8
CJON\NRnmG MENTORSHIP PROGRAM ARTICLE Bridging the Healthcare Divide With Patient Navigation: Development of a Research Program to Address Disparities Karen A. Schwaderer, RN, BSN, OCN^^, and Joatine K. Itano, RN, PhD, OCN® Americans who live in poverty as well as certain ethnic and racial groups have higher cancer death rates than other populations. Patient navigators have been identified as an important weapon against these disparities. Navigators can address insurance, financial, and logistical issues (e.g., transportation, appointment scheduling, child or elder care). They can provide understandable health education that may lessen fears of cancer diagnosis and treatment. This article describes the development and implementation of a multisite patient navigator program involving five cancer institutions in Western Pennsylvania. Navigator programs have great potential to enhance cancer care by reaching underserved populations and opening the door for future research. A great deal of progress has been made in recent de- cades in the war on cancer. Technologic advances in screening and early-detection techniques, along with new treatments, have changed a previously dim outlook for many patients with cancer. Unfortunately, not all populations have benefited from this progress, with certain groups of Americans carrying a heavier burden of cancer than others. Americans who live in poverty and specific ethnicities, par- tictilarly African Americans, have 1()%-15% lowerfive-yearsur- vival rates than other populations (Freeman, 2004). According to Ward et al. (2004), male and female residents of counties in which at least 20% live below the poverty level (i.e., the thresh- old of income that varies by household size) have 13% and 3% higher cancer death rates, respectively, compared with counties in which less than 10% live below the poverty level. Lower socioeconomic status, cultural beliefs, and social inequity can cause disparities among ethnic groups; however, poverty is the most important cause of disparities in Americans. Living in poverty often means residing in low quality housing, making unhealthy lifestyle choices, and lacking knowledge about healthcare resources (Freeman, 2004), Lack of insurance and financial support as well as decreased access to health care prevent many Americans from receiving the preventive screenings and cancer treatments necessary- to survive cancer (Freeman, 2()0i). Some populations" cultural beliefs may create feelings of mistrust toward the healthcare system, and language differences may cause misunderstandings of medical terms. 1-or Americans living in rural areas, geographic access and lack of transportation to community facilities may impede individuals Irom receiving appropriate cancer treatment. At a Glance Patient navigation is a new concept in which trained per- sonnel assist patients with cancer with access to care and impact outcomes. Barriers to care are comparable for rural and urban facili- ties, but the time to resolve barriers differs according to the community resources available. Patient5 and physicians report satisfaction with the use of patient navigators. However, the impact of patient naviga- tion on clinical outcomes and its cost-effectiveness warrants further investigation. African Americans comprised 13% of the U.S. population and 24% live helow the poverty level (American Cancer Soci- ety, 2007). Thirty-three percent of working-age African Ameri- cans were uninsured in 2005 compared to 20% of Caucasians Karen A. Schwaderer, RN, BSN, OCN®, is the director of patient naviga- tion and clinical services at the University of Pittsburgh Medical Center at McKeesport in Pennsylvania; and Joanne K. Itano, RN, PhD, OCN®, is an associate professor of nursing and the director of academic planning and policy at the University of Hawaii in Honolulu. The authors were participants in the 2006 ClinicalJoumal ot Oncology Nursing W\i\nq Mentorship Program. Schwaderer's employment is funded by the Na- tional Cancer Institute (grant #5U56CA105486). (Submitted October 2006. Accepted for publication December 3, 2006.} Digital Object Identifier: 10.1188/07.CJON.633-639 Clinical Journal of Oncology Nursing • Volume 11, Number 5 • Development of a Research Program to Address Disparities 633

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Page 1: Bridging the Healthcare Divide With Patient Navigation ...Bridging the Healthcare Divide With Patient Navigation: Development of a Research Program to Address Disparities Karen A

CJON\NRnmG MENTORSHIP PROGRAM ARTICLE

Bridging the Healthcare Divide With Patient Navigation:

Development of a Research Programto Address Disparities

Karen A. Schwaderer, RN, BSN, OCN^̂ , and Joatine K. Itano, RN, PhD, OCN®

Americans who live in poverty as well as certain ethnic and racial groups have higher cancer death rates than otherpopulations. Patient navigators have been identified as an important weapon against these disparities. Navigators canaddress insurance, financial, and logistical issues (e.g., transportation, appointment scheduling, child or elder care). Theycan provide understandable health education that may lessen fears of cancer diagnosis and treatment. This article describesthe development and implementation of a multisite patient navigator program involving five cancer institutions in WesternPennsylvania. Navigator programs have great potential to enhance cancer care by reaching underserved populations andopening the door for future research.

Agreat deal of progress has been made in recent de-cades in the war on cancer. Technologic advancesin screening and early-detection techniques, alongwith new treatments, have changed a previously dim

outlook for many patients with cancer. Unfortunately, not allpopulations have benefited from this progress, with certaingroups of Americans carrying a heavier burden of cancer thanothers.

Americans who live in poverty and specific ethnicities, par-tictilarly African Americans, have 1()%-15% lower five-year sur-vival rates than other populations (Freeman, 2004). Accordingto Ward et al. (2004), male and female residents of counties inwhich at least 20% live below the poverty level (i.e., the thresh-old of income that varies by household size) have 13% and 3%higher cancer death rates, respectively, compared with countiesin which less than 10% live below the poverty level.

Lower socioeconomic status, cultural beliefs, and socialinequity can cause disparities among ethnic groups; however,poverty is the most important cause of disparities in Americans.Living in poverty often means residing in low quality housing,making unhealthy lifestyle choices, and lacking knowledgeabout healthcare resources (Freeman, 2004), Lack of insuranceand financial support as well as decreased access to healthcare prevent many Americans from receiving the preventivescreenings and cancer treatments necessary- to survive cancer(Freeman, 2()0i). Some populations" cultural beliefs may createfeelings of mistrust toward the healthcare system, and languagedifferences may cause misunderstandings of medical terms. 1-orAmericans living in rural areas, geographic access and lack oftransportation to community facilities may impede individualsIrom receiving appropriate cancer treatment.

At a Glance

• Patient navigation is a new concept in which trained per-

sonnel assist patients with cancer with access to care and

impact outcomes.

• Barriers to care are comparable for rural and urban facili-

ties, but the time to resolve barriers differs according to the

community resources available.

• Patient5 and physicians report satisfaction with the use of

patient navigators. However, the impact of patient naviga-

tion on clinical outcomes and its cost-effectiveness warrants

further investigation.

African Americans comprised 13% of the U.S. populationand 24% live helow the poverty level (American Cancer Soci-ety, 2007). Thirty-three percent of working-age African Ameri-cans were uninsured in 2005 compared to 20% of Caucasians

Karen A. Schwaderer, RN, BSN, OCN®, is the director of patient naviga-tion and clinical services at the University of Pittsburgh Medical Centerat McKeesport in Pennsylvania; and Joanne K. Itano, RN, PhD, OCN®, isan associate professor of nursing and the director of academic planningand policy at the University of Hawaii in Honolulu. The authors wereparticipants in the 2006 ClinicalJoumal ot Oncology Nursing W\i\nqMentorship Program. Schwaderer's employment is funded by the Na-tional Cancer Institute (grant #5U56CA105486). (Submitted October2006. Accepted for publication December 3, 2006.}

Digital Object Identifier: 10.1188/07.CJON.633-639

Clinical Journal of Oncology Nursing • Volume 11, Number 5 • Development of a Research Program to Address Disparities 633

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(Doty and Holmgren. 2006). In addition, African Americansare more likely to be diagnosed with cancer at a later stagethan Caucasians (American Cancer Society). Socioeconomicfactors may deter African Americans from using preventivebehaviors and seeking cancer screening services. In Pennsyl-vania, where this article's program was implemented, the age-adjusted cancer mortality rate for African Americans showedan overall decline from 1992-2002; however, the cancer deathrate for African American residents was 31% higher than thatof Caucasian residents in 2003 (Pennsylvania Department ofHealth, 2005).

A minority group for which little cancer data are available isthe Amish, a religious secular group. The largest Amish com-munities are interspersed throughout Ohio, Pennsylvania, andIndiana. A PtibMed" database searcb for cancer statistics amongthe Amish revealed three articles, with the most recent onepublished in 1988(Hamman, Barancik. &Lilienfeld, 1981; Swift,Reitnauer. Morrell, & Chase, 1987: Trover, 1988). Typicallyknown for their plain, simple lifestyle, the Amish have religiousand cultural beliefs that prevent them from seeking instiranee,tiiedicai care, and traditional cancer treatments. Altliough onesurvey reported that the Amish have a lower incidence rate ofcancer than non-Amish, the disease still exists in this commu-nity (Ferketich, MacEachern, Shen, & Lemeshow. 2003)-

Because healthcare disparities are so prevalent in rural poorand minority communities, including African Americans andthe Amish, a program was designed to address those disparitiesin Western Pennsylvania. This article describes the program'sdevelopment.

Evolution of the Patient NavigatorConcept

A simple concept to assist disparate populations in receivingtimely cancer care has gained national attention since it wasconceived in the early 1990s by breast cancer surgeon, HaroldFreeman, MD, from Harlem Hospital in New York, NY. Freemannoticed that young African American women with breast cancerfrequently were diagnosed with late-stage disease and beganto examine the access-to-care barriers that the women faced(Hede, 2006). Freeman provided the women with a navigator,a person who was skilled in using community resources toremove barriers. As a restilt. the tirst patient navigator programwas initiated, providing patients with a contact who couldhelp them to navigate their way through a complex healthcaresystem.

Patient navigators are important weapons against the dis-parities that certain groups of Americans face (Dohan & Schrag,2005). Navigators can assist patients with insurance, financial,and literacy issues as well as misinterpretations that may con-tribute to fears of cancer diagnosis and treatment. Logisticalproblems sucb as transportation, appointment scheduling, andchild or elder care issues alst) may prevent patients from seekingdiagnostic tests or treatment. Removing those barriers may helppatients seek and access the medical care they need.

Since Freeman s inaugural patient navigator program, morethan 200 cancer programs throughout the United States haveincluded some form of patient navigator concept (Hede, 2006).

Navigator programs have been instituted throughout the cancercare continuum (i.e., prevention, screening, treatment, and sur-vival) (Dohan & Schrag, 2005). Some programs' navigators arelay community members, whereas others arc professional nurs-ing or social services staff. Programs can be disease or popula-tion specific (e.g., breast cancer awareness in outreach effortsfor African American women, a clinic-based navigator whoassists newly diagnosed Native American patients). Althoughmany programs exist, patient navigation is understudied anddocumentation of the cost and effectiveness of patient naviga-tion is inadequate (Dohan & Schrag).

Cancer Disparities Research PartnershipThe National Cancer Institute (NCI) recognized inequality in

the burden of cancer and committed itself to researching andreducing cancer care disparities. As a result, in 2002, the NCI(n.d.) Center to Reduce Health ("are Disparities established apatient navigator program that provided a cooperative planninggrant to the Cancer Disparities Research Partnership (CDRP).The CDRP. in turn, provided grant funding to six communityinstitutions-* across the United States to confront the unequalburden of cancer within underserved populations. The com-munity hospitals were challenged to develop patient navigatorprograms that addressed the frequency in which disparitiesoccurred, the treatment that disparate populations receive, andthe treatment outcomes of minority and low socioeconomicgroups in their communities. Traditionally, grant funds weregiven to academic and university settings to filter programs tooutlying communities lhat surrounded their service area; fund-ing community institutions that actually provided the care fortheir neighborhoods instead of academic settings was a novelapproach (NCI, n.d.).

Of the six community hospitals selected to participate in theCDRP initiative through a competitive process, two were fund-ed in 2002 and four others received funding in 2003. Only one ofthe six awardees was a collaborative effort of multiple bospitalsserving the rural and urban areas surrounding Western Pennsyl-vania. The other five awardees were single institutions.

Disparities in Western PennsylvaniaWestern Pennsylvania once bustled with steel mills and in-

dustry. Most of the mills have closed, leaving a portion of thepopulation poor and of lower socioeconomic status. Accordingto the Pennsylvania Department of Health (2005), all five areasin Western Pennsylvania targeted for this study (i.e., Somerset,Johnstown, New Castle, and two urban Pittburgh areas) havehigher unemployment percentages than the state average of5.6%. Pennsylvania has experienced an increase in annualage-adjusted cancer incidence rates compared with nationalaverages and mortality rates. In 2005, the age-adjusted rate for

" The six institutions were Rapid City Regionai Hospitai in South Dakota.Laredo Medicai Center in Texas, Centineia Freeman Regionai Medicai Cen-ter in Caiitornia, New Hanover Regionai Medicai Center in North Caroiina,Singing River Hospitai in i\/lississippi, and the University of PittsburghMedicai Center at McKeesport.

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total deaths in Pennsylvania was more than 33% for AfricanAmericans compared to Caucasians (Pennsylvania Departmentof Health, 2006). Rural areas surround the Western Pennsyl-vania city of Pittsburgh, giving rise to different access-to-cart-issues than inner city urban dwellers. Of the three targetedrural areas (i.e., Johnstown. Somerset, and New Castle), U.8%of the population s income was below the state poverty level(10%) (Pennsylvania Department of Health, 2006). Small com-munities of Amish reside in the rural regions of two institutions,creating a spectrum of cultural diversity in the service areapopulations.

Radiation Oncology CommunityOutreach Group

Funded by the CDRP in fall 2003. the University of PittsburghMedical Center at McKeesport collaborated with another urbanand three rural hospitals in Western Pennsylvania that spannedfour healthcare provider systems. The collaboration was calledthe Radiation Oncolog> C(>mmunit>' Outreach Group (ROCOG).One of the urban hospitals, the University of Pittsburgh Medi-cal Cxnter at McKeesport, was designated as the lead hospital.HOCOG was charged by the CDRP with developing programs toincrease participation, especially among minorities, in clinicaltrials as well as developing a patient navigator program to reduceor eliminate the barriers that patients in Western Pennsylvaniaencounter when trying to navigate the healthcare system.

FirstYear of Funding

The grant proposal to NCT stated that, in addition to provid-ing resources to underserved patients with cancer, the ROCOGnavigator program wtnild research its cost-effectiveness andimpact on clinical outcomes. To achieve that goal, the navigatorprogram was implemented in multiple phases. I'wo of the fiveinstitutions (ons urban and one rural) initially began patientnavigation and collected data about the program s impact forcomparsion with data from patients at the other three institu-tions who had received treatment without the services of anavigator.

The grant team began its planning year by building the in-frastructure for research projects within a community hospitalthat hatl no previous grant activity. In addition to the planningand preparation for oftice space and reporting mechanisms,infrastructure was des^ned to access the NCI funds.

In the tirst year of funding, personnel were hired and pre-pared for the newly developed patient navigator role. Twonavigators who each had a bachelor of science degree in healthscience and previous experience from internships and qualityassurance management were hired as tumor registrars with anexpanded job description that included navigator functions; oneworked in the rural institution, and the other worked for theurban institution. Tlie ROCOG navigator program was designedto enhance early access to the healthcare system for patientswho were identified as high risk of not receiving or completingtreatments because of significant financial and societal barriers.Early entry would allow oncology nursing personnel to providethe teaching necessary tor patient participation and understand-ing of the prescribed treatment plan. Policies that would guide

and direct the navigator functions and the mechanism to trackinterventions and outcomes were developed during the plan-ning phase.

The navigators were trained in the institution s tumor reg-istry system to achieve early access to the patients. Access tothe patients became a collaborative effort between the naviga-tors and managing physicians. Within five days of receiving apathology report diagnostic of cancer, the navigators wouldassess patients' risk level by reviewing insurance, financial,and demographic information. Patients undergoing any cancertreatment who had inadequate healthcare coverage, were age80 or older, lived in known lower socioeconomic areas, orwere non-Caucasians were considered for the program. Thenavigators contacted the managing physicians for approval toapproach patients about the program. The policy for recruit-ment also included referrals from physicians who identifiedpatients with barriers who were not located through the tumorregistry system. The policy included a self-referral system;therefore, a brochure describing the program, along withnavigator contact information, was developed. The brochuresand self-addressed, prestamped envelopes were available inmedical and oncologic clinics and physician offices. The physi-cian and self-referral concept was deemed compliant with theHealth Insurance Portability and Accountability Act (HIPAA)when reviewed by the institutional review board (IRB) at alllocations.

Physicians who made a high number of cancer center refer-rals were identified by the navigator and oncology staff. Therural navigator met with 30 individual physicians' offices andtheir staff in meeting presentations and one-on-one sessions toinform them about the program. The urban navigator met with3 low-income clinics and 10 private physicians' offices. Thegeneral response regarding the program from office staff andphysicians was positive.

The need for a community resource directory; specific for theparticipating institutions, was identified early in the planningyear. The original resource guide began as a hard copy, but astime lapsed, Internet guides became more useful. New agen-cies were identified to assist patients, so the navigators sharednewfound resources with one another. Care was taken to ensurethat credible companies and resources were used by checkingBetter Business Bureau records and by word-of-mouth recom-mendations from trusted sources.

Because of the different cultures located within the ROCOG.service area, cultural diversity training for the navigators was animportant priorit>\ The Oncology Nursing Society (2000) Mul-ticuitural Tool Kit was used in the development of a diversitytraining manual specific to the cultures within the target regionto assist the navigators in delivering culturally sensitive patientguidance. The manual was delivered by the navigator managerin a two-hour didactic session with the navigators. The culturalissues of African American, rural poor, and Amish populationswere emphasized in the program.

Evaluation Process

One of the unique aspects of the ROCOG gram navigator pro-gram was the evaluation process. The navigator program wasdesigned with a priori ideas about how patient outcomes could

Clinical Journal of Oncology Nursing • Volume 11. Number 5 • Development of a Research Program to Address Disparities 635

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be influenced. A logic mode! was developed to communicatethe hypothe.ses and evaluate whether the program met tho.seobjectives (see Figures 1 and 2).

A computerized database that was HIPAA and IRB compliantwas developed to house patient demographic and diagnosticinformation as well as physician contact information. It also in-cluded the barriers to care identified by patients and navigatorsand the interventions used to resolve those issues. The numberof attempts to contact patients was recorded. The time naviga-tors spent dealing with patient access issues was recorded as animportant measure in the evaluation process. The database alsohad a section for navigators to document notes about patientsand the services they required. The content in the database wasmainained by the navigators.

The database was later revised, adding a section for docu-menting the annual f{)ilow-iip. which was built in to the navi-gator procedures. In the annual follow-up (i.e., the navigatorscontacted patients by phone), information about the patient'shealth was requested as well as the treatments completed.

The navigators were required to complete a separate NCI da-tabase of patient activity and report any participation in clinicaltrials. NCI personnel conducted a training session to educate thenavigators on data entry. The navigator manager completed pe-riodic data entry verification checks on the information enteredby the navigators and reported to ROCOG to ensure data ac-curacy. For purposes of evaluation, the database contents werecollected every three months by a HIPAA-compliant third partywho removed all identifying information prior to analysis.

Before the navigator program was implemented, IRB approvalwas required because data were collected about human sub-jects and the outcome results were to be published. The leadinstitution, the University of Pittsburgh Medical Center at McK-eesport, was required to seek initial IRB approval, even though

Potential Short-Term Outcomes

• For patients

- Barriers to treatment are identified.

- Environmental and miscellaneous barriers are removed.

- Patients are more likely to get to treatment.

- Patients are more likely to get medication.

- Patients are motivated to seek treatment because barriers are

removed.

- Patients are referred to support groups.

• Hospital gets more reimbursement because

- More patients are on Medicaid,

- The hospital does not assume costs.

• The community and population are more informed about cancer screen-

ing and detection.

Potential Intermediate Outcomes

• Patients are more likely to adhere with the full course of treatment and

medication.

• Clinical trial enrollment increases over baseline.

Potential Long-Term Outcomes

• Five-year survival is greater for those assisted by a navigator.

Figure 1. Radiation Oncology Community OutreachGroup Navigator Program: Potential Outcomes

Data Sources

• Patients

• Hospital records

- Navigator database

• Community databases regarding outreach

• Tumor registry data

One-Year Follow-Up

• Patients self-report regarding adherence.

• Sample hospital records to validate patient self-report compliance.

Annual Follow-Up

• Determine whether patients died with disease, died without disease,

are alive with disease, or are alive without disease.

Figure 2. Study Measures and Indicators

the program was being implemented in two other hospitals.After initial approval was obtained, each individual communityhospital could seek approval through their respective IRBs. Theapproval process was one of the biggest challenges that theROCOG staff faced during the planning year. The group allottedfive months for completion of the process in all institutions sothat the navigator program could be implemented in September2004. However, the arduous process of completing submissionsand making corrections to accommodate the requirements ofthe TRB was not anticipated. Fortunately, progress was madewhen the ROCOG grant staff began to work collaboratively withthe IRBs in a proactive approach instead of responding to theircomments. All patient brochures and consents were reviewedfor accuracy and compliance with human subjects' protection.The lead institution s IRB approval came six months after theprocess began, after which the program was submitted to theindividual institutions for approval. That process took less time(i.e., three months) but delayed the start of the program by threeto four months.

ResultsThe navigator program was implemented in the rural hospital

in January 2005 and the urban hospital in February 2005; howev-er, early in the program, enrollment in the rural setting requiredmore time because of the greater distance between the navigatorand collaborating physicians. A random sample showed that 80%of the patients initially enrolled in the urban setting consentedto the program within three days of eligibility determinationcompared to 45% of patients in the same time in the rural setting.Thirty percent of the rural patients consented 20 days or moreafter eligibility was determined, whereas the remaining patientsin the urban setting consented in 7-10 days.

Physician and patient satisfaction surveys were completed atthree months, then annually. The satisfaction surveys includeda five-point Likert scale that addressed specific navigator func-tions as well as results of interactions and a section for writtencomments. Using a scale of 1 (agree) to 5 (disagree), patientsand physicians were asked to indicate how much they agreedor disagreed with statements regarding the services providedand overall concept of the navigator. All completed and returned

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physician and patient satisfaction forms were favorable on theLikert scale. Written comments showed favorable responses tointeractions with the navigator. One survey included one unfa-vorable comment regarding the need for additional blankets inthe radiation oncology department.

During the initial 17 months of implementation, the navigatorprogram in the rural and urban settings assisted al! 174 patientsnewly diagnosed with cancer. A greater number of AfricanAmericans were assisted in the urban facility (n = 34, 32.1%)compared to 14.7% in the rural facility (n = 10). The rural facil-ity treated two Amish patients during the first year, and onechose to participate in the navigator program. The distributionof health insurance varied between urban and rural hospitals.More urban patients were enrolled in government-sponsoredprograms (Medicare = 38.7%, Medicaid = 31.1%). A higherpercentage of patients in the rural facility (26.5%) paid for theircare out of pocket compared to 21.7% in the urban facility (seeFigure 3).

The main barriers identified in the rural and urban facilitiesrelated to inadequate insurance coverage, transportation issues,and high co-payment for prescription coverage (see Figure 4).Although more requests for transportation were made in theurban area, more time was spent on resolving the harrier inthe rural setting. For example, on average, the navigator spent57 minutes on a request for transportation in the rural facilitycompared to 27 minutes for the urban navigator to complete thesame request, This finding indicates a direct correlation withthe amount and type of resources that are available for use bythe navigator. In the rural facility where public transportationis infrequent or nonexistent, providing services was more timeintensive for the navigator to overcome the barriers. In fact,except for end-ot-life care, all services provided by the navigatortook longer for patients in the rural setting (see Figure 5).

After U months of data collection from the initial institu-tions, the navigator program was rolled out at the second ur-ban hospital. Plans were made to include another rural hospital

401

Private Medicare Medicaid

Type of Health InsuranceSelf-pay

Rural facility (n = 68) • Urban facility (n = 106)

Note. Data are from the first 17 months of the study.

Figure 3. Distribution of Patient Health Insuranceat Time of Entry Into the Navigator Program

Insurance Transportation

Primary Barriers

Co-payment

I Rural facility (n = 68)

Note. Data are from the first 17 months of the study.

Figure 4. Patient-Identified Primary Barriersto Cancer Treatment

during that phase of implementation but were delayed becauseof IRB issues. The second urban institution began navigatingpatients in March 2006 and grew quiekly. Three months afterimplementation. 27 patients consented to participate. Thebarriers noted in that institution were consistent with theother sites.

Next Steps in the Navigator ProgramAccording to satisfaction surveys, physicians and patients

believe that navigation is beneficial. Overwhelmingly positiveresponses support the need for assistance hy certain popula-tions in dealing with the complex and confusing healthcaresystem. But, how can patient navigations impact on clinicaloutcomes he determined? The premise is simple: Removingbarriers to care for patients to complete treatment regimes asprescribed will have a profound impact on clinical outcomes.The ROCOG navigator program was designed to answer thatquestion. Fourteen months of data are available from patientswho used the navigator system to adhere to treatment regimes.The clinical outcomes of those patients will be analyzed andcompared to patients in corresponding institutions (i.e.. rural-to-rural facility, urban to-urban facility). The institutions havesimilar demographics regarding per capita income and stateaverage unemployment rate. Patients will be matched accord-ing to age. race, gender, and disease, including prostate, breast,colon, and lung cancers. Information will be obtained from thetumor registry system such as date and stage of diagnosis, dateof initial treatment, date of treatment s end, and yearly patientdisposition.

Patient navigation was hypothesized to impact the amountof charity care or free care dispensed by institutions. Patientswho are uninsured often receive care regardless of their abil-ity to pay. A large portion of time was spent by the navigators

Clinical Journal of Oncology Nursing • Volume 11, Number 5 • Development of a Research Program to Address Disparities 637

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Financial Transport Social Child American ScheduleCancerSociety

Type of Service

End

of life

Reach to

Recovery

I Rural facility I Urban facility

Figure 5. Average Service Time Spent by the Patient NavigatorsPer Request for Services

assisting patients in obtaining state-funded medical assistanceearly in their diagnosis. A comparison of the use of charitycare by the oncology department will be tracked over time andcompared to use prior to the initiation of the patient navigatorprogram.

Adherence to treatment will be measured by patient self-report. Annual follow-up phone calls will determine whetherpatients completed the intended treatment regime. A random-ized check of patient records will verify accuracy of self-re-porting.

Community outreach is needed to increase screening andearly detection of cancer. Low socioeconomic communi-ties and minority populations may have cultural beliefs andeducational needs that prevent them from seeking preven-tive or diagnostic examinations. Patient navigators cannotassist patients if they stay in their communities without beingdiagnosed. Conversely, community outreach programs thatpromote cancer screenings in low socioeconomic areas mustprovide resources to deal with a devastating cancer diagnosisonce it is made. Thus, community outreach programs arevital for patient navigator programs during the developmentphase.

Future StudiesPatient navigators have been well received as new members

of the cancer care team. Their usefulness has been touted hyphysicians and the patients whose lives have been affected hynavigators. Nurses who were interviewed informally helievedthat the program was beneficial. In addition, the concept ofpatient navigation received the attention of policy makers inWashington, DC. On June 29, 2005, the Navigator Outreach

and Chronic Disease Prevention Act wassigned into law. providing S2S million infunds to support patient navigator pro-grams in community settings across thecountry that were linked to existing can-cer screening programs (Winstead, 2005).However, patient navigation is still in itsinfancy, with the door to future studieswide open. Financially troubled commu-nity hospitals generally do not offer socialservices in their outpatient departments,leaving social service issues to be dealtwith by the nursing staff. Can navigatorstill that void and positively impact rheworkload of nurses while improving thequality of care received? Who would bestfill the position—professional nursingstaff with greater knowledge of oncologyi55ues or skilled community memberswho are familiar with the community andits resources? Would navigators similar inethnicity who speak the language used bypatients in the community have a greaterimpact on care? Is patient navigation acost-effective endeavor for communityhospitals? What is the public relationsvalue to a community where disparate

populations may carry cultural beliefs of the healthcare sys-tem? Those questions need to be answered as patient navigatorprograms become implemented more widely.

ConclusionHealth disparities have existed for years hut recently have

been brought to the forefront when discussing national healthcare issues. The 2001 Cancer Panel Report to the President titled"Voices of a Broken System" concluded. "No person with cancershould go untreated. No person with cancer should he bank-rupted by a diagnosis of cancer. No person with cancer shouldhe forced to spend more time fighting their way through thehealth care system than fighting their disease" (Freeman. 2002,p. 5). Navigators will not only assist patients to achieve theirgoals by helping to guide them through a complex healthcaresystem but will make a difference in the outcomes of patientswho might otherwise fall through the cracks.

Tlje authors gratefully acknowledge Elaine Martz, BS, Laura Hoff-man, BS, Barh Kleivien, BS, and Ditight E. Heron, MD,pr their reviewof the article.

Author Contact: Karen A. Schwaderer, RN, BSN, OCN®, can be reached at

[email protected], with copy to editor at [email protected].

References

American Cancer Society. (2007). Cancer facts and figures forAfrican Americans. 2006-2007. Atlanta, GA: Author.

Dohan. D., & Schrag, D. (2005). Using navigators to improve careof underserved patients: Current practices and approaches.Cancer, 104, 848-855.

638 October 2007 • Volume 11, Number 5 • Ciinical Journal of Oncology Nursing

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Doty, M..V1.. & Holmgren, A.I., (2006. August). Health care discon-nect: Claps in coverage and care tor minority adults. Findingsfrom the Commonwealth Fund Biannual Health Insurance Survey(2005). Commontvealth Fund. 21, 1-12.

Ferketich. A., MacEachern. S.. Shen. L.. & Lemeshow, S. (200.^.Summer). Estimating cancer rates in the Amish. BiostatNews,Stimmer 200,i. 2-3.

Frt-tnian, HP. (2002). Breast health patient navigator resrmrcekit. New York: HANYS Breast Cancer Demonstration Project.

Freeman. H.P. (2004). Poverty, culture, and social injustice: Deter-minants of cancer disparities lEditorialf. CA: A Cancer Journalfor Clinicians. 54, 72-77

Hamman. R.F.. Barancik.J.I., & Ulienfeld, A.M. (1981). Patternsof mortality in the Old Order Amish. I. Background and majorcauses of death. American fournal of Epidemiology. 114,845-861.

I icde, K. (2006). Agencies look to patient navigators to reduce can-cer care disparities./r;Hf«rt/ of the National Cancer Institute,98(^). 15^-159.

National Cancer Institute, (n.d.). Patient navigator. Retrieved August25, 2007, from hitp://vt'ww5.cancer.gov/rrp/CDRP/navigat()r.html

Oncology Nursing Society. (2000). Multictilturai tool kit: Movingtoward cultttral competence. Pittshurgh, PA: Author.

Pennsylvania Department of Health. (2005). Cancer facts andfigures. Pennsylvania. Harrisburg. PA: Author.

Pennsylvania Department of Health. (2006). Cancer facts andfigtires for African Americans, Pennsylvania. Harrisburg, PA:Author.

Swift, M.. Reitnauer, P.J., Morrell, D., & Chase, C.L. (1987). Breastand other cancers in families with ataxia-telangiectasia. NewEngland Journal nf Medicine. 316. 1289-1294.

Trover, H. (1988). Review of cancer among 4 religious sects: Evi-dence that life-styles are distinctive sets of risk factors. SocialScience and Medicine, 26, IOO~-1O17.

Ward. E., Jemal, A., Cokkinides, V.. Singh. G.K., Cardinez, C. Gha-foor. A., et al. (2004). Cancer disparities by race/ethnicity andsocioeconomic status. CA: A Cancer Jotirnal for Clinicians,54, 78-9.5.

Winstead. E. (2005, July 12). Helping patients navigate the hcahhcare system. NCI Cancer Bulletin, 2(28), 4.

Receive continuing nursing education credit forreading this article and taking a brief quiz. Seethe Continuing Nursing Education in this issuefor more information.

Call for Institutes and Open Sessions: 2008 ONS Institutes of Learning

The Institutes of Learning (IOL) Team invites ONS members to submit ideas for institutes oropen sessions to be offered at the 2008 IOL. The conference will be held November 14-16, 2008,in Seattle, WA. The IOL Team will make decisions regarding institutes, content, and speakersat its January 2008 meeting. An institute provides three or six hours of intense training on acutting edge topic of interest, and the 90 minute open sessions focus on a variety of clinicaland current healthcare issues. Selection of topics, content, and speakers is the sole responsibil-ity of the IOL Team. Decisions of the IOL Team regarding content are based on identified ONSmember learning needs.

Requirements: The IOL Submission Form requests the following: name of institute or opensession, rationale, brief content outline, and identification of potential speakers.

To submit an idea for an institute or open session online, visit www.ons.org/cecentral in De-cember for further instructions.

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