authors and credits - fox chase cancer center · while the writ- ings assembled here ... harold...

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Authors and Credits Danielle M. Crookes, MPH, Health Communications and Health Disparities, Fox Chase Cancer Center Marion E. Morra, MA, Sc.D, President, Morra Communications, Milford, Connecticut Theresa Berger, MBE, Health Communications and Health Disparities, Fox Chase Cancer Center Rachel Gallo, BS, Health Communications and Health Disparities, Fox Chase Cancer Center Principal Investigator: Linda Fleisher, MPH, PhD (C), Health Communications and Health Disparities, Fox Chase Cancer Center This project was funded by the Pennsylvania Department of Health, Edward G. Rendell, Governor. July 29, 2008 © Fox Chase Cancer Center

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How to Use this Guide .....................................................................................................................4 Section I. Introduction.....................................................................................................................6

Defining Patient Navigation .................................................................................................6 Types of Navigators ...............................................................................................................6

Fitting Navigation into the Cancer Care Continuum........................................................8 Current Initiatives in Patient Navigation............................................................................9 The American Cancer Society Patient Navigator Program ................................10 Medicare Cancer Prevention and Treatment Demonstration for Racial and Ethnic Minorities ...............................................................................................10

National Cancer Institute/Center to Reduce Cancer Health Disparities Patient Navigator Research Program ....................................................................11

Future Research and Application to Chronic Disease.....................................................11 Section II. Literature ......................................................................................................................12

Must Read Articles ...............................................................................................................13 Randomized Controlled Trials ...............................................................................13 Non-randomized Studies ........................................................................................15 Descriptive Studies...................................................................................................16 Reviews ......................................................................................................................17

Further Reading List ............................................................................................................18 Randomized Controlled Trials ...............................................................................18 Non-randomized Studies ........................................................................................18 Descriptive Studies...................................................................................................19 Opinions and Editorials...........................................................................................22

Technical Reports .................................................................................................................23 Background Articles.............................................................................................................25

Section III. Getting Started............................................................................................................27 Things to Consider ...............................................................................................................27 Investigating the Gaps and Barriers for Your Patient Population.................................27 Learning from Successful Patient Navigation Programs................................................28

Finding Funds for a Patient Navigation Program ...........................................................28 Staffing a Patient Navigation Program .............................................................................28 Evaluating Your Program’s Effectiveness.........................................................................29

Section IV. Toolkits and Other Resources .................................................................................30 Toolkits...................................................................................................................................30 Other Resources ....................................................................................................................32 References .........................................................................................................................................35

Table of Contents

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Whether you are considering starting up a patient navigation program at your institu-tion or you are in the midst of implement-ing your program, there are materials in this guide that you can use to adopt or refine best practices in your program. The literature in navigation is still evolving. It is especially limited in the areas of use during the treatment phase, formative evaluation and determining the cost-effectiveness of programs. While the writ-ings assembled here are not exhaustive, they serve as a good starting place to de-velop a better understanding of patient navigation, how it can be implemented, and the outcomes already achieved. In addition to the literature, this guide includes toolkits, websites and other materials that share the successes of programs and lessons learned from experts in navigation.

To help you in your search of materials, the guide has been organized into four sec-tions:

Section I. Introduction This section provides a brief background about patient navigation, touching upon its history, trends in implementation, and its future direction. Section II. Literature This section includes a list of articles on patient navigation and other literature that provide a background on the issues that patient navigation is designed to address. For your convenience, this section has been broken into four types of materials.

Must Read Articles These articles include those that have been recently published, have reported experimental trials, or have been cited several times in the literature. Anno-tated bibliographies have been pro-vided and the articles have been organ-ized by type. Further Reading These are articles, opinions, and editori-als that further describe the research on patient navigation. Some of these arti-cles provide a more detailed back-ground for the must-read articles, while others help to give a different perspec-tive on the uses and interpretation of patient navigation. A brief comment is provided to assist in identifying the ma-jor thrust of the material; these articles are organized by type.

How to Use This Guide

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Technical Reports These include major reports on navigation that give more substantial and specialized information. Brief comments are provided on the content of the reports. Background Articles This list of articles include those papers which help to provide some background on the issues that patient navigation has been developed to address. These articles are listed without comment.

Section III. Getting Started This section will help you in planning and be-ginning your patient navigation program. It includes materials on how to assess the need for a program, how to determine the value of your program to your institution, and how to include evaluation into your efforts from the inception. It is based on present best practices in the field. Section IV. Toolkits and Other Resources This section provides a listing and description of toolkits, websites and other resources that you can use to help develop or improve your own patient navigation program. The toolkits include materials to support your program and help prepare personnel for the tasks to be accomplished. The websites provide materials and resources, along with the opportunity to find up-to-date information through postings from experts, news alerts or forums. We hope that this resource guide will help connect you with the tools and information you need to help make your program more effective for your institution and for your com-munity.

How to Use This Guide (cont’d)

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In 1989, the American Cancer Society (ACS), chaired by its National President Harold Freeman, M.D., conducted a series of hearings throughout America to hear the testimony of poor Americans who had been diagnosed with cancer (Freeman, 2004). Based on these hearings, the Ameri-can Cancer Society issued its Report to the Nation on Cancer in the Poor, which high-lighted the following critical issues:

• Poor people meet significant barriers when they attempt to seek diagnosis and treatment of cancer.

• Poor people and their families make sacrifices in order to obtain cancer care and often do not seek care be-cause of barriers faced.

• Poor people experience more pain, suffering and death because of late disease.

• Fatalism about cancer is prevalent among the poor and prevents them from seeking care.

As a result of these findings, the first Pa-tient Navigation Program was conceived and initiated in 1990 by Dr. Freeman at Harlem Hospital Center in New York City, funded by a grant from the American Cancer Society (Freeman, 2004). Dr. Freeman, who coined the term “patient navigation”, introduced the concept as a new way to address some of the factors thought to be responsible for poor rates of screening, adherence to follow-up, and treatment for cancer among medically un-derserved communities. During the Har-lem Cancer Education and Demonstration Project, Freeman and his colleagues trained lay individuals as patient naviga-tors who would identify patients’ barriers to seeking care and would work with

patients, care providers, and community resources to overcome these barriers (Freeman et al., 1995). Results from this study indicated that patient navigators had the potential to facilitate a patient’s timely movement along the cancer care continuum because they successfully addressed the barriers that would have otherwise prevented these patients from seeking care.

Defining Patient Navigation

Since this first study, patient navigation programs have been initiated across the United States and Canada. Many of these programs have been shaped by the needs of their community and institutions. As such, no universal definition for patient navigation exists (Dohan & Schrag, 2005). Table 1 provides the definitions and roles of patient navigation identified by some leaders in the field. While the definitions and tasks may differ, common themes across programs include:

• Providing intensive, personal assis-tance for patients

• Identifying and addressing patients’ barriers to seeking or receiving care

• Moving patients along cancer care continuum in a more timely manner

• Connecting patients to community and medical resources

As you will find in the literature, these themes appear again and again, regardless of the type of organization, type of navigator or navigation tasks.

Types of Navigators

In Freeman’s original model, patient navi-gators were lay individuals who were (continued on page 8)

Introduction I.

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Introduction (cont’d)

Program Definition and Role of Patient Navigation

American Cancer Society Patient Navigator Program

The goal of an ACS Patient Navigator Program is to deliver timely information and available programs, promote informed decision making and enhance the quality of life for patients undergoing cancer treatment by the optimal utilization of ACS services and programs. The role of the patient navigators, who are full-time employees, is to ensure that the individual needs of oncology patients, related to information and barriers to care, are queried and addressed using ACS and other resources, to provide assistance and improve the patients and caregivers treatment experience. The intention is to create an environment in which the ACS patient navigator is identified as an integral part of the delivery of service at the host site and in the community. Patient Navigator Programs are created in conjunction with an enthusiastic champion and partner at the facility, and require a collaborative agreement be reached between the host site facility and ACS Di-visions. It is expected that all programs will adhere to national standards and guide-lines set forth by the Society. (Personal communication, July 7, 2008, ACS)

C-Change

Individualized assistance offered to patients, families, and caregivers to help overcome health care system barriers and facilitate timely access to quality medical and psychoso-cial care from pre-diagnosis through all phases of the cancer experience. Navigation ser-vices and programs should be provided by culturally competent professional or non-professional persons in a variety of medical, organizational, advocacy or community set-tings. The type of navigation services will depend upon the type, severity, and/or com-plexity of identified barriers. (C-Change, PN Promotion Initiative Workgroup, 2005)

National Cancer Institute

"Patient navigation" in cancer care refers to the assistance offered to healthcare consum-ers (patients, survivors, families and caregivers) to help them access and then chart a course through the healthcare system and overcome any barriers to quality care. A pa-tient navigator can be a registered nurse or a social worker who functions as a "guide." Navigators help their patients move through the complexities of the healthcare system-- getting them more timely treatment, more information about treatment options and pre-ventive behaviors. For example, in one community, a navigator's job may be to coordi-nate transportation to medical care for patients since some residents may have to travel more than 100 miles to receive cancer treatment. The program is designed for the naviga-tor to serve as a reliable ally to lean on for advice, support and direction. A navigator is someone who understands the patient's fears and hopes, and who removes barriers to effective care by coordinating services and increasing a cancer patient's chances for sur-vival and quality of life. (NCI, 2005)

Pfizer Oncology

Patient navigation is a process by which an individual—a patient navigator—guides pa-tients with a suspicious finding (i.e., test shows they may have cancer) through and around barriers in the complex cancer care system to help ensure timely diagnosis and treatment. (Pfizer Oncology, 2006)

Table 1. Definitions of Patient Navigation

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knowledgeable about their community’s re-sources and also had an understanding of the medical setting. Today, institutions have adapted their navigation programs to include a variety of lay and professional navigators. Lay navigators are used because of their con-nection to the community and their ability to help patients address non-medical barriers, such as lack of transportation or inability to pay for screening or treatment. Lay naviga-tors have included paid personnel, but have also included volunteer cancer survivors who have provided patients with an even more personal level of emotional support and un-derstanding (Steinberg et al., 2006). An increasing number of institutions have adopted professional navigators. Social work-ers, nurses, and health educators have all been used in patient navigation (Christie et al., 2008; Darnell, 2007; Englestad et al., 2001) be-cause of their strong understanding of the medical system and their experience commu-nicating with other health care professionals like physicians, radiologists and surgeons (Battaglia et al., 2006). In institutions with sufficient funding for navi-gation, a mixed model using lay and profes-sional navigators has been used (Lantz et al., 2004). In the mixed model, the professional

navigator may be used to guide the patient through the health care system and facilitate timely diagnostic follow-up or start of treat-ment, while the lay navigator works with the patient to ensure that non-medical issues do not interfere with the patient’s ability to attend appointments and procedures. Some institu-tions are using the terms clinical patient navi-gator and non-clinical patient navigator —describing the tasks the navigator is perform-ing rather than who is filling the position.

Fitting Navigation into the Cancer

Care Continuum

Regardless of what type of navigator has been used, patient navigation has traditionally been implemented in one of three stages along the cancer care continuum—screening, diagnostic follow-up, and treatment (Freeman, 2006). While the goal of navigation has been to re-duce the length of time it takes for a patient to move along the cancer care continuum, many programs have implemented navigation to ad-dress only one of the three stages. In the screening portion of the continuum, pa-tient navigation has involved services such as explaining the purpose and process involved in cancer screening, reminding patients about screening appointments, rescheduling missed appointments, providing emotional support


Abnormal Results Treatment Diagnosis Survivorship Suspicious

Findings

Patient Navigation

The Cancer Care Continuum

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and assisting patients in finding community resources, such as transportation and financial assistance for screening (Christie et al., 2008; Jandorf et al., 2005; Weber & Reilly, 1997). In a study on colorectal cancer screening, individu-als who had received navigation services were more likely to have made and kept endoscopy appointments than non-navigated patients. In a study that used an intensive case manage-ment service to improve mammography use, more women who received the navigation ser-vices completed their mammograms than women who did not receive the intervention (Weber & Reilly, 1997). When patient navigation has been used to fa-cilitate timely diagnostic resolution after ab-normal screening findings, navigator tasks have included those previously mentioned, as well as advocating for patients among the can-cer care team to obtain timely appointments for further investigation of results and navi-gating patients through the health care setting (Battaglia et al., 2006; Ell et al., 2007; Ferrante et al., 2008). Among women who have re-ceived abnormal breast cancer findings, navi-gation services have been found to decrease the diagnostic interval (Ferrante et al., 2008) and improve the likelihood of adhering to fol-low up recommendations (Ell et al., 2007). Although studies specifically on treatment have not been widely reported, continued navigation through the health care setting, streamlining of and reminders about appoint-ments, and addressing non-medical barriers (e.g. insurance and finances, child care, trans-portation) can facilitate patients seeking treat-ment and can improve five-year survival rates (Freeman, 2006).

Current Initiatives in Patient

Navigation

In the summer of 2005, President Bush signed into law the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005, which set aside $25 million to support grantees in re-cruiting, training and employing patient navi-gators. Under this act, patient navigators are intended to help individuals by:

• Acting as contacts for individuals seek-ing prevention or early detection ser-vices for cancer or other chronic diseases

• Facilitating the involvement of commu-nity organizations to provide better ac-cess to high-quality health care services to individuals at risk for, or who have, cancer or other chronic diseases

• Coordinating with the relevant health insurance ombudsman programs to pro-vide information to such individuals about health coverage

• Notifying individuals of clinical trials

• Helping patients overcome barriers within the health care system to ensure prompt diagnostic and treatment resolu-tion of an abnormal finding of cancer or other chronic disease

• Conducting ongoing outreach to health disparity populations

(U.S. House, 109th Congress, 2005) Support of patient navigation at the policy level has generated a nationwide interest in navigation and the breadth of its impact in a variety of settings. Some of the largest ongo-ing patient navigator programs in the U.S. in-clude the American Cancer Society Navigator Program, the Medicare Cancer Prevention and Treatment Demonstration for Racial and Eth-nic Minorities and the National Cancer Insti-tute/Center to Reduce Cancer Health Dispari-ties Patient Navigator Research Program. Be-cause of their size and the variety of questions they aim to answer, these studies will help to


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provide even more rigorous evidence needed to further build the momentum for patient navigation. Some of these programs have the funds and ability to support the involvement of new institutions looking to implement a navigator program.

The American Cancer Society Patient Navigator Program

Dr. Harold Freeman, with the support of the American Cancer

Society, introduced the first patient navigation program for cancer at Harlem Hospital in 1990. The American Cancer Society launched its formal Patient Navigator Program in 2005. Today it has nearly 100 programs in a variety of healthcare settings including both public and private hospitals. The ACS Patient Navigator Program involves the placement of trained ACS staff in strategi-cally selected healthcare facilities that treat a large number of newly diagnosed and under-served cancer patients. The goal of an ACS Pa-tient Navigator Program is to deliver timely information and available programs, promote informed decision making and enhance the quality of life for patients undergoing cancer treatment by the optimal utilization of ACS services and programs. The role of the patient navigators, who are full-time employees, is to ensure that the indi-vidual needs of oncology patients, related to information and barriers to care, are queried and addressed using ACS and other resources, to provide assistance and improve the patients and caregivers treatment experience. The in-tention is to create an environment in which the ACS patient navigator is identified as an integral part of the delivery of service at the host site and in the community. Patient Navi-gator Programs are created in conjunction with an enthusiastic champion and partner at

the facility, and require a collaborative agree-ment be reached between the host site facility and ACS Divisions. It is expected that all pro-grams will adhere to national standards and guidelines set forth by the Society. In 2007, AstraZeneca provided a $10 million gift to help expand the Patient Navigation program. The program will allow ACS to open 50 new patient navigator sites over the next five years. Numerous other generous pri-vate donors have contributed to the growth of the program in the last two years. In 2008, the ACS and the NCI collaboratively hosted the third Annual National Patient Navigation Training Program. They present the evaluation analysis of their program in Calhoun et al. (2008). For further information, contact Angelina Esparza, MPH, RN, Director, ACS Patient Navigator Program ([email protected]). (Personal Communication, July 7, 2008, ACS)

Medicare Cancer Prevention and Treatment Demonstration for Racial and Ethnic Minorities

In 2006, The Centers for Medicare and Medi-caid Services awarded four-year cooperative agreements to six demonstration sites in Mon-tana/Utah, Hawaii, Texas, Maryland, New Jersey, and Michigan. Each site is implement-ing a randomized controlled design to study the impact of patient navigator programs on improving care for minority populations. In this $24-million program, navigators will navi-gate minorities with and without cancer through the healthcare system and facilitate their cancer screening, diagnosis, and treat-ment. Target populations include American Indians, Asian Americans and Pacific Island-ers, Hispanics (Mexican Americans, Cubans and Puerto Ricans) and African Americans. Cancer sites included in this study are breast,


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cervical, colorectal and prostate (CMS, 2006).

National Cancer Institute/Center to Reduce Cancer Health Disparities Patient Navigator Research Program

In October 2005, the NCI, with sup-port of the American Cancer Society, awarded $25 million in grants to nine academic re-search institutions to establish the Patient Navigator Research Program (PNRP). Sites include Boston, Denver, Washington D.C., Tampa, Portland, Chicago, Rochester, San An-tonio and three cities in Ohio. Each of these sites is developing patient navigator interven-tions that assist individuals who may have breast, cervical, colorectal or prostate cancer in decreasing the time between abnormal find-ings, diagnosis and treatment. Issues related to cost-effectiveness, type of navigator used, and location of navigator are also being inves-tigated (DRA, 2007; NCI, 2006).

Future Research and Application to

Chronic Disease

Given the psychosocial support and health benefits that cancer patients receive from pa-tient navigation, there is a growing body of research that is investigating the application of patient navigation to other disease areas. Ad-aptations to patient navigation will be needed to make it appropriate to the needs of those facing longer-term disease. So far, patient navigation or related coordination services have been applied to diabetes (Ingersoll et al., 2005), palliative care (Fischer et al., 2007), and HIV/AIDS (Bradford et al., 2007). Further re-search will be needed to better understand the impact of patient navigation in these areas.


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Literature II.

In an effort to promote evidence-influenced practices, this section provides an overview of the literature that has been published on patient navigation as of June 2008. Some papers refer to patient naviga-tion directly, while others provide infor-mation on other patient navigation activi-ties, such as care coordination or case management. For your convenience, articles have been separated into four categories. Articles in the first two categories—Must Read and Further Reading —have been further or-ganized by type of article.

Must Read Articles The articles include

those that have been recently published, have reported experimental trials, or have been cited several times in the lit-erature. For these articles, annotated bib-liographies have been provided.

Further Reading These are articles, opin-

ions, and editorials that help to further describe the research on patient naviga-tion. Some of these articles provide a more detailed background for the must read articles, while others help to give a different perspective on the uses and in-terpretation of patient navigation. A brief comment is provided to assist in identifying the major thrust of the mate-rial.

Technical Reports These include major

reports on navigation that give more substantial and specialized information. Brief comments are provided on the ba-sic content of the reports.

Background Articles These articles in-

clude those papers which help to pro-vide some background on the issues that patient navigation has been developed to address. They discuss the effects of delays in screening and treatment, fac-tors that have been associated with these delays, and barriers that patients face along the cancer care continuum. They are listed without comment.

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Literature—Must Read Articles

Christie, J., Itzkowitz, S., Lihau-Nkanza, I., Esmond, W., Castillo, A., & Jandorf, L. (2008). Randomized controlled trial using patient navigation to increase colonoscopy screening among low-income minorities. Journal of the National Medical Associa-tion. 100(3), 278-284.

Through this small, pilot randomized controlled trial, the authors found that patients receiving the patient navigation intervention were more likely to complete colonoscopy screenings than non-navigated pa-tients. The authors clearly outline the duties of the professional patient navigator, which included, but were not limited to, assisting patients with scheduling and rescheduling missed colonoscopy appointments, explain-ing procedures to patients in Spanish and English, and organizing transpor-tation services needed for patients to get to colonoscopy appointments. The authors also outline the naviga-tion process and timeline of services provided to patients.

Ell, K., Vourlekis, B., Lee, P.-J., & Xie, B. (2007). Patient navigation and case man-agement following an abnormal mammo-gram: A randomized clinical trial. Preven-tive Medicine. 44, 26-33.

Aimed at investigating interventions that address mammogram follow-up, the authors conducted a randomized controlled trial comparing adherence to follow up for women enrolled in the SAFe program and women not enrolled or receiving usual care. The SAFe program is designed to reduce

the effect of barriers to follow-up by providing psychosocial counseling (conducted by a social worker) and risk assessment, health education, pa-tient follow up and tracking, appoint-ment reminders and system naviga-tion (all conducted by a patient navi-gator). Women enrolled in the pro-gram were more likely to adhere to timely diagnostic resolution than women receiving usual care. More information about the SAFe program can be found in Ell, Padgett, et al., 2002 and Ell, Vourlekis, et al., 2002.

Ferrante, J., Chen, P., & Kim, S. (2008). The effect of patient navigation on time to di-agnosis, anxiety, and satisfaction in urban minority women with abnormal mammo-grams: A randomized controlled trial. Jour-nal of Urban Health. 85(1) 114-124.

In this randomized controlled trial, the authors compare patient naviga-tion with usual care in their effects on time to seeking diagnostic resolution and reducing women's anxiety. The authors outline qualifications for the patient navigator, the training pro-vided, as well as the services the navi-gator provided to participants. Over-all, patient navigation was found to significantly reduce the diagnostic interval (control = 42.7 days, naviga-tion = 25.0 days).

Must Read Articles

Randomized Controlled Trials

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Literature—Must Read Articles (cont’d)

Jandorf, L., Gutierrez, Y., Lopez, J., Christie, J., & Itzkowitz, S. (2005). Use of a patient navigator to increase colorectal cancer screening in an urban neighbor-hood health clinic. Journal of Urban Health. 82(2), 216-224.

In this prospective clinical trial, the authors test whether a patient naviga-tion program, combined with physi-cian recommendation, facilitated medically underserved men and women seeking colorectal cancer screenings (fecal occult blood test, flexible sigmoidoscopy and/or colonoscopy). As in Christie et al. 2008's later paper on a similar study, the authors provide a description of the navigation process provided to subjects. The navigator was a com-munity member with an ethnic back-ground similar to the study partici-pants. Overall, those who received the navigator intervention were more likely to have completed colorectal cancer screening by endoscopy within six months than those subjects in the usual care group.

Taylor, V., Hislop, G., Jackson, J., Tu, S.-P., Yasui, Y., Schwartz, S., et al. (2002). A ran-domized controlled trial of interventions to promote cervical cancer screening among Chinese women in North America. Journal of the National Cancer Institute. 94(9), 670-677.

This randomized controlled trial com-pares the effects of an outreach worker intervention and a direct mailing of educational and video ma-terials on North American Chinese women obtaining regular Pap smears. Although the authors do not refer to the outreach worker intervention as

patient navigation, it does include many of the elements central to pa-tient navigation. The outreach worker’s duties included provision of social support for women, providing cultural mediation between the women and health care facilities and provision of logistical assistance (including appointment-making, ar-ranging interpreter services and as-sisting with transportation). Both the direct mail and outreach worker in-terventions were found to be statisti-cally significant in improving screen-ing behavior at one of the two study sites.

Weber, B. & Reilly, B. (1997). Enhancing mammography use in the inner city: A randomized trial of intensive case manage-ment. Archives of Internal Medicine. 157(20), 2345-2349.

This study on the use of community health educators to improve mam-mography use does not bear a patient navigation label, but does exhibit many of the characteristics of patient navigation services. Activities of the community health educator included sending written reminders to have a mammogram done, case manage-ment services, patient education, ap-pointment scheduling, as well as ad-dressing non-medical needs such as finding transportation, obtaining fi-nancial assistance and providing per-sonal counseling to empower patients to communicate with physicians. A significantly greater percentage of in-dividuals who received the interven-tion were more likely to complete a mammogram than those in the con-trol group. A cost-effective analysis of the intervention is also reported.

Must Read Articles

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Battaglia, T., Roloff, K., Posner, M., &

Freund, K. (2007). Improving follow-up to

abnormal breast cancer screening in an ur-

ban population: A patient navigation inter-

vention. Cancer Supplement. 109(2), 359-367.

This non-randomized study aims to determine the effect of a patient navi-gator on women seeking timely fol-low up to abnormal breast cancer screening results. Subjects consid-ered to have timely follow-up were those who attended a diagnostic evaluation visit within 120 days of the originally scheduled appointment. This time-frame was in part chosen because of evidence supporting that delays of 3-6 months in diagnosis and treatment can impact survival (Richards et al., 1999). The study out-lines the navigator's duties, which fo-cused around case identification, identification of barriers to care, im-plementation of a care plan, tracking the patient through to completion, advocating for patients with cancer care providers, and making reminder and informational telephone calls to patients. The primary outcome of the study was that 78 percent of the inter-vention group had timely follow up compared to 64% of the pre-intervention group (OR =2.0, p<0.0001). This suggests that patient navigators can help reduce women's delays in seeking breast cancer care.

Freeman, H., Muth, B., & Kerner, J. (1995). Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer Practice. 3, 19-30.

This is Harold Freeman's landmark study that introduced the term pa-tient navigation as an intervention designed to improve cancer screening and follow-up rates among the medi-cally underserved. This paper de-scribes the multi-phase study and highlights the process by which the patient navigation intervention evolved in its early phases. It is an example of how patient navigation must be tailored to the needs of the community and the institution where it is being implemented.

Psooy, B., Schreuer, D., Borgaonkar, J., Caines, J., (2004). Patient navigation: Im-proving timeliness in the diagnosis of breast abnormalities. Can Assoc Radiol J. 55(3), 145-50.

This Canadian retrospective cohort study investigated the effect of pa-tient navigation on the timeliness of the diagnosis of breast abnormalities (measured by the interval between diagnostic imaging and a core biopsy procedure). The patient navigator used in this study was a health care worker and breast cancer survivor who served as a patient advocate by working with physicians to facilitate timely investigation of breast abnor-malities and providing educational and emotional support to women. Other responsibilities of the navigator are explained and justified in the pa-per. The authors found that the navi-gator intervention resulted in a statis-tically significant decrease in waiting

Must Read Articles

Non-randomized Studies

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time for a core biopsy (20 days before navigation was implemented and 14 days after navigation was imple-mented).

Freeman, H. (2006). Patient navigation: A community centered approach to reducing cancer mortality. Journal of Cancer Educa-tion. 21(Suppl.), S11-S14.

A somewhat informal paper from Dr. Freeman in which he provides a brief description of patient navigation and summarizes the findings from the studies on the Harlem Hospital Cen-ter Breast Cancer Screening and Pa-tient Navigator Program. References are made to Freeman and Wasfie 1989, Freeman et al. 1995, and Olu-wole et al. 2003.

Petereit, D., Molloy, K., Reiner, M., Hel-big, P., Cina, K., Miner, R., et al. (2008). Es-tablishing a patient navigator program to reduce cancer disparities in the American Indian communities of Western South Da-kota: Initial observations and results. Cancer Control. 15(3), 254-259.

This NCI/CHCRD sponsored study investigates the use of patient naviga-tion to lower cancer mortality rates for American Indians in the Northern Plains region. In this study, two pa-tient navigator programs are util-ized—(1) an embedded nurse naviga-tor who assists patients who are un-dergoing treatment and (2) commu-nity health representatives who live and work on reservations to provide cancer education, network with local health resources and provide support

to individuals returning home after cancer treatment. Detailed descrip-tions of both navigators’ duties are provided. In addition, preliminary data findings on the number of pa-tients navigated and the impact of navigation on treatment completion rates are reported.

Schwaderer, K. & Itano, J. (2007). Bridging the healthcare divide with patient naviga-tion: Development of a research program to address disparities. Clinical Journal of Oncology Nursing. 11(5), 633-639.

This article describes the develop-ment and implementation of a patient navigator program implemented in rural and urban sites in Western Pennsylvania. The authors provide information on the navigators’ quali-fications, trainings, recruitment pro-cedures and data management meth-ods. The results reported include in-formation on patient satisfaction, the number of patients navigated, and additional demographic information about the patients seen. In addition to reporting the main barriers identi-fied, the authors also report the aver-age time taken by patient navigators to resolve these barriers, both at the urban and rural sites.

Steinberg, M., Fremont, A., Khan, D., Huang, D., Knapp, H., Karaman, D., et al. (2006). Lay patient navigator program im-plementation for equal access to cancer care and clinical trials: Essential steps and initial challenges. Cancer. 107(11), 2669-2677.

The investigators describe the process of implementing a patient navigation program and how they addressed

Must Read Articles

Descriptive Studies

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challenges in implementation. It pro-vides a helpful example of the pro-gram development process—from deciding whether to use a lay or pro-fessional navigator to defining navi-gators' roles to describing the initial patient use of navigation services. This is one of the few articles that aims to lay out the formative evalua-tion component of establishing a pa-tient navigation program and gives a good indication of common ques-tions, challenges and decision-making moments that arise along the process.

Vargas, R., Ryan, G., Jackson, C., Rodriguez, R., & Freeman, H. (2008). Characteristics of the original pa-tient navigation programs to reduce disparities in the diagnosis and treatment of breast cancer. Cancer. 113(2), 426-433.

This case study of the original site of patient navigation and two sites de-veloped by the leadership of the original site uses site visits and inter-views to provide a description of pa-tient navigation, the navigation proc-ess and the responsibilities of naviga-tors and program directors at these sites. In addition to their description of the navigation system, the authors also consider contextual issues re-lated to navigation, such as funding, cultural competence and the overlap and uniqueness of navigation when compared with community health workers and case managers.

Dohan, D. & Schrag, D. (2005). Using navi-gators to improve care of underserved pa-tients: Current practices and approaches. Cancer. 104(4), 848-855.

This review aims to answer three questions (1) What is patient naviga-tion? (2) How are programs organ-ized? and (3) What is known about the effectiveness of the programs? Although the authors find no single standard definition of patient naviga-tion in the literature, they identify two common definitions (barrier-focused and service-focused) and dis-tinguish navigation from other cancer support services. Eleven navigator programs are highlighted and infor-mation about their sponsors, type of navigator (professional vs. lay) and the disease sites they address are pro-vided. The authors also engage in a discussion about research designs and evaluation measures to consider for future navigator programs.

Wells, K., Battaglia, T., Dudley, D., Garcia, R., Greene, A., Calhoun, E. (2008). Patient navigation: State of the art or is it science? Cancer. 113(8), 1999-2010.

This most recent review identifies and summarizes published literature on patient navigation. The results cover topics such as definitions of navigation, navigator tasks, popula-tions served by navigators and the efficacy of navigation at different phases along the cancer continuum. The authors conclude with a descrip-tion of the National Cancer Insti-tute’s Patient Navigation Research Program.

Must Read Articles

Reviews

18

Literature—Further Reading

Dignan, M., Burhansstipanov, L., Hariton, J., Harjo, L., Rattler, T., Lee, R., et al. (2005). A comparison of two Native American navigator formats: Face-to-face and tele-phone. Cancer Control. November 2005, Cancer, Culture, and Literacy Supplement, 29-33.

This description of a Native Sis-ters project (introduced in Bur-hansstipanov et al. 1998) com-pares the effects of telephone-delivered and face-to-face deliv-ered interventions carried out by the patient navigators.

Engelstad, L., Steward, S., Nguyen, B., Be-deian, K., Rubin, M., Pasick, R., et al. (2001). Abnormal pap smear follow-up in a high-risk population. Cancer Epidemiol Biomarkers & Prev. 10, 1015-1020.

This study is not specifically about patient navigation, but more about a case management intervention in which a nurse case manager provides reminder services about gynecological ap-pointments, follows up with missed appointments and

incorporates a computerized da-tabase to help track the appropri-ate follow-up interval.

Jennings-Sanders, A. & Anderson, E. (2003). Older women with breast cancer: Perceptions of the effectiveness of nurse case managers. Nursing Outlook. 51(3), 108-114.

This study explores the percep-tions of older women with breast cancer about nurse case managers.

Ell, K., Padgett, D., Vourlekis, B., Nissley, J., Pinda, D., & Sarabia, O. (2002). Abnor-mal mammogram follow-up: A pilot study in women with low income. Cancer Prac-tice. 10(3), 130-138.

This earlier report of Project SAFe (followed up in Ell et al. 2007) provides a more detailed descrip-tion of the intervention reported in the later study.

Ell, K., Vourlekis, B., Muderspach, L., Nissly, J., Padgett, D., Pineda, D., et al. (2002). Abnormal cervical screen follow-up among low-income Latinas: Project SAFe. Journal of Women's Health & Gender-based Medicine. 11(7), 639-651.

Also an earlier report of Project SAFe (followed up in Ell et al. 2007), this focuses more on the findings as they relate to cervical cancer. The peer counselor re-ported here is referred to as a pa-tient navigator in the later paper.

Further Reading

Non-randomized Studies

Randomized Controlled Trials

19

Literature—Further Reading (cont’d)

Fang, C., Ma, G., Tan, Y., & Chi, N. (2007). A multifaceted intervention to increase cervical cancer screening among under-served Korean women. Cancer Epidemiol Biomarkers & Prev. 16(6), 1298-1302.

Bilingual educators implemented an intervention which included a group educational session, train-ing on how to navigate the health care system, activities on goal set-ting, and navigation services (e.g. arranging appointments, lan-guage translation).

Nash, D., Azeez, S., Vlahov., D., & Schori, M. (2006). Evaluation of an intervention to increase screening colonoscopy in an ur-ban public hospital setting. Journal of Ur-ban Health. 83(2), 231-242.

This retrospective analysis study investigates the impact of a com-bination of interventions de-signed to help patients overcome system barriers. Among this combination of interventions is a patient navigation intervention in which navigators assist patients with paperwork, schedule and remind patients about appoint-ments and facilitate referrals to care providers.

American Cancer Society (2007). Compo-nents of a successful patient navigator pro-gram. CA Cancer J Clin. 57, 70-71.

This article more informally ex-plores the Steinberg et al. 2006 study which implemented a lay navigator program.

Balavenkatesh, K., Schori, M., Azeez, S., Kumar, S., & Soni, A. (2007). Colorectal tu-mors within an urban minority population in New York City. Journal of General Inter-nal Medicine. 22, 835-840.

The authors conduct a retrospec-tive analysis of their study's sam-ple population to study the demographic characteristics of those subjects who had under-gone a colonoscopy. Please refer to Nash et al. 2006 for more infor-mation on the study.

Belkora, J., Katapodi, M., Moore, D., Franklin, L., Hopper, K., & Esserman L. (2006). Evaluation of a visit preparation intervention implemented in two rural, underserved counties of Northern Califor-nia. Patient Education and Counseling. 64(1-3), 350-359.

This study investigates the use of consultation planning, a tool de-signed to help patients develop questions for their physicians be-fore the doctor’s visit. It may serve as a tool for navigators to use in their work.

Further Reading

Descriptive Studies

20


Burhansstipanov, L., Wound, D., Cape-louto, N., Goldfarb, F., Harjo, L., Hatathlie, L., et al. (1998). Culturally relevant "navigator" patient support: The Native Sisters. Cancer Practice. 6(3), 191-194.

A brief description of the Native Women's Wellness through Awareness (NAWWA) project's Native Sisters program. These Native Sisters are lay Native American women who have been trained to assist other Native American women in seeking can-cer screening and follow up. More on a related study can be read in Dignan et al. 2002.

Doll, R., Stephen, J., Carroetavena, C., Lin-den, W., Pool, G., Ng, E., et al. (2003). Pa-tient navigation in cancer care: Program delivery and research in British Columbia. Canadian Oncology Nursing Journal. 13(3), 193.

This short article brings attention to the patient navigation research that is being conducted in Canada. More about the study reported in the article can be found in the Technical Papers section of this Resource Guide (Sociobehavioral Research Centre, BC Cancer Agency, 2005).

Fillion, L., de Serres, M., Lapointe-Goupil, R., Bairati, I., Gagnon, P., Deschamps, M., et al. (2006). Implementing the role of pa-tient-navigator nurse at a university hospi-tal centre. Canadian Oncology Nursing Journal. 16(1), 11-17.

This Canadian study investigated the role and function of an oncol-ogy patient-navigator nurse in the head and neck oncology program of a university hospital center. Individuals with cancer and their families, the university’s caregiv-ers and network partners were all interviewed to evaluate their per-ceptions of what the navigators services would be, how the navi-gator would be implemented, the usage of the navigator services and the reactions after the services were implemented.

Further Reading

21


Hede, K. (2006). Agencies to look at patient navigators to reduce cancer care dispari-ties. Journal of the National Cancer Insti-tute. 98(3), 157-159.

A short article that provides an overview of the research and status of patient navigation as of 2006.

Hiatt, R., Pasick, R., Stewart, S., Bloom, J., Davis, P., Gardiner, P., et al. (2001). Com-munity-based cancer screening for under-served women: Design and baseline find-ings from the breast and cervical cancer intervention study. Preventive Medicine. 33, 190-2003.

This article provides baseline characteristic data of the sample population of a study comparing three interventions to improve screening knowledge, attitudes and behavior. A description of the patient navigation interven-tion is provided. A follow-up re-port is expected.

Hoelz, T., Sladek, M., & Michaelson, P. (2007). Blending nursing roles in oncology and imaging: An innovative strategy. On-cology Nursing Forum. 34(1), 27-31.

One institution’s report on its as-sessment of patients’ needs and the changes made in their care services to address these needs, including the implementation of a nurse coordinator to help sup-port patients in the decision-making process.

Lantz, P., Keeton, K., Romano, L., & De-Groff, A. (2004). Case management in pub-lic health screening programs: The experi-ence of the National Breast and Cervical Cancer Early Detection Program. Journal of Public Health Management Practice. 10(6), 545-555.

This article provides a description of case management and the im-pact, benefits and challenges of implementing case management.

Lemak, C., Johnson, C., & Goodrick, E. (2004). Collaboration to improve services for the uninsured: Exploring the concept of health navigators and interorganiza-tional integrators. Health Case Manager Rev. 29(3), 196-206.

A case study on using health navigators as interorganizational integrators who can help the un-insured obtain timely appoint-ments and care.

Lisovicz, N., Wynn, T., Fouad, M., & Par-tridge, E. (2008). Cancer health disparities: What we have done. The American Journal of the Medical Sciences. 335(4), 254-259.

This study investigated the appli-cation of the community health advisor model in three cancer pro-grams that focused on either

Further Reading

22


breast or cervical cancer. One program, CHAAP, trained com-munity volunteers to serve as community health advisor naviga-tors who would help patients navigate the health care system.

Oluwole, S., Ali, A., Adu, A., Blane, B., Barlow, B., Oropeza, R., et al. (2003). Im-pact of a cancer screening program on breast cancer stage at diagnosis in a medi-cally underserved urban community. J Am Coll Surg. 196(2), 180-188.

This article compares the study population's characteristics of cancer stage at diagnosis and demographics with those of Free-man & Wasfie's 1989 study popu-lation. This paper reports find-ings on individuals who would have had access to free cancer screening clinics, educational pro-grams and patient navigation services.

Bruce, S. (2007). Taking the Wheel. ONS Connect. 12(3), 8-13.

This article discusses the role of the nurse navigator in the cancer care continuum.

Darnell, J. (2007). Patient navigation: A call to action. Social Work. 52(1), 81-83.

This commentary helps to explain the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005 and explores the roles social workers can play in imple-menting patient navigation.

Fischer, S., Sauaia, A., & Kutner, J. (2007). Patient navigation: A culturally competent strategy to address disparities in palliative care. Journal of Palliative Medicine. 10(5), 1023-1028.

The authors explore the benefits and challenges of incorporating patient navigation into the pallia-tive care setting.

Further Reading

Opinions and Editorials

23

Literature—Technical Reports

C-Change. Cancer patient navigation: Published information. Retrieved June, 2008 from http://www.c-changetogether.org/pubs/default.asp.

Through this narrative report on patient navi-gation, the authors provide a detailed ac-count of patient navi-gation, the context in which it was devel-oped and the future direction of research. By taking on a more broad definition of patient navigation (a system, rather than a specific person), they include a variety of health professional titles in their re-port, particularly social workers. Re-sources, which include published arti-cles and materials from different organi-zations’ websites, are referenced throughout the paper.

Canadian Breast Cancer Initiative (2002). Investigation and assessment of the “Navigator Role” in meeting the informa-tional, decisional and educational needs of women with breast cancer in Canada. Re-trieved June, 2008 from http://www.phac-aspc.gc.ca/publicat/navigator/pdf/NavigatorReport-eng.pdf. ISBN = 0-662-33132-X.

The authors of this paper aimed to iden-tify existing patient navigation programs through a literature search of articles pub-lished between 1980 and 2001 and inter-views with key infor-mants about patient navigation across

Canada. In addition to describing their findings on topics such as barriers to care and outcomes measured in the evaluation process, they also categorize studies according to three different types of navigation models. In the ap-pendices, a list of resources is provided, articles of interest are highlighted, and annotated bibliographies of the papers reviewed are provided.

Cancer Care Nova Scotia (2004). Cancer patient navigation: Evaluation findings. Retrieved June, 2008 from http://www.cancerpatientnavigation.ca/docs/Summary%20Evaluation%20report.pdf

This paper reports the process and impact evaluation of the first 18 months of the Can-cer Patient Program that was launched at three Canadian sites in 2002. Objectives of this evaluation included clarifying the role of the navigator, de-termining the effectiveness of processes used in navigation and measuring the impact of navigation on patients, health care professionals and the institutions where navigation was implemented. The evaluation was based on quantita-tive and qualitative data collection that incorporated input from stakeholders, such as patient navigators, community partners, staff and patients and their families.

Technical Reports

24

Literature—Technical Reports (cont’d)

Disparity Reducing Advances (DRA) Pro-ject, Institute for Alternative Futures (2007). Patient navigator program over-view, April 13, 2007. Retrieved March 20, 2008, from http://www.altfutures.com/DRA/Patient%20Navigator%20Overview.pdf.

This short paper pro-vides descriptions of several navigator pro-grams and toolkits for patient navigators. Programs described here include national programs under ACS, NCI/CRCHD, and CMS, as well as local programs. Tables are provided throughout to highlight each program’s location, partnering in-stitutions, type of cancer addressed, and type of navigator used. A comparison table of the reported programs is pro-vided at the end.

Institute of Medicine (IOM) (2007). Cancer care for the whole patient: Meeting psy-chosocial health needs. Washington, DC: The National Academies Press.

Although patient naviga-tion is not the focus of this IOM report, it does bring to light many of the psychosocial issues (e.g. transportation and financial difficulties, emotional issues, lack of health information) faced by cancer patients that patient naviga-tion has been designed to address. Top-ics covered include the effects of unmet psychosocial needs, appropriate health services and models for delivering care

and policy support for delivering psy-chosocial services. A report brief for health care providers, as well as order-ing information can be found at: http://www.iom.edu/CMS/3809/34252/47228.aspx

Sociobehavioral Research Centre, BC Can-cer Agency (2005). Patient navigation in cancer care: Final report. Retrieved June, 2008 from http://www.cancerpatientnavigation.ca/docs/WebFinalNavigation.pdf. ISBN = 1-896624-17-0

This small pilot study had two aims: (1) To gain a better under-standing about the need for patient navi-gation and the existing navigation models through a literature review and interviews and (2) To develop a test and pilot in-struments and tools to structure naviga-tor interventions. In spite of the small sample size, the authors concluded that navigation cannot be confined to a single model, but can be conducted in a sys-tematic manner that allows the needs of the patients to be met. The authors pro-vide recommendations on methods that could aid in this systematic approach. Some of the tools that were developed were found to be appropriate for use in future studies.

Technical Reports

25

Literature—Background Articles

Bairati, I., Fillion, L., Meyer, F.A., Hery, C., & Larochelle, M. (2006). Women's percep-tions of events impeding or facilitating the detection, investigation, and treatment of breast cancer. European Journal of Cancer Care. 12, 183-193.

Bao, Y., Fox, S., & Escarce, J. (2007). Socio-economic and racial/ethnic differences in the discussion of cancer screening: "Between-" versus "within-" physician dif-ferences. HSR: Health Sciences Research. 42 (3), Part I, 950-970.

Bastani, R., Yabroff, K., Myers, R., & Glenn, B. (2004). Interventions to improve follow-up of abnormal findings in cancer screen-ing. Cancer Supplement. 101(5), 1188-1200.

Caplan, L., May, D., & Richardson, L. (2000). Time to diagnosis and treatment of breast cancer: Results from the National Breast and Cervical Early Detection Pro-gram, 1991-1995. American Journal of Public Health. 90(1), 130-133. Freeman, H. & Wasfie, T. (1989) Cancer of the breast in poor Black women. Cancer. 63(12), 2562-2569.

Gwyn, K., Bondy, M., Cohen, D., Lund, M., Liff, J., Flagg, E. (2004). Racial differences in diagnosis, treatment and clinical delays in a population-based study of patients with newly diagnosed breast carcinoma. Cancer. 100(8) 1595-1604.

Hunt, L., de Voogd, K., Soucy, M., & Long-worth, J. (2002). Exploring loss to follow-up: Abnormal pap screening in Hispanic pa-tients. Cancer Practice. 10(3), 122-129.

Jandorf, L., Fatone, A., Borker, P., Levin, M., Esmond, W., Brenner, B., et al. (2006). Creat-ing alliances to improve cancer prevention and detection among urban medically un-derserved minority groups. Cancer. 107(8 Suppl), 2043-51. Kaplan, C., Bastani, R., Belin, T., Marcus, A., Nasseri, K., & Hu, M.-H. (2000). Improving follow-up after an abnormal pap smear: Re-sults from a quasi-experimental interven-tion study. Journal of Women's Health & Gen-der-based Medicine. 9(7), 779-790.

Kerner, J., Yedidia, M., Padgett, D., Muth, B., Washington, K., Tefft, M., et al. (2003). Realizing the promise of breast cancer screening: Clinical follow-up after abnormal screening among Black women. Preventive Medicine. 37, 92-101.

Background Articles

26

Literature—Background Articles (cont’d)

Lund, M., Brawley, O., Ward, K., Young, J., Gabram, S., & Eley, J. (2008). Parity and disparity in first course treatment of inva-sive breast cancer. Breast Cancer Res Treat. 109, 545-557. Polite, B., Dignam, J., & Olopade, O. (2006). Colorectal cancer model of health dispari-ties: Understanding mortality differences in minority populations. Journal of Clinical On-cology. 24(14), 2179-2187.

Richards, M., Westcombe, A., Love, S., Lit-tlejohns, P., & Ramirez, A. (1999). Influence of delay on survival in patients with breast cancer: A systematic review. The Lancet. 353, 1119-1126.

Shavers, V., & Brown, M. (2002). Racial and ethnic disparities in the receipt of cancer treatment. Journal of the National Cancer In-stitute. 94(5), 334-357.

Yabroff, K., Breen, N., Vernon, S., Meissner, H., Freedman, A., & Ballard-Barbash, R. (2004). What factors are associated with di-agnostic follow-up after abnormal mammo-grams? Findings from a U.S. National Sur-vey. Cancer Epidemiol Biomarkers & Prev. 13(5), 723-732.

Yabroff, K., Kerner, J., & Mandelblatt, J. (2000). Effectiveness of interventions to im-prove follow-up after abnormal cervical cancer screening. Preventive Medicine. 31, 429-439.

Background Articles

27

Getting Started III.

Many patients experience barriers to re-ceiving adequate health care. In addition to health-related issues, patients often ex-perience non-health related obstacles. Fi-nances, social support, literacy skills and transportation issues often seem insur-mountable to patients in crisis, as well as those in need of routine health care. Un-derserved and uninsured populations, as well as minorities, the aged and those with limited literacy skills may experience even greater difficulty navigating the health care system.

These barriers can ultimately affect not only the patient, but health care providers, health care institutions and the health care system itself. Patients may miss scheduled appointments, misunderstand preparatory instructions causing procedures to be re-scheduled and fail to follow treatment regimens, increasing the likelihood of worsening symptoms and possible hospi-talization. Failure to receive, process and act upon health-related concerns can be measured in patient census, patient acuity and the financial bottom line of health care providers, their institutions and the utili-zation review of insurance companies.

Things to Consider

Patient navigation helps to address identi-fied gaps and barriers experienced by pa-tients. It can help diminish or eliminate those gaps and barriers, thereby facilitat-ing optimal patient care and outcomes throughout the care continuum. The out-comes of patient navigation can be meas-ured by cost savings and patient satisfac-tion. Patient navigators have been identi-fied as an important weapon against dis-parities. As noted by Schwaderer and Itano, “Navigators can address insurance,

financial, and logistical issues (e.g., trans-portation, appointment scheduling, child or elder care). They can provide under-standable health education that may lessen fears of [cancer] diagnosis and treat-ment” (2007). When considering a patient navigation program there are five essential areas to consider:

• What are the gaps and barriers for your patient population?

• What have successful patient navigation programs done? • How will you fund a patient navigation program? • How will you staff a patient navigation program? • How will you evaluate the program’s effectiveness?

Investigating the Gaps and

Barriers for Your Patient

Population

Every institution is different. Even institu-tions with similar services and programs can vary by location, patient demograph-ics and institutional finances. Keep in mind that gaps and barriers may exist for both the institution and its patient

“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.” - Schwaderer & Itano, 2007

28

Getting Started (cont’d)

population. When considering the gaps and barriers experienced by patients, you cannot make any assumptions about what your pa-tients need or want. The best way to deter-mine your patients’ needs and wants is to ask them directly. Patient questionnaires and sat-isfaction surveys can illuminate gaps and bar-riers perceived by patients. An important note to remember is that gaps and barriers for your patient population may extend beyond the boundaries of your institution (e.g., transpor-tation, insurance, child care, etc.).

Learning from Successful Patient

Navigation Programs

Although patient navigation is still in its in-fancy, there already are lessons to be learned from programs that have achieved some suc-cesses. The most compelling rationale for im-plementing a patient navigation program within your institution can be found in the achievements of programs around the country.

“The Patient Navigation Program was estab-lished in Harlem, New York, in 1990 to ad-dress the dramatic disparities in breast cancer mortality among minority women in the com-munity. The success of the Harlem Patient Navigation Program has provided the impetus for the development of many similar patient navigation programs across the country and for federal support for patient navigation re-search to address the critical need for effective interventions to eliminate cancer health dis-parities, particularly among minorities and the underserved” (Freeman, 2006).

The Urban Latino African American Cancer (ULAAC) Disparities Project in South Los An-geles designed and implemented a patient navigator program for underserved cancer pa-tients in an urban, nonacademic community hospital setting. “Preliminary assessments of this program suggest that it has had a positive

effect on minority and low-income cancer pa-tients' experience with care and reduces barri-ers to care” (Steinberg et al., 2006). A rural, multi-site patient navigator program involv-ing five cancer institutions in Western Penn-sylvania identified and addressed the con-cerns and issues of rural patients that often differ from the concerns and issues of urban dwellers (Schwaderer & Itano, 2007).

Finding Funds for a Patient

Navigation Program

Funding your patient navigation program will depend on how you tailor your program. Once you have established the services you intend to provide, funding sources may be-come apparent. Currently, patient navigation is not a recognized reimbursed service (Vargas et al., 2008). You may need to incorporate a

Other Lessons Learned from

Leaders in Navigation

• An organizational needs assess-

ment is a necessary starting point

to identify gaps in services

• Promoting the program among

staff and the community will help

to get early buy in from physicians,

surgeons, and radiologists and

build patient interest

• Open dialogue between cancer

care staff and navigators will help

to ensure cooperation among all

members of the team and to es-

tablish more clearly defined roles

and boundaries

-Comments from The Patient Navigation

Workshop held in Philadelphia in 2007,

Reported in Pfizer Oncology’s Expert

Commentary from Linda Fleisher, MPH

(www.patientnavigation.com)

29

Getting Started (cont’d)

number of resources, such as grants and inter-nal institutional support to maintain your program.

Staffing a Patient Navigation

Program

There is no one definition to describe who a patient navigator should be or what that per-son’s duties will entail. Generally, there are two categories of patient navigators — clinical and non-clinical. The dynamics of each insti-tution and its patient population will dictate what professionals and/or community work-ers are best suited for your consideration as a patient navigator. Some institutions have cho-sen to utilize existing staff while others have found that a dedicated new-hire ensures a concentration of duties.

Once you have identified the gaps and barri-ers faced by your patient population, you will be better equipped to answer the question of how to staff the position of patient navigator. Regardless of whom you eventually hire, ap-propriate training in patient navigation, regu-latory requirements, institutional orientation, cultural competency and disease-specific training will need to take place before your navigator is prepared to assist your patients on their journey through the health care system.

Evaluating Your Program’s

Effectiveness

The old adage, “you can’t know where you are going unless you know where you have been” is very true. Evaluation of your patient navi-gation program’s effectiveness begins long be-fore you implement a program. You must first identify what issues your patient navigation program will address and then establish your current norms as a baseline. Pre-program questionnaires, surveys, and financial reports may provide concrete documentation of

areas in need of improvement.

After you have established the need for pa-tient navigation and as you begin planning your program, you must also put in place a plan for periodic, ongoing monitoring and evaluation. This ongoing monitoring and evaluation can then be measured against your original baseline data for evidence of change and improvement.

Improved timeliness to diagnosis, reduction of patient anxiety, and increased overall satisfac-tion are measurable benefits of patient naviga-tion (Ferrante et al., 2008). Patients have been receptive to and pleased with patient naviga-tion because it coordinates services and pro-vides them with guidance and support (Seek & Hogle, 2007). In addition, tracking the navi-gation program’s financial impact on your in-stitution can be an important measure of effec-tiveness. As one example, the Denver Health Community Voices measured service utiliza-tion, charges and reimbursements for under-served men and found that with a monthly program cost of $6,229 they realized a return on investment (ROI) of 2.28:1.00, a savings of $95,941 annually (Whitley et al., 2006). Established qualitative and quantitative meas-ures, along with new and creative measures, can be employed to evaluate your patient navigation program.

“The purpose of navigation is not to

replace or overlap existing roles, but

to complement them by filling in

gaps in services and proactively

facilitate the delivery of care to all

patients.” -Excerpt from Pfizer Oncology’s

Spring 2008 Expert Commentary

from Linda Fleisher, MPH

(www.patientnavigation.com)

30

Toolkits and Other Resources IV.

Tools to Build and Develop Your

Own Program

This section provides a list and descrip-tion of toolkits and other resources that you can use to develop or to supple-ment your own patient navigation pro-gram. The toolkits include materials that you can use to support your pro-gram and prepare navigators for their tasks. The websites offer the opportu-nity to find materials and up-to-date information through postings from ex-perts, news alerts or forums where pro-fessionals involved in navigation share their experiences. Some resources that are site specific can be adapted to non site-specific uses. All resources listed are accurate as of June 2008.

Cancer Patient Navigation: Care for Your Community

Audience: Organiza-

tions interested in promoting the con-cept and develop-ment of community-based patient navi-gation programs

Sponsor: C-Change, an organization com-prised of the nation's key cancer leaders from government, busi-ness, and nonprofit sectors

Description: This toolkit gives infor-mation about what patient naviga-tion is, and why it is important. It is intended to serve as a marketing tool for promoting the concept and

development of community based patient navigation programs, rather than detail how to create a program. The site provides links to different elements of the toolkit. A hard copy of the toolkit, which in-cludes the DVD video, can be or-dered at the website.

Content: The toolkit contains three elements: A video that engages the viewer

with the human, community, and organizational story of cancer pa-tient navigation. The compelling sto-ries of three communities of care (Oakland, California; Chicago, Illi-nois; and Jackson, Kentucky) work-ing to meet the needs of cancer pa-tients are told. The video also con-tains interviews with several experts on patient navigation.

A Web site that provides an over-view of patient navigation and houses links to resources and infor-mation. Cancer patient navigation documents, an overview of the bene-fits of cancer patient navigation to patients and organizations, recom-mended components and organiza-tional considerations when starting a patient navigation program, and re-sources such as a reading list, links and useful tools are all found on this web site. In addition, you will find downloadable pdfs of many key documents as well as a model press release and advertisements.

A press kit that contains promo-tional materials, press releases, ad-vertisements, and a brochure about cancer patient navigation.

URL: http://www.cancerpatientnavigation.org

Toolkits

31

Toolkits (cont’d)

Breast Health Patient Navigator Resource Kit

Audience: Facilities

that wish to start a navigation program for breast cancer pa-tients

Sponsor: The Health-care Association of New York State (HANYS)

Description: This toolkit includes comprehensive templates to help implement a breast health patient navigator program. It is designed to help facilities create a program that fits their individual needs.

Contents: The toolkit provides guides to establish the program, facilitate data collection and evaluation and generate media coverage, including: • Step-by-step program implemen-

tation guide • Powerpoint presentation to edu-

cate hospital management • Program description template

modifiable to facility’s needs • Patient navigator position de-

scription with sample responsibilities • Printed materials to advertise

program • Policies and procedures for spe-

cific functions and responsibili-ties

• Data collection tools, such as in-take forms, patient satisfaction survey and tracking tools

To Order: www.hanys.org/bcdp/resource_kits/pnresourcekit.cfm

Patient Navigation in Cancer Care: Guiding Patients to Quality Outcomes™

Audience: Program

champions (individuals who ini-tiate and support im-plementation of a pa-tient navigation pro-gram within a given organization) and navigators

Sponsor: Pfizer, Inc., with guidance from team of experts in field of cancer care, in cooperation with The Health-care Association of New York State (HANYS) and Dr. Harold P. Freeman, president and founder of The Ralph Lauren Center for Cancer Care and Prevention.

Description: The tool kit includes train-ing manuals to provide resources and support for program champions and to prepare patient navigators for their responsibilities.

Contents: This resource includes four manuals:

• Establishing a Patient Navigation Program: An Implementation Guide for the Program Champion. De-signed to assist the champion in promoting the concept of naviga-tion within an organization, it provides resources to help imple-ment the program

• Navigation Pathways: The Patient Navigator Training Manual. Clearly defines the role and re-sponsibilities of patient naviga-tors and provides resources to help them guide patients through the health care system

• Breast Cancer Pathways: A Resource Guide for the Patient Navigator. Contains appropriate information specific to breast cancer to

Toolkits

32

Other Resources

educate navigators on the special considerations of this disease. Includes tools and resources necessary to assist patients with breast cancer • Colorectal Cancer Pathways: A Re-

source Guide for the Patient Naviga-tor. Designed to educate naviga-tors about the special considera-tions of patients with colorectal cancer

URL: www.patientnavigation.com

C-Change: Collaborating to Conquer Cancer

Audience: Patient

navigators and organizations that wish to start a program

Sponsor: C-Change, an organization comprised of the nation's key can-cer leaders from government, busi-ness, and nonprofit sectors

Description: One of the underlying principles of C-Change is to lever-age the leadership and expertise of all sectors of society to eliminate cancer as a major public health problem at the earliest possible time. C-Change is both a forum and a catalyst for identifying issues and major challenges facing the cancer community and for initiating col-laborative actions to complement the efforts of individual C-Change Members. Among the resources on this site are the Cancer Patient Navi-gation: Care for your Community tool-kit (see Toolkits) and other publica-tions on patient navigation.

Content: Links to a variety of publica-tions, resources and organizations that focus on cancer prevention, re-search, and advocacy.

URL: http://c-changetogether.org

Other Resources

Other Resources

33

Other Resources (cont’d)

Breast Health Navigator.com, EduCare, Inc.

Audience:

Nurse navigators

Sponsor: EduCare Inc., North Charleston, South Carolina

Description: EduCare, Inc. provides periodic trainings for nurse navi-gators. This site gives informa-tion on these trainings, including certification in breast health edu-cation and strategic planning of a breast health center.

Content: Provides links to patient education products and a forum specifically for nurse navigators who have been trained and certi-fied by EduCare, Inc.

URL: www.breasthealthcare.com Harold P. Freeman Patient Navigation Institute

Audience: Individuals

associated with or-ganizations that may develop or expand patient navigation programs

Sponsor: The Harold P. Freeman Pa-tient Navigation Institute

Description: The Harold P. Freeman Patient Navigation Institute, launched in 2007 with a $ 2.5 mil-lion grant from the Amgen Founda-tion, is the first certification and training program for patient navi-gators. Through a 3-day training course, attendees are trained in the H.P. Freeman model of patient navigation and equipped with tools to tailor navigation to the needs of

their institutions. Content: Information about the Insti-

tute’s certification and training program, application form, fact sheets on the Institute and a background on patient naviga-tion

URL: www.hpfreemanpni.org

The Patient Navigation Research Program Resource Manual

Audience: Patient naviga-

tors Sponsor: National Cancer

Institute Description: Download-

able PDF of the Na-tional Cancer Insti-tute’s resource manual. This re-source manual was designed to provide a tool for patient naviga-tors to use when sharing informa-tion with patients facing cancer, specifically breast, cervical, pros-tate, and colorectal cancers. It pro-vides a list of NCI documents, na-tional organizations and a place for navigators to insert a list of com-munity resources available to their patients.

Content: NCI Patient Navigation Research Program Resource Manual

URL: http://ncipoetqa.cancer.gov/PatientNavigator/Index.cfm

Other Resources

34

Other Resources (cont’d)

Center to Reduce Cancer Health Disparities, Patient Navigation Program

Audience:

Patient naviga-tors and organizations that wish to start a program

Sponsor: National Cancer Institute Description: The site gives information

about patient navigation and the NCI’s Patient Navigation Research Program, which is aimed at devel-oping and testing patient naviga-tion interventions across the nation. Information on the research sites is provided. Links to the Northwest Native American Patient Naviga-tion Pilot Program are also on the site.

Content: Description of patient naviga-tion and its uses

URL: http://crchd.cancer.gov/pnp/background.html

Patient Navigation in Cancer Care: Guiding Patients to Quality Outcomes™

Audience:

Health care professionals and organi-zations inter-ested in learning about the benefits of patient navigation. This site is not intended for use by patients.

Sponsor: Pfizer, Inc. Description: Patient Navigation in Cancer

Care is intended to serve as a para-digm for creating patient naviga-tion programs across the United States. The content and structure of this Web site supplement that pro-vided in the multimedia tool kit,

Patient Navigation in Cancer Care: Guiding Patients to Quality Out-comes™, which is available through your Pfizer representative (see Toolkits). The site and toolkit have been developed to help any organi-zation implement a patient naviga-tion program. Registration (free) is required to access all areas of the websites including “Expert Com-mentaries” from those researching and implementing patient naviga-tion, “Best Practices” shared by or-ganizations who have successfully implemented navigator programs and other support tools and infor-mation specifically for navigators.

Content: This site has been developed to provide a broad understanding of patient navigation in cancer care. The site also provides guiding prin-ciples and models for individuals who are or who would like to be-come patient navigators in their or-ganization or community.

URL: www.patientnavigation.com Other Resources

35

References

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C-Change, PN Promotion Initiative Work-group (2005). Defining patient navigation. Retrieved June 2008 from http://www.c-changetogether.org/pubs/pubs/CPNDefinition.pdf

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Centers for Medicare and Medicaid Ser-vices (2006). Cancer prevention and treat-ment demonstration for ethnic and racial minorities. Retrieved June, 2008 from: http://www.cms.hhs.gov/DemoProjectsEvalRpts/downloads/CPTD_FactSheet.pdf

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Disparity Reducing Advances (DRA) Pro-ject, Institute for Alternative Futures (2007). Patient navigator program over-view. Retrieved March 20, 2008, from http://www.altfutures.com/DRA/Patient%20Navigator%20Overview.pdf Dohan, D. & Schrag, D. (2005). Using navi-gators to improve care of underserved pa-tients: Current practices and approaches. Cancer. 104(4), 848-855.

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References (cont’d)

Freeman, H. (2006). Patient navigation: A com-munity centered approach to reducing cancer mortality. Journal of Cancer Education. 21(Suppl.), S11-S14.

Ingersoll, S., Valente, S., and Roper, J., (2005). Nurse care coordination for diabetes: A litera-ture review and synthesis. Journal of Nursing Care Quality. 20(3), 208-214.

Jandorf, L., Gutierrez, Y., Lopez, J., Christie, J., & Itzkowitz, S. (2005). Use of a patient naviga-tor to increase colorectal cancer screening in an urban neighborhood health clinic. Journal of Urban Health. 82(2), 216-224.

Lantz, P., Keeton, K., Romano, L., & DeGroff, A. (2004). Case management in public health screening programs: The experience of the Na-tional Breast and Cervical Cancer Early Detec-tion Program. Journal of Public Health Manage-ment Practice. 10(6), 545-555.

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37

References (cont’d)

Images Cover

• Navigator assisting individual with red sweater, http://www.baltimoresun.com/media/photo/2008-03/37287481.jpg

• Navigator with woman and children, http://www.backushospital.org/assets/images/April%20HC/JoyceKuusela_Pastrana.jpg

• Navigator speaking with woman with bandana, http://www.cancercare.ns.ca/images/image3.jpg

Page 4 • Navigator teaching woman with green

sweater, http://www.brighamandwomens.org/surgicaloncology/Images/CBC%200107_medium.jpg

Page 5 • Doctor speaking with Patient and Advo-

cate, http://www.pulseofny.org/images/bb.jpg

Page 10 • ACS logo, http://www.pac3.org/

images/acslogo.gif • CMS logo, http://

www.strengthforcaring.com/files/CMSDHHS_193x95.jpg

Page 11 • PNRP logo, http://crchd.cancer.gov/

pnp/pnrp-index.html • Nurse teaching woman about glucose

monitor, http://www.sjwh.org/images/5-7DiabetesEd.jpg

Page 12 • Navigator teaching woman with striped

shirt, http://img.coxnewsweb.com/B/04/92/00/image_7000924.jpg

Page 18 • Navigator with woman in plaid blouse,

http://www.anmed.com/images/cancercenter/PatientNavigator.jpg

Page 19

• Navigator assisting man, http://www.parklandfoundation.org/atf/cf/%7B79DEB742-218D-459D-A493-627B4515621B%7D/Jeannette%20Web1.jpg

Page 20 • Nurse with chart, http://

office.microsoft.com/en-us/clipart/default.aspx

Page 21 • Lay navigator with African American

woman, http://ralphlaurencenter.org/graphics/content/services_patient_1.jpg

Page 22 • Nurse speaking with woman receiving

chemotherapy, http://www.holy-cross.com/Bienes/images/Chemotherapy100.jpg

Page 25 • Physician talking, http://

office.microsoft.com/en-us/clipart/default.aspx

Page 26 • Man speaking with elderly couple,

http://www.bizbuysell.com/work/331710/pacounselingse.jpg

Page 32 • Helping Hands, http://

www.helpinghandii.org/HelpingHands.jpg

authors and credits - fox chase cancer center · while the writ- ings assembled here ... harold...

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