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L. Shockney Articles

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.    

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.