychosocial effects of cancer.
23% of PCPs reported feeling very confident in their ability to care for the late phsycial effects of cancer or its treatments.
Only 38% of oncologists agreed that PCPs have the skills necessary to initiate the appropriate screening or diagnostic work ups to detect recurrence breast cancer
25% of oncologists strongly of somewhat strongly agreed that PCPs possess the skills necessary to provide follow up care related to the effects of breast cancer or its treatment.
Many institutions are working to develop a shared care model for survivorship care. Survey questions associated with this model reflected the following results:
38% of PCPs preferred it compared to 25% of PCPs who felt the oncologist should be the primary responsible doctor for follow up survivorship care; 10% of PCPs preferred a PCP led model.
On the flip side, 57% of oncologists preferred an oncologist led model; 16% preferred a shared care model and 2% preferred a PCP led model.
When asked questions regarding the management of late effects from cancer treatment, 23% of PCPs and 77% of oncologists felt very confident in their knowledge of how to manage these patients.
85% of oncologists stated they were very confident about ordering appropriate tests for detecting recurrence of disease where as only 40% of PCPs had the same confidence level.
Perhaps the most telling survey results are the following:
Many oncologists expressed less confidence in PCPs than the PCPs themselves. 75% of PCPs believed that they have the skills necessary to initiate appropriate screening or diagnostic workups for detecting recurrence of breast cancer where as only 38% of oncologists thought the PCP would know what to order and how to evaluate for such a medical problem. And when it came to psychosocial issues, oncologists felt they were the most qualified to address these issues for patients (51%) compared to the skill set of a PCP (8%)
Why is this type of survey data important? Because if the providers of care for cancer survivors lack faith in one another it will be incredibly difficult for them to successfully implement a survivorship program together—under any model, shared care or otherwise. This means that the treatment summary and survivorship care plan is not going to be a living document used for determining who is to do what, when, how and for how long but instead merely pieces of paper that get filed into the medical records of cancer survivors.
What can you do as a navigator? Conduct a different type of barrier assessment- this time being on the Perhaps a lot of the problems providers are facing on both sides of the equation (oncologists and PCPs) is fear of the unknown. The oncologist doesn’t want to relinquish control of his/her cancer patients. At the same time the PCP doesn’t feel comfortable assuming oncology care responsibilities that previously were never on their plate. Steps to be taken then include the following:
1. Start with a specific type of cancer population—commonly breast cancer due to it being a large volume diagnostically with a high survival rate overall.
2. Hold a meeting with the oncology faculty for that patient population and discuss :
a. Their understanding of the need for a treatment summary and survivorship care plan for their patients
b. Their comfort level in transitioning their patients back to the patients’ PCPs in the community, and the timing of this transition (commonly based on stage of disease, treatment received and prognostic factors)
c. The creation of an educational program for PCPs in your community so that they have an opportunity to learn from your oncology team how to care for patients with a history of specific type of cancer. This should include the importance of not overutilizating healthcare resources by doing routine staging work ups which are no longer standard of care.
d. Create a team that includes yourself, a few willing oncologists and interested PCPs in creating a treatment summary and survivorship care plan documents that address the needs of the care team and the patient. (for example, PCPs want to know what they are responsible to do. Giving them a lot of details about the number of rads a patient received to the left breast may not be useful; telling them to monitor the patient for potential brittle rib bones in the radiation field and possible heart issues as delayed side effects is what is important for the PCP to know.)
e. Document who is responsible for what—who will order the patient’s mammograms? Address side effects from hormonal therapy? Make sure she gets her annual flu vaccine? Without a crystal clear picture, there is risk of assumptions being made and no one doing what needs to be done on behalf of the patient.
f. Determine as a team what the expectations will be of their mutually shared patients too.
g. Determine how this new program will be assessed for its successfulness. (this will likely involve your expertise in following up to ensure patients kept their appts, got their appropriate screening, and is following recommendations made regarding their ongoing survivorship care.)
h. Pilot with 10 or less patients a transitional shared care model and follow up with feedback from all faculty involved. Buy in is key to the success of this program
i. Also obtain feedback from the patient what she felt helpful, what was not, and from her perspective what she still needs to feel confident and have assurance that her care is coordinated.
Once you have a survivorship care program that is functioning well within one specific patient population, you are then ready to take on another patient population that is high volume with a large number of survivors. Without this type of planning and coordination, you run a risk of these documents being merely added paper to a medical record with no benefit achieved for your patients.
Still having difficulty getting everyone to work together and communicate? As time progresses, oncologists will simply not be able to have their clinics primarily filled with long term follow up. They will be inundated with the need to see more newly diagnosed. This type of pressure will force the issue and they will need to relinquish control of their cancer survivors from their direct oversight and rely more on other providers to monitor them long term. The goal? That their cancer survivors will never “need” the oncologist’s skills again.
![]() |