Download Organization and Financial Support of Rural Cancer Care Navigation Models

Organizational and Financial Support of Rural
Cancer Care Navigation Models in Appalachia
Virginia Cancer Plan Action Coalition
Sharon K. Dwyer, Appalachian Community Cancer Network
Ann Duesing, University of Virginia at Wise
Nila Saliba, Cancer Center at University of Virginia
Christi Sheffield, Manager, Virginia Comprehensive Cancer Control Program
Project Coordinators
April 30, 2011
1 Introduction Cancer care is a daunting experience for most patients and their families—not only because of the
physical and emotional distress but because of the labyrinthine system of modern healthcare. A recent
development loosely described as “patient navigation" is becoming more and more prevalent as a means
for healthcare providers to guide consumers (patients, survivors, families, and caregivers) in accessing
services and then charting a course through the healthcare system in a manner that overcomes barriers to
quality care. Navigation can be provided by a professional, such as a social worker or nurse, or by a
peer trained and supervised by a professional to assist consumers throughout the care continuum.
Navigation services may include arranging financial support; arranging for transportation or childcare ;
identifying and scheduling appointments; coordinating care among providers (such as screening clinics,
diagnosis centers, and treatment facilities); arranging for translation or interpretation services;
coordinating services among medical personnel; ensuring that medical records are available at each
appointment; and coordinating other needed services or supports.
Patient navigators can make the difference especially for patients from underserved populations.
Evidence shows that, in addition to unequal access to healthcare, racial/ethnic minorities and underserved
populations do not always receive timely, appropriate advice and care when confronted with a cancer diagnosis.
The Virginia Cancer Plan Action Coalition (CPAC) has been addressing the issue of navigation as
described in the Virginia Cancer Plan: “Virginians will have increased access to and utilization of patient
navigation and support services". Specifically, the CPAC Treatment Team has been gathering information about
cancer navigation programs throughout the state, including the Appalachian region. This work has provided
information on navigation programs and services located in hospitals, oncology practices and the community.
With support from the Virginia Comprehensive Cancer Control Program, CPAC is locating and documenting
navigation programs in order to create a web-based directory of navigators and cancer navigation programs.
For CPAC, the current project provides an opportunity to present information about navigation programs
in the Appalachian region of Virginia, identify best practices being utilized in other areas of Appalachia, discuss
the diversity of navigation programs throughout Appalachian states, disseminate the information through a
regular e-letter and the Comprehensive Cancer Program, provide CPAC members with the tools to initiate,
develop and enhance navigation networks, identify colleagues in the region for follow-up contacts and
information, and develop ways to serve clients with strategies for interstate navigation contact and services.
This project also expands the CPAC’s work related to cancer navigation by convening partners from
Appalachian states to provide an opportunity to:
• Identify the range of cancer navigator programs throughout each state and region,
• Document details about the range, variety, operation and financing of cancer patient navigation
programs,
• Bring a variety of stakeholders together to brainstorm and discuss how to further the development,
efficiency and effectiveness of patient navigation efforts,
• Develop a network of colleagues with interest in cancer patient navigation and a “connectivity”
between efforts
• Enhance development of a broader network of patient navigation efforts in Appalachia,
• Identify current efforts and future strategies for cancer navigation to work across state lines.
Answers to Project Questions
This project was developed in several phases. First, the coordinating team was formed and, with CPAC,
developed a proposal as well as a plan for accomplishing the project goals. Next, the project team
identified the states in Appalachia (Kentucky, North Carolina, Pennsylvania, Tennessee, Virginia, West
Virginia) which were potential participants and listed contacts who would be essential for identifying
cancer navigation programs in their states and key informants for providing the information needed.
The coordinating team divided the state contacts and informed each one about the project and
2 information needed. At the same time, project questions were reconfigured into an electronic grid or
matrix format and distributed to contacts for re-distribution to key informants within their respective
states. Stakeholders and state partners were asked to disseminate the grid, compile the initial
information in drafts, identify potential attendees for a face-to-face working meeting, and bring the
completed grid drafts to a regional meeting in Bristol, Tennessee, in October 2010.
Individuals familiar with cancer navigation in the Appalachian states of Kentucky, North Carolina,
Pennsylvania, Tennessee, Virginia, and West Virginia attended the project's Cancer Navigation Forum.
Draft findings were distributed and intrastate groups spent the first half of the day-long session
reviewing, editing and completing grids plus responding to questions about cancer navigation in the
Appalachian regions of their states. Ten categories were included in topics for the grids; three other
more open-ended, related questions followed the grids. The format provided a substantial amount of
information somewhat similar among many of the participants, but also often expansive and highly
detailed. The project team was then faced with the daunting task of summarizing grid information into
an easily read and comprehensible form. To facilitate this process, the team hired a graduate student in
Library Science from the Appalachian region of far southwest Virginia. With his assistance, the grid
format and information collected was reviewed and reorganized into a more succinct description of
Patient Navigation Models in the Appalachian Region using a qualitative narrative analysis.
Categories for the Grids (see attached appendix) were:
1) Prevalence and Coverage
a) geographic
b) breadth
c) crossing state lines
2) Continuum of Care
a) types of navigators, responsibilities and location
b) navigation continuum from entry point forward
c) provider issues
3) Fiscal Issues
a) public/private
b) reimbursement
c) paid and unpaid volunteers
4) Evaluation
a) measurement types
b) benchmarks, realistic goals and objectives
c) challenges and barriers
5) Connection to State Cancer Plans
a) addressed in state plan
b) implementation and documentation in state plan
c) best practices identified through connection to state plan
From the grid category narratives, the original descriptive questions under main categories were
converted to summary topics. Narratives were placed first under grid categories then under main topic
divisions using paraphrasing or abbreviations for lengthy text. Where possible, succinct bulleting of
information was used to capture main topics and allow readers to follow more easily. This also enabled
readers to glean insight into program similarities and distinctions more quickly.
Several iterations of this process were completed. The grids were sent to each participant to review, revise,
update and return to the group for discussion at a follow-up meeting in Bristol in February 2011. Further updates
were made to the grid summaries during and after that meeting.
3 Responses to Project Questions
QUESTION 1: (for additional information see attached grids) What is the prevalence of cancer
patient navigator programs serving rural Appalachia? What populations, types of cancers, and
steps in the cancer continuum of care do they address?
Cancer navigation programs and services are prevalent throughout the Appalachian regions of the
responding states (Kentucky, North Carolina, Pennsylvania, Tennessee, Virginia and West Virginia),
although geographic coverage and the populations served vary widely. Recommendations and best
practices include (see grids for additional information from specific states):
• Create or participate in regional coalitions or consortiums to support navigators covering large
geographic areas, enabling the sharing of resources and facilitating referrals.
• Create partnerships with providers and community agencies for more seamless care.
• Shadow navigators at larger institutions or those with established navigation programs as a
means of education and training.
• Invite organizations that work in the cancer community to a site visit to learn more about
navigation programs and services and involve them in initial patient orientation.
• Gather baseline information (surveys, focus groups with patients, caregivers and providers) to
build the program and identify needed services.
• Orient the entire staff of healthcare organizations about the patient navigation program and
services.
• Provide information to a broad spectrum of community and healthcare organizations, such as the
Social Security office, social services, community health centers, health departments, and area
agencies on aging, for potential connections to services and for referrals.
• Use technology to broaden the navigation reach (FAXes, cell phones, telemedicine).
• Recruit and train volunteers to meet one-on-one with patients.
• Listen patiently to client’s needs and work to meet those needs.
• Hire community health workers from the local area who know available resources and can
network with local providers and social service agencies.
• Utilize consortium groups.
Kentucky: Kentucky provides cancer navigation through three separate organizations in multiple
settings including the American Cancer Society (ACS), Kentucky Homeplace and Kentucky Pink
Connection. ACS navigators cover all Appalachian counties, all cancers and all cancer patients. The
primary focus is on treatment, survivorship and general supportive care, meeting with patients, accessing
services and connecting patients to proper support. Through the Kentucky Homeplace program based at
the University of Kentucky, 36 lay navigators serve 58 counties in several regions of the state. The
family healthcare advisors based at the Homeplace cross the continuum of care and handle a multitude
of client and family needs. They visit patients’ homes and assess client and family needs. They assist
with accessing medications, locating a medical base, and other needs such as housing, clothing and food.
Navigators with the Kentucky Pink Connection provide statewide services through the Susan G. Komen
Foundation in 58 counties and through the Breast Cancer Trust Fund in the remaining 62 counties. They
cover multiple patient issues from outreach to survivorship. They also complete an initial interview and
intake with the client, analyze need and barriers, and work to provide solutions. King’s Daughters
Medical Center in Ashland provides navigation services for patients from Boyd, Greenup, Carter,
Rowan, Johnson, Lawrence, Floyd and Lewis Counties diagnosed with digestive tract (esophageal,
4 gastric, pancreatic, liver and colorectal) cancers who are receiving radiology studies and treatment.
There is also an emphasis on colon screening navigation for individuals older than 50. Bon Secours
Kentucky Health System’s Our Lady of Bellefonte Hospital in Ashland provides breast navigation
services for clients from Boyd, Carter, Elliott, Greenup, Lawrence and Lewis Counties in Kentucky,
Scioto and Lawrence Counties in Ohio, and Wayne County in West Virginia. Target populations include
anyone with breast cancer (including males). Other services include those related to breast pain, genetic
testing, biopsy care, SBE instruction and CBE for patients who do not have a primary care doctor.
Additionally, the Markey Cancer Center at the University of Kentucky plans to hire a navigator.
North Carolina: North Carolina's nurse navigator association is mentioned in the state’s cancer plan.
In the Appalachian region, there are a total of 52 navigators at different sections of the cancer
continuum: 3 screening navigators, 32 navigators focusing on diagnosis, and 17 navigators focusing on
treatment. All Appalachian counties are covered for breast navigation. No navigators focus on
survivorship, although some guidance is available from treatment navigators. Patients as well as
families and healthcare providers are served by cancer navigation services. Those served by navigation
services vary by specific program and location but are predominantly (20 percent to 75 percent) from
underserved, mainly rural, areas.
Pennsylvania: There is no firm data about the number of patient navigators in Pennsylvania. Coverage
varies across the state and throughout the Appalachian region depending on the focus of the host
community or organization, regional hospital, mammography department or cancer center. Many
programs based in mammography centers focus on breast cancer and address early detection and
diagnosis, although some also include treatment. Patient navigators based at cancer centers focus
primarily on treatment; few include survivorship or end-of-life issues. American Cancer Society (ACS)
navigators are funded in university-based cancer centers in Philadelphia and Hershey, with one planned
in Pittsburgh. Navigators in oncology settings are based in Philadelphia plus western and central
Pennsylvania. Gaps in the continuum of care seem to exist after an individual is diagnosed.
Tennessee: Three health systems and the American Cancer Society in northeast Tennessee and
southwest Virginia provide some form of navigation services for breast, lung and gastro-intestinal
cancers. Newly diagnosed patients at Wellmont Health System receive in-depth navigation services.
Navigators utilize American Cancer Society referral information. Any individual with cancer referred to
Wellmont is offered navigation services and their residence is not considered. The Wellmont Health
System has navigators in Kingsport and Bristol. Laughlin has a radiation oncology department patient
navigator who works with all cancers. Johnson City Medical Center employs one breast navigator.
Currently, no navigation focuses on survivorship issues.
Virginia: The Appalachian region of Virginia is provided cancer navigation services by two lay
navigators—one who is University-based outside the region and one who is located at a community
cancer center in the region—who work together to coordinate services. Services also are provided to
individuals travelling outside the area for treatment. Two health systems based outside of Virginia—
Mountain States and Wellmont—also have navigation services in the region. A breast navigator at
Johnston Memorial Hospital Cancer Center in Abingdon plus case managers affiliated with Mountain
Laurel Cancer Support and Resource Center in Big Stone Gap serve three counties in southwest
Virginia. The University of Virginia Cancer Center employs a patient navigator serving southwest
Virginia patients, an ACS patient navigator, and nurse navigators.
5 West Virginia: Various navigation services are offered throughout the state. The American Cancer
Society has five to seven cancer resource centers staffed by lay navigators. Hospital navigators include:
nursing staff at Mary Babb Randolph Cancer Center, two or three ACS navigators at smaller hospitals,
and one navigator at St. Francis Hospital in Charleston. The Breast and Cervical Cancer Screening
Program (BCCSP) covers all 55 counties for uninsured and underinsured residents with a focus on
prevention, early detection and quality of life throughout treatment. ACS navigators address all cancer
sites for anyone who seeks help but with a focus on the under- or uninsured. Their main focus is point
of diagnosis through treatment, survivorship and end-of- life. Screening navigators include four
focusing on breast and cervical cancer and one navigator/survivor affiliated with the West Virginia
Cancer Coalition.
QUESTION 2: (for additional information see attached grids) How does the operation of
navigator programs vary throughout the continuum of care? What are the roles and
qualifications of navigators? How do patients enter the program?
Operations of cancer navigation programs in the Appalachian region vary widely. Programs may be
administered and operated through individual hospitals, cancer organizations, community non-profit
organizations, community cancer centers, university-based centers, the American Cancer Society, cancer
coalitions, state health departments, or healthcare systems. Each system defines the role and designates
the qualifications for its program eligibility and competencies for its navigators. Some navigators
specialize in specific cancer(s), especially breast. Recommendations and best practices include (see
grids for additional information from specific states):
• Inform the public, patients and healthcare providers about integrating navigation into prevention,
education, early detection and diagnosis. Many individuals see services focusing on treatment,
survivorship, palliative care and end- of- life care.
• Connect patient to navigation as close to diagnosis as possible to identify needs in a timely
manner, manage anxiety, and increase success in addressing the barriers.
• Develop non-clinical navigation to complement the clinical approach that most hospitals provide.
• Enhance the continuum of care by communicating with care providers connected to each
segment: imaging, oncology, primary care physician, health educators, nursing.
• Use volunteers to increase and augment resources by identifying new resources in local
communities or working shifts at a medical center or cancer resource center to meet with patients
and learn about their needs, to refer patients to information and local resources, to distribute
available gift cards, and to help with support groups.
• Monitor tracking systems to confirm patients entered into database, immediate needs identified,
barriers resolved.
• Reduce time between services by having a navigator take patients to appointments after the
initial exam, follow them through diagnosis and treatment, assist with financial problems, and
streamline access to care.
• Encourage BCCCP and nurse navigators to collaborate.
• Create an ongoing planning committee to work out procedures and implement needed changes
for navigator program.
• Utilize electronic data link
Kentucky: The type of navigators and their roles include: certified (Harold Freeman training program)
community navigators, who guide patients from outreach to survivorship; ACS navigators working with
patients from treatment through survivorship; family healthcare advisors, who track patients from
screening through treatment and assess client and family needs including identifying providers,
6 accessing medications and offering other support services; breast cancer nurse navigators following
clients from abnormal exam through survivorship; and digestive health navigators who cover multiple
areas ranging from education for appropriate cancer screening through diagnostic workup, treatment
phase and survivorship. Qualifications for each type of navigator are:
• certified community health workers—communication skills and community connections
• paid ACS navigators—B.S. and experience with cancer patients
• family healthcare advisors—at least a GED, computer skills and training on database HIPPA
and IRBs. Patient entry points include: local free clinics, health departments, churches, national
ACS toll-free number and other referrals.
• nurse navigators—RN, MSN, OCN, APRN
North Carolina: North Carolina has community health workers who provide screening outreach and
trained lay health advisors who work from free-standing non-profit organizations. RNs in health
departments work with the BCCCP; some RNS who work at cancer centers provide treatment
navigation, radiology navigation for breast patients, and outpatient navigation for colon and lung cancer
patients. Social work navigators provide resource navigation and psychosocial assessments and also
may be based in hospital cancer units to assist with oncology care, chemotherapy and radiation.
Community health workers, social workers, and RNs provide a range of services from screening
outreach through resource navigation and psychosocial assessments to treatment navigation by cancer
site and treatment phase. Entry points include screening sites, at surgery, and when radiation or preappointments for medical/radiation oncology appointments are made. Families and caregivers are often
included.
Pennsylvania: Some navigators specialize in breast issues while others focus on all cancers. Many
navigators are nurses while others have social service backgrounds and could be trained community
volunteers. Navigation falls into the following categories:
• Outreach navigators—increase awareness and education
• Clinical navigators—diagnostic and treatment
Navigation may include family and caregivers. It typically is located at community and regional
hospitals, mammography departments, outpatient diagnostic centers, oncology centers, cancer centers
and in outreach programs or grant-funded research. Many cancer patients, families and caregivers get
involved in navigation at the point of screening, diagnosis or treatment when there are barriers to
understanding and participating. Some newly diagnosed individuals are referred from a radiologist but
some are not identified until they are getting radiation after completing surgery and chemotherapy. Lay
navigators are not typical but show great potential if trained effectively to work as part of the treatment
team. One program (Centre County) actually started with only a lay navigator but after four years the
need increased to the point that a nurse navigator was added .
Tennessee: Navigators vary by cancer specialty such as breast, gastro-intestinal, lung and cyber-knife.
Navigators attend weekly multidisciplinary tumor board meetings. Although no lay navigators are used,
individuals supplement navigation by providing services such as transportation. Entry begins with
physician referral either through work up or when diagnosis is confirmed. There seems to be a need for
a more formal process or 'gatekeeper' to provide the patient and family access to patient navigator
services. Currently there are no "lay navigators" (with that formal term). However, lay individuals are
used to supplement navigation by clinical specialty for support, transportation, and other services.
Virginia: Patients connect with navigation services—community-based, paid lay navigators, nurses and
social workers—in a variety of ways and at a variety of entry points. Lay volunteers support such
resources as lodging and transportation. University hospital-based navigators attend weekly
7 multidisciplinary tumor board meetings. Cancer patients and/or family members often contact the
Community Cancer Resource Center directly. At the SW Virginia Cancer Treatment Center, the
university-based navigator sees most patients during the oncologist’s diagnostic workup. Navigators
with the Mountain States Health Alliance identify breast cancer patients during the diagnostic workup
and may be the healthcare professional who discusses their diagnosis and treatment plan before
coordinating the ensuing treatment.
West Virginia: Navigator roles include: 1) ACS navigators, who complement existing care
management and services, 2) breast and cervical navigators, including RN case managers, and 3) a
social worker through the catastrophic illness commission. An example of responsibilities include:
enrolling into Medicaid, assessment, monitoring clinical records, providing education about treatment
options, explaining community resources, advocacy, and identifying appropriate providers. Navigators
working with the BCCSP cover the entire state with the main focus on prevention, early detection, and
quality of life through treatment. ACS navigators address all cancer sites and help all who ask, targeting
the uninsured or underinsured. The main focus is at the point of diagnosis, through treatment and
survivorship or end-of- life.
QUESTION 3: (for additional information see attached grids) How are the programs financed
and through what types of organizations? Are patients charged for services? How are services
reimbursed (e.g. third party payments available, grant sources, organizational sponsorships,
etc)?
Cancer navigation is an evolving part of the cancer care system. Programs and services vary widely as
to types of services, qualifications and funding sources. In general, patients and families are not charged.
Sources of funding include: grants, state funding, ACS, foundations, and individual healthcare
providers. Navigation services may be embedded within many positions with varied pay sources.
Facilities often support ACS navigators with in-kind contributions such as computers, desks and
phones. Recommendations and best practices include (see grids for additional information from specific
states):
• Recover downstream revenue related to navigation services through screening and diagnostic
mammogram, minimally invasive biopsy, breast cancer surgery and reconstructive surgery.
• Approach private donors and foundations that have a passion for supporting tangible services.
• Provide patient testimonials and stories as feedback for funders.
• Fund positions from more than one source; 50/50 splits useful.
• Consider navigation a value-added service and downstream revenue producer.
• Support paid navigator with additional staff.
• Fund program with grants.
Kentucky: ACS resources offered to patients vary by location but may include grants to treatment
facilities for transportation, gas cards, and free lodging at Hope Lodge in Lexington. Grants, the ACS,
the state legislature, and the Kentucky Department of Health have provided funding for navigation.
North Carolina: Initially, navigators were paid for by grants and many now are paid by hospitals and
endowments based on quality improvement issues. Navigators also are included in the funding from the
state legislature for cancer research.
Pennsylvania: Patient navigation is not currently reimbursed by third party payment. Komen and
Avon grants have funded initial phases of breast health navigation for some facilities. Some hospitals
8 have funded positions internally to improve patient satisfaction. Many services are free. Many paid staff
have clinical skills dealing with specific cancer-related symptoms, treatments and problems. Lay
navigators can, for the most part, provide assistance with resources to overcome barriers.
Tennessee: Navigation is considered part of serving patients and providing services to patients and
their families to relieve stress and confusion and so usually is provided by healthcare systems to
improve patient satisfaction. Navigation services are not reimbursable or recognized by payers. With
no financial reimbursement for navigation services or programs, it is considered a value-added service
and downstream revenue producer.
Virginia: Some grant funding is available but there is no third-party reimbursement. Some services
provided by nurse navigators are reimbursable, such as limited payments for education or counseling
associated with treatment, and evaluation and management provided by nurse practitioners. Payers
including Medicare and Medicaid may recognize hospital facility fees. Some organizations are able to
provide gas cards and discounted drugs.
West Virginia: There is no reimbursement for direct patient navigator services through Medicare, Medicaid or
private insurance. Some navigator positions are supported by private foundations such as Avon and Komen. The
cost of ACS navigators is shared by the two hospitals and ACS. Patient navigation services are also embedded in
many positions throughout the state with various pay sources.
QUESTION 4: (for additional information see attached grids) Have cancer navigator programs
serving the Appalachian regions of states been evaluated? If so, what measures of success have
been identified? What difficulties are identified by Appalachian patients/communities and health
providers/systems that navigator services are intended to address?
There is no uniform, culturally appropriate tool or system designed and tested for evaluating cancer
navigation programs in Appalachia. Project participants indicate that there is a wide range of indicators
(both quantitative and qualitative), methods and objectives used. Development of easy-to-use
instruments, consistent objectives and useful indicators that could be applied across a variety of
programs and settings is seen as highly desirable. Recommendations and best practices include (see
grids for additional information from specific states):
Process
• Use patient satisfaction and continuity of care as measures.
• Follow ACS evaluation procedures as a model.
• Standardize reports to gather information on people using navigation services.
• Use specific comments and feedback from patients for guidance.
• Build strong relationships, which help when interacting with patient or healthcare provider.
• Structure navigation to begin with one-on-one relationship from exams through end of care.
• Evaluate navigation with comparable data, although this isn’t possible in most rural areas.
Outcomes
• Evaluation of navigation services and programs has shown
o Reduced delays in care, number of missed appointments,
o Decreased time from detection to diagnosis, loss of patients, anxiety and fear
o Improved symptoms management, quality of life, participation in clinical trials, patient
satisfaction, cost effectiveness, patient retention, access to care, treatment compliance
through prescription assistance
9 o Increased number of patients completing treatment, provider/nurse time, and referrals
Kentucky: Navigation programs are evaluated through such activities as patient and provider
satisfaction surveys, number of patients seen, and number of services utilized. Measures of success
include number of patients reached, patient satisfaction, types of assistance obtained, number of
screenings, number of financial consults, updated trainings, and awards and honors. Challenges include
pre-existing conditions, coverage of preventative screens, policies limiting institutional lobbying, lack
of insurance coverage, transportation, and language.
North Carolina: Measures include patient satisfaction surveys, tracking time between services, number
of and demographics of patients served, volume and types of referrals. Challenges include measuring
retention of patients and developing a patient survey of needs.
Pennsylvania: Evaluative information collected includes number of patients served, time between
detection and diagnosis and between diagnosis and treatment, number of missed appointments, number
of patients completing treatment, and following referral sources to find out how patients are learning
about navigation. Measures of success include decreasing the time for mammography results, or
decreasing the time between diagnosis and surgical consult, reducing missed appointments, improving
symptom management, patient retention and satisfaction, and increasing participation in clinical trials.
Other care pathway timelines that could be monitored include rate of mammography call back,
ultrasound utilization, and pathology turnaround. Identified challenges include access issues such as
transportation, lack of insurance, cost of medications, trust issues and fatalistic attitudes. The biggest
challenge is finding or developing patient tracking that captures important data. Another problem is
losing connection to the nurse navigator after diagnosis and after surgery. Strategies to address this
problem have included organizing a knitting circle and journal-writing group, establishing a support
group and developing a post-op visit with patient and family.
Tennessee: Patient feedback is collected by a Quality of Life survey sent every six months.
Navigation programs are evaluated through such activities as patient and provider satisfaction surveys
and focus groups. Measures of success include timeliness of diagnosis to staging and staging to
treatment, treatment options and patient satisfaction surveys. Challenges include funding a position that
is not revenue-generating and meeting at the patient's convenience when there are so many practices,
and 'turf' issues with physician practices.
Virginia: Measurement collected includes assistance provided to individual patients, patient
satisfaction surveys, quantity and type of assistance offered based on home region, and patient volumes.
Measures of success include patient volumes and satisfaction, time from test to diagnosis and diagnosis
to treatment, screening rates, stage at diagnosis, and the number of patients who receive either a
definitive negative diagnosis or a visit with an oncologist. An identified barrier is the inability to collect
the same data from disparate organizations in order to analyze and measure against standard objectives.
West Virginia: Navigation programs are evaluated through such activities as tracking the time
between services, tracking the number of patients who completed care, patient satisfaction surveys,
missed appointments, number of referrals, number of patients seen, and number of services utilized.
BCCSP measures time from screening to diagnosis, diagnosis to treatment, treatment to disenrollment
and patient satisfaction surveys. Measurements are related to CDC guidelines. ACS collects data on
10 the number of constituents served, number of services, number of referrals provided, follow-up
measures within a time period, value of follow-up.
QUESTION 5: (for additional information see attached grids) Is cancer patient navigation
addressed in the state's cancer plan?
The ways in which cancer navigation is addressed in state cancer plans varies widely. In some states,
navigation is explicitly named, defined and described in the goals and objectives. In other states, the
concept and the services provided by cancer navigation are addressed but not described as navigation.
Recommendations and best practices include (see grids for additional information from specific states):
• Connect navigators through a network, the web, and social media-based methods to improve
connections and communication.
• Base the cancer navigation network within the state cancer coalition.
• Offer navigators or programs direct membership in coalition.
• Create regional community coordinators.
• Have regional and state coalitions.
Kentucky: Patient navigation is included in the screening and early detection, treatment and care, and
the quality of life sections of the state cancer plan. In the screening and early detection section, the
focus is on using navigators to promote colorectal cancer screenings and to increase the use of
navigators by health providers for colorectal cancer screenings. In the treatment section, an expanded
network of navigators is encouraged to increase access to quality cancer care. In the quality-of-life
section, one objective is to establish baseline data about facilities that offer navigation, develop a
working definition of cancer navigation, survey coalition member organizations about the presence and
utilization of navigation services, and identify best practices in cancer patient navigation.
North Carolina: Specific goals and objectives concerning patient navigation are included in the plan,
and the Division of Public Health evaluates and track the implementation. The North Carolina
Oncology Navigator Association has been formed. Regional community coordinators track and provide
resources and linkages to best practices.
Pennsylvania: Improving the quality of life for cancer patients is a priority and navigation is seen as
playing an important role, although often not explicitly named as navigation. Components of patient
navigation fit well under areas of the plan designated as Screening and Diagnostic Follow-up, Treatment
and Care Delivery, and Quality of Life: Survivorship to the End of Life and Access. For example, a
pilot navigation program being developed at Fox Chase Cancer Center addresses objectives within the
Quality of Life section. Efforts to gather navigators through a network, newsletter, web and social
media-based methods show promise for connecting navigators, documenting efforts, and developing a
standard of care. It is unclear whether navigation efforts are being documented under the current plan
but will be in the future.
Tennessee: Patient navigation is not specifically mentioned but the issues are addressed under
Treatment and Care, Survivorship and Disparities. There is no systematic documentation of the
navigators’ connection except for the Wellmont team's involvement in the cancer control plan at both
the state and local level.
Virginia: One of the of goals of the Virginia plan is that cancer patients will have access to integrated,
multidisciplinary, evidence-based cancer care. To achieve that goal, Virginia is working to increase
access to and utilization of patient navigation. Documentation is addressed informally at the annual
11 coalition meeting. No hard data is collected in a rigorous manner but in the future this may be
coordinated by the Virginia Comprehensive Cancer Control Program.
West Virginia: Patient navigation is listed in the Quality of Life section and the goal of developing,
testing and promoting a formal navigation system by January 2009 has been met. The state cancer
coalition is developing a patient navigator network open to all interested organizations and individuals.
Statewide meetings were held in 2009 and 2010. No definition of patient navigation is specified. The
coalition’s Quality of Life committee oversees all activity related to patient navigation. Activities are
documented through quarterly reports
Discussion
What other questions arose that East Tennessee State University (ETSU) didn't ask? What answers did
you find? What remains to be answered?
1) Are there regular education and training opportunities for navigators?
• It is often difficult to find specific education and training for navigators other than local and
national oncology nursing societies. Pennsylvania is sponsoring bi-annual webinars focused on
topics of interest among members of the patient navigation network. West Virginia offers
workshops for nurse clinicians and social workers and a yearly meeting is planned to share best
practices and conduct education sessions. The opportunities are publicized on several listservs
and mailing lists as well as to cancer coalition members. The ACS offers training for patient
navigators. Nurse navigators are able to become certified as Breast Cancer Navigators.
2) What opportunities are there for networking and communication with other navigators, families,
patients, survivors, health providers?
• The Pennsylvania Patient Navigation Network recently started a website, Facebook page, blog
and Twitter account.
• Tennessee navigators have a resource list of referrals, other navigators, etc. Wellmont Health
System has support groups and activities to promote its navigation program as well as wellness
in the community. An opportunity to cooperate with other navigators would be beneficial and an
Appalachian regional group might be helpful due to the geographic location compared to larger
metropolitan areas.
• A listserv has been developed in West Virginia, regular quarterly phone meetings to share
information are held, and a steering committee was developed.
• In Virginia there are some opportunities to network through the state cancer coalition.
3) How would a regional cancer navigator network benefit you, your organization, clients, and others?
• Provide a mechanism for referrals to local services and assist in meeting patient needs for
medicines and transportation
• Provide an opportunity to exchange ideas, peer support, networking, benchmarking and
educational opportunities
• Help identify gaps in the continuity of care
• Provide a support and educational system as well as an opportunity to network, share resources
and help identify Appalachian-appropriate community-based measures.
4) What are the challenges for navigators working across state lines?
• Navigating research facilities, hospitals, and social services
12 •
•
•
•
•
•
Confusion about insurance coverage and financial issues among states
Issues related to HIPPA and confidentiality
Efficient system to manage the transfer of necessary information to providers
Transportation—either no volunteer drivers or inability to cross state lines
Finding navigators, funding salaries and reimbursement
Childcare and elder care
Some ways to deal with the financial issues are: providing Visa cards to pay for transportation, lodging
and other needs, and referring patients to organizations such as ACS, United Way, and local prescription
assistance programs. Methods of insuring confidentiality are following HIPPA regulations, meeting
IRB requirements, and conforming to institutional rules of electronic transmissions. Referrals to
navigators can be handled by word of mouth, through providers, among health departments, and through
print media.
5) What is unique and different about cancer navigation in Appalachia?
The following issues were identified as critical to the future success of cancer navigation:
• Standardized criteria, measurements and data collection
• Improved ease of data collection
• Development of a scope of practice and a plan for implementation to facilitate navigator
interactions and relationships with practitioners
• Development of a regional cancer navigation network which would provide the opportunity for:
o training,
o education,
o information resource services such as literature review of patient navigation, benefits,
costs and outcomes,
o review of existing and development of navigation toolkits, i.e. evaluation,
o sharing of best practices, and uniform evaluation activities and outcomes.
Future Plans
How might your findings be shared?
Findings from this project could be shared with participants who then could share the information with
their organizations and their state coalitions. ETSU should publish the results from the project, even if
just on the website.
Recommendations
1) What challenges affected your ability to conduct this project?
As with any project, the funding and resources available were limiting factors. The short timeline
limited our ability to include more states because some individuals who work with cancer navigation
and wanted to participate had professional obligations and conflicts.
2) What facilitating factors helped you to conduct this project?
The project relied heavily on the in-kind contributions and generous support of project partners. The
project coordinating committee utilized its professional networks and connections to CPAC and the
13 Appalachian Community Cancer Network (ACCN). Wellmont Health Foundation provided meeting
space, food, administrative support and technical assistance. The foundation’s significant in-kind
contributions made it possible to convene key informants for two interactive meetings. The Virginia
CPAC’s support was critical in the success of this effort. Bon Secours Health System provides fiscal
administrative in-kind support for the Virginia CPAC and processed the considerable paperwork
involved with travel reimbursement for more than 40 individuals. The ACCN in Kentucky and Virginia
supported keynote speakers, who provided a unifying foundation for moving forward with a common
body of knowledge at the October 2010 meeting. Another major factor was the presence of relationships
established with ETSU and other partners during the project team’s earlier work benefiting regional
communities.
3) What do you think we should do with the outcomes of this project?
We have gathered much information about cancer navigation. However, in many ways we have just begun to
understand this topic, especially as it relates to the Appalachian region. We have convened an enthusiastic,
experienced, informed group of people who are invested in continuing work on this topic. The group would
benefit by continued support so they may evolve into a regional network.
4) How would you structure future opportunities to find the best answers to the questions we are
raising?
We would structure future project funding to be multiyear with a progressive pathway from exploratory
to implementation with at least an annual opportunity for an interactive, face-to-face meeting. In this
case, looking at cancer navigation in Appalachia, additional resources would provide an opportunity to
complete the collection of information from the entire Appalachian region and identify regional best
practices and intra-regional differences.
If the current structure is maintained and resources permit, we would suggest bringing project planning
groups together to interact and share ideas, organizing them to conduct projects, and then drawing them
back together at the projects’ conclusions to debrief and share experiences.
14 Cancer Patient Navigation in Appalachia – Tennessee (page 1) Prevalence and Coverage Geographic Region: 22 Counties Prevalence: (3) Health Systems and ACS in NE TN/SW VA w/ some form of navigation services serving Appalachia in: • Breast • Lung • Gastrointestinal malignancies. Availability: Newly confirmed patients with diagnosis at WHS facility regarding lung, breast, GI or a malignancy that would benefit from SRS/Cyberknife treatment will receive in‐depth navigation services. Utilize ACS using referral sheet Geographic coverage: • Wellmont ‐ If referred to their facilities – geography is a non‐factor • Laughlin‐has radiation oncology dept PN who works with all cancers. • JCMC‐breast navigator Continuum of Care
Types of Navigators: HVMC • Breast & GI Navigator, MSN,CBCN, OCN • Lung Navigator, RN BRMC • Breast Navigator, RN, OCN • Cyberknife Navigator, RN Greenville‐Radiation Dept, RTT, CMD JCMC‐breast navigator Area uses no Lay Navigators in the region o Provides education o Support services o Community outreach o Coordination o Survivorship Laughlin –Mumber Model Wellmont ‐ Freeman Model Navigator Roles also include: HMVC Attends weekly breast conference Attends weekly lung & GI conference BRMC Attends bi‐weekly breast conference Attends weekly tumor conference Fiscal Issues
Funding:
•
•
•
Free of charge ‐ services not reimbursable or recognized by payers (all payers) Evaluation Measure and Evaluate Services and Programs: Provide service to help relieve stress and confusion for patient and family –it’s part of doing business/serving our patients to the full extent. Organizations do not cover any of our cost of navigation. •
Patient feedback utilizing a Quality of life survey is sent out every 6 months. •
Prior to implementing navigation services the same survey was sent out and measured •
Since implementation of navigation services scores have increased and maintained. •
Goals were established based on national benchmarks monitored quarterly by cancer committee. Laughlin: •
ACS is going to give update on referrals •
started about 8 months ago •
No Press‐Ganey scores regarding patient satisfaction. Focus groups with survivors were conducted about 18 months ago for Wellmont. Survivors who had utilized a PN had higher pt satisfaction. ACOS national benchmarks are easier measured with a pt navigator. Connection to State Cancer Plans How is cancer navigation addressed in your state cancer plan? Not specifically mentioned but addressed under “treatment and care” and “survivorship” and disparities.
Recommend that TN state plan should specifically mention pt navigation. Cancer Patient Navigation in Appalachia – (page 2) Prevalence and Coverage Breadth of Coverage: • Any patient w/ confirmed diagnosis of lung, breast and GI cancers • Anyone that would benefit from cyberknife treatment. Cancers Addressed: • Lung • Breast • GI Parts of the Cancer Continuum Addressed by Navigators: • Diagnosis thru treatment entirety • A lifelong resource ‐‐‐if called upon. • Laughlin ‐ If getting radiation for any cancer, they are getting Patient Navigation, which begins at treatment. • JCMC‐ Breast Navigation service begin with diagnosis and/or treatment • ACS ‐ Pre‐post‐treatment support. There is no discrimination regarding: • Ins • physician • disease • etc Opportunity for improvement in the area of: • Pre‐diagnosis • Survivorship (in all areas) Rely on: • Support groups • Lay individuals Transportation‐ Great need among patients for transportation assistance: • Some help is breast‐specific (from Komen) • Some community support through o United Way‐assisted organizations o Churches o Etc. • Pts self‐identify transportation need in most instances. Continuum of Care
Fiscal Issues
Navigation Continuum: Entry to our navigators begins at Physician Referral either through work up or diagnosis confirmed‐‐‐then process starts. Reimbursement: Navigation services are not reimbursed at represented facilities. This is a source of frustration. Lay navigators: Evaluation Identify Measures of Success: Examples of Success: No one falls thru cracks: •
Timeliness of treatment •
Currently no lay navigators •
•
Treatment options (conference) Lay individuals are used to supplement navigation by clinical specialist for support, transportation, etc. •
Patient satisfaction surveys Our navigation program: Diagnosis at individual facility at Wellmont. Thinks that should start at radiology. •
Pts diagnosed elsewhere‐providers will call and ask for a navigator. •
There is almost a need for a gatekeeper to allow pt access to PN services. •
Need a “proven track record” to trust lay navigators to provide adequate and appropriate health information. COC data to make sure that the 13 nodes are checked. •
Diagnosis to surgeon for breast Lay navigators would be helpful in the role of ancillary service coordination and access, such as ACS programs. •
Surgery to oncology for breast •
Diagnosis to staging for lung Look at other areas’ navigator training programs to become familiar with lay navigation. Best practices site visit. •
Staging to treatment for lung How is this currently implemented? Our breast and lung cancer coordinators were active in the development of the first Tennessee Cancer Control Plan. Our health system continues to be active in the State Cancer Control Plan. Began in early 1990’sHas been Laughlin: involvement with listed as a best of practice. the regional coalition that utilizes the state plan Need for different types of assessment (for example, community impact), implement a comprehensive evaluation program. No experience with lay navigators Connection to State Cancer Plans **Navigator role: Navigator can influence the patients** Laughlin: direct patient referral forms (ACS will report), Need for GI Some departments have forms but they aren’t used. This is a process problem. Recommend should be done with pt education packet to ensure completion. There is no community‐based PN evaluation. PNs did not know one another in the differing facilities before this forum. Start with individual with a CA dx, have an upstream, interconnected plan that includes a PN (including lay navigator possibly located in the communities). Utilizing these may reduce the burden on patients (transportation to other facilities) Cancer Patient Navigation in Appalachia – (page 3) Prevalence and Coverage Navigating Across State Lines: Cancer center in Norton • Where we can refer our SWVA pts • There are no challenges or financial issues with this process. • At times pts request a different facility, but the main issue is knowing: o Which physicians are where o Their contact information Hand off internal – patient in Norton – HVMC External –why Call list of patient navigators operating in Appalachia by county state/organization Out‐of‐state patients in this area of TN come from • Western VA primarily • Some from KY. Laughlin and JCMC get more out‐of‐state pts from North Carolina. • Patient Care Providers (PCPs) need: o To know pt navigators exist so pts may access services earlier o Utilize a CE component for education o Wellmont – sees need for updated and improved guide to patient services (there is a guide at present). Needs more resources for PCPs to let them know what they need to know about cancer care. • Laughlin – is working on a guide. • There can be a hand‐off of patients to other facilities Continuum of Care
Issues of Special Concern: Wellmont has many healthcare providers some of which are employed and some that are not. With any new program there are barriers and MD buy‐in is critical to any program. There have been barriers from healthcare providers; however, with time and proven success and benefit to them and the patients those are overcome. A Regional Navigaion network would help provide educational opportunities to navigators as well as support and resources sharing. PCPs need to see the benefit to them. Laughlin was very supportive during the inception of a navigation program. A challenge is the number of specialities involved, making them feel included. Fiscal Issues
Differentiation of roles between paid and unpaid: • Wellmont Health System uses paid navigators currently. • Since navigators are not reimbursed, there is no issue as to reimbursement across state lines. Evaluation Connection to State Cancer Plans Challenges and Barriers Identified Through Evaluation: • Funding a position that is not revenue generating is a challenge. • Downstream revenue produced is a positive outcome of navigators. • Challenges of “turf” in MD practices. • Logistically trying to meet patients where they are in many different practices on their time schedule can be challenging for the navigators. Wellmont navigators go into the physicians’ offices. Laughlin sees pts @ its own facility. How is this documented? Who is responsible? Currently our documentation to the cancer plan is our cancer committee. There is no documentation of the navigators connection except for our Wellmont Team involvement in the cancer control plan on both a state and local level. Cancer Patient Navigation in Appalachia – Prevalence and Coverage Continuum of Care
Best Practices: Best Practices: Navigation program began: • Our navigation program began: • In the 1990’s o In the 1990’s o In Lung Cancer • In Lung Cancer o Before there were national • Before there were national models to pattern. models to pattern • We actually have been pioneers in We actually have been pioneers in navigation of patients navigation of patients and always and are always looking to improve our program. looking to improve our program. • We have shadowed navigators at larger We have shadowed navigators at larger institutions such institutions such as Vanderbilt as well as as Vanderbilt as well as attending the Advisory Board attending the Advisory Board sessions to sessions to look at best practices. look at best practices. There could be benefit in “shadowing” navigators in other facilities. Make a site‐visit rotation. Invite ACS to spend a day at each facility to learn more about programs & navigators. JCMC has an ACS office in their facility. Involve ACS in initial orientation of patient. Space is an issue. Fiscal Issues
Evaluation Best Practices: Best Practices: • To further grow our program we utilize: • We network with our o National benchmarks healthcare systems utilizing o The Advisory Board data patient navigators. • Our cancer committees continually • We have shadowed NCI evaluated measures on a quarterly basis designated cancer centers. to ensure the needs of our community are being met. • Currently no financial reimbursement for navigation programs but it is considered a value added service and downstream revenue producer. • Patient satisfaction and continuity of care are benefits. Connection to State Cancer Plans What best practices have been identified related to connecting cancer navigation to your state cancer plan? Examples: We would love to know this practice and how we can continue to support the cancer control plan beyond our very active participation in a local arena as well as state level. Other Issues: 1. Are there regular education and training opportunities for navigators in your state? How are they publicized? Our navigators are active in the local and national Oncology Nursing Society; however, it is often difficult beyond this avenue to find specific education and training for navigators. T hat would be a benefit of a regional network to provide for an avenue to acquire educational opportunities. No. There are no education and training opportunities (beyond mentioned above). This could be an additional benefit of regional networking. Laughlin: ASTRO 2. What opportunities are there for networking and communication with other navigators, families, patients, survivors, health providers etc? Is there a list serve, network, directory? Our navigators has a resourse list of referrals, other navigators, etc. Wellmont Health System also has support groups as well as wellness activities to promote navigation program as well as wellness in our community. An avenue to network with other navigators beyond Wellmont Health System would be a nice benefit. Need for a TN or Appalachian Oncology Navigation Association similar to the North Carolina group. An Appalachia‐region group might be more effective due to the geographic location as compared to other areas with larger metropolitan areas. 3. How would a regional cancer navigator network benefit you, your organization, clients etc? A regional cancer navigation network would benefit our navigators by providing a support and education system for a navigator role as well as an opportunity to network and share resources with other navigators. Community‐based measures Cancer Patient Navigation in Appalachia – Virginia (page 1) Prevalence and Coverage Continuum of Care
Types of Navigators, Responsibilities, and Location: Geographic coverage: The Mountain Laurel Cancer Center of Mountain Empire Mt Laurel Cancer Center navigator (Leigh Ann Bolinskey): Older Citizens, Inc.: • Provides patients traveling to another area for • Provides cancer navigation services to individuals medical appts with info traveling outside of our local area for treatment • Connect them with navigators at the facility • No other PNs in the area MEOC serves known they will use • Mountain Laurel Center (MLC) has a connection • Has not received any special navigation training with UVA PN. but does have AIRS (Alliance of Information and • MLC PN also assists those going to other facilities Referral Systems (www.airs.org) Certification outside the region and within the region. • Does not hold any special qualifications UVA Charlottesville covers: • Navigator is housed at the local Area Agency on • 13 counties Aging. • Two cities Mountain States Health Alliance has nurse practitioners • Lenowisco focused on: • Cumberland Plateau • Breast cancer • Mt Rogers • Continuum of care navigation • Psychosocial support ACS: • Symptom management • Navigator in Charlottesville covers remaining area. • Referrals to community resources • ACS office in Abingdon covers geography from Lee Co. to Wythe Co. UVA Charlottesville • ACS office in Roanoke • SWVA lay navigator – Kim Guenther focuses on: Mountain States Health Alliance covers: o All cancer types. • Primarily through Johnston Memorial: o Education o Washington Co. o Support o Russell Co. o Resource assistance • Smyth Counties Hospital o Financial • Secondarily in the following counties: o Connection to SW VA Cancer Resource o Grayson Support Center o Tazewell o Wythe • ACS PN – o Scott Faith Havran, LCSW o Buchanan o Dickenson Lenowisco Health District (Peggy Yanez, Community o Lee Health Worker/LPN) focuses on: o Wise • Prevention • Screening Community Health Worker for Lenowisco Health District • Follow up on abnormal results Health Wagon covers the Lenowisco area SW VA Cancer Center in Norton has lay volunteer for all Fiscal Issues
Evaluation Connection to State Cancer Plans Funding: • Mountain Laurel Center – funds provided by the Tobacco Commission through UVA’s Cancer Center and also local funds. • MEOC Care Coordinators – patient navigators in a sense are funded through Older Americans Act funds. • SW VA Cancer Center – Pat Adkins – volunteer. She does fundraising for the cost of some services • UVA Charlottesville – Kim – through state tobacco fund • ACS Charlottesville – Faith, ACS • Lenowisco Health District – Peggy – grant funded • Mountain States Health Alliance – Beverly Wright and Sarah Hammons – funded by the corporation Measure and Evaluate Services and Programs: SW VA Cancer Center • Does not evaluate their navigator program • Documentation on assistance provided to individual patients Mountain States Health Alliance: • Documentation tracking individual patients • Questions relevant to care coordination are a part of cancer center’s Press Ganey survey UVA Charlottesville: • Documentation tracking individual patients • No program evaluation measures • New question on the patient satisfaction survey regarding navigation Lenowisco Health District: • Tracks volumes and data on individual patients. • State conducts formal evaluation annually of Every Woman’s Life ACS: • Tracks quantity • Type of assistance offered to patients based on geographic origin Consensus – • Most programs are tracking overall volumes through counting individual patient records developed by One of the goals of the VA plan is that Virginians with cancer will be able to obtain integrated multidisciplinary evidence‐based cancer care. To achieve this goal, we are working to increase access to and utilization of patient navigation and support services. • UVA Program established with awareness of and intent to meet the state goal. Goal #2, Objective #2: • Strategies incorporated or encompassed • Pat Adkins a volunteer lay navigator at SW VA Cancer Center is a CPAC member and program activities are reported to CPAC. Brandi Hall, the new Financial Representative at SWVA CA Center attends MLC meetings where CPAC activities are discussed • Lenowisco Health District director Dr. Sue Cantrell is CPAC member Carillion Clinic has nurse navigator covering the Roanoke area Others: Rockingham Memorial Hospital, Harrisonburg Danville Regional Hospital cancers assisting with: • Transportation • Lodging • Access to other support resources • Cancer Care support • ACS support Categories: • Transportation/lodging • Financial • Screening/prevention • Education / Support groups • Community Resources • Treatment options • Survivorship • Symptom management • Counseling •
navigators Few are formally evaluating the effectiveness of the patient navigation program through measurement tools Cancer Patient Navigation in Appalachia – Virginia (page 2) Prevalence and Coverage Continuum of Care
Navigation Continuum: Breadth of Coverage: The Mountain Laurel Center gives anyone patient • Cancer patients or their family members typically navigation services regardless of the cancer type. contact the Mountain Laurel Center directly and the MLC Director can then begin work getting Wellmont SW VA Cancer Center volunteer serves: them connected and gathering information. Also • All adult cancer patients referrals from UVA Cancer Center are received and those patients are pulled into the MLC • Post‐diagnosis through treatment navigation support system. • Wellmont SW VA Cancer Center – Patient enters UVA Charlottesville (Kim) serves: the program when they come in for first visit • All adult diagnoses and with an oncologist • Begins services at the point of suspicious findings. • UVA Charlottesville – sees most patients during • 1/3 are underserved the diagnostic workup process •
Lenowisco Health Districts – sees asymptomatic ACS (Faith) sees all cancer types after diagnosis. patients before screening • Mountain States Health Alliance – Mountain States Health Alliance –the breast cancer nurse o Breast cancer nurse navigators identify navigators work with: patients during diagnostic workup • All breast cancer patients process. • Including pediatric o Depending on primary care physician • Identify patients pre‐diagnosis preference, nurse navigator may divulge • Work through diagnostic workup diagnosis. • Treatment planning o Following diagnosis, they work on setting • Treatment up multidisciplinary treatment plan & • Survivorship coordinating through treatment Lenowisco Health district works with adult patients with: • Breast • Cervical • Colorectal screenings • Follows up on all abnormal findings • Make sure patients receive follow‐up care. • Does follow‐up on patients identified through the Remote Area Medical program. Fiscal Issues
Evaluation Reimbursement: No third party reimbursement Some grant funding (UVA, Lenowisco Health District, Mt Laurel Cancer Center) • Some nurse navigator services are reimbursable. • Payers recognizing hospital “facilities fees” on the technical side offer limited reimbursement for education & other counseling. services associated with treatment • Nurse navigators that are nurse practitioners are eligible for reimbursement from most payers for any professional services provided such as Evaluation and Management. • Medicare & Medicaid typically recognize facility technical fees unless the program is administered by a third party payer such as United Health. Identify Measures of Success: • Patient volumes • Patient satisfaction • Time from test to diagnosis • Time from diagnosis to treatment • Screening rates • Stage at diagnosis • % of patients with abnormal findings who obtain either a definitive negative diagnosis or an initial visit with an oncologist Some measures on timeliness may be covered by the optional American College of Surgeons’ Breast Centers of Excellence that hospitals may choose to seek accreditation for. Connection to State Cancer Plans How is this currently implemented? See above Cancer Patient Navigation in Appalachia – Virginia (page 3) Prevalence and Coverage Continuum of Care
Fiscal Issues
Evaluation Connection to State Cancer Plans Navigating Across State Lines: • ACS – because TN/KY are in a different ACS division from VA staff do not cross the: o TN/VA state line o VA/KY state line • Mountain States Health Alliance – • Nurse navigator in Kingsport TN coordinates care for patients along Highway 23 from Norton, VA to Kingsport TN who need breast care services. • Specialist care is obtained in Kingsport. • Follow‐up care is coordinated back at Norton Community Hospital. • Wellmont SW VA Cancer Center – navigator will assist patients seeking treatment in Kingsport, TN and then coordinate care back to Norton VA. • Mt Laurel Cancer Center – works with patients that prefer to go to TN for treatment and will help arrange transportation. • UVA Charlottesville – sees very few patients from out of VA and only coordinates care within UVA network. • Lenowisco Health District – mammogram screening program includes Bristol Regional Medical Center in Bristol, TN Sometimes there are issues with insurance companies or government programs that may not cover institutions in other states Provider Acceptance: • UVA Charlottesville – feels there’s good integration. • Lenowisco – feels it works well • Mt Laurel Cancer Ctr – feels the integration works well • Wellmont Norton Cancer Center – feels there’s good integration with physicians • Mountain States Health Alliance – nurse navigators, which are more likely to run into physician resistance due to involvement in clinical care, but has picked nurses from oncology departments that are already accepted by the medical staff. Group feels that a regional contact network of navigators would ease burden of coordinating community resources outside of individual navigator’s community Differentiation between paid and unpaid: Discussed above. Challenges and Barriers Identified Through Evaluation: Group feels much of the necessary data is being collected, but in order to analyze and the measure against objectives, data would need to be pulled from disparate databases and organizations, which is not feasible. • Time from mammogram to diagnosis requires information from the breast imaging radiology system • Diagnosis requires information from the pathology system. • Those systems may or may not be located in the same corporation. How is this documented? Who is responsible? Addressed informally at annual meeting and by follow‐up work of CPAC coordinators and committee staff. Informal follow‐up but no hard data collected in a rigorous fashion. COMP‐
CANCER may be a mechanism for data collection in the future. Cancer Patient Navigation in Appalachia – Virginia Prevalence and Coverage Best Practices: • Partnerships develop between providers and community agencies. • Mountain States Health Alliance focuses on particular patient population (breast) in wide geographic area to provide more significant benefit for limited population. • Mt Laurel Cancer Center provides broader service to all patients & covers or refers to nearly all services required. Continuum of Care
Fiscal Issues
Evaluation Best Practices: Best Practices: Best Practices: • Some organizations have managed Tracking patient satisfaction • Partnerships develop between providers and community agencies. to obtain grants, but these are not broadly available. • Identifying patients during the diagnostic workup • Some organizations are providing process best manages anxiety assistance to patients: o Gas cards o Prescription assistance o Cost of living assistance o Transportation Connection to State Cancer Plans What best practices have been identified related to connecting cancer navigation to your state cancer plan? Examples: None identified. Directory being assembled of the state’s patient navigator resources. Other Issues: 1. Are there regular education and training opportunities for navigators in your state? How are they publicized? The American Cancer Society offers training for patient navigators. Nurse navigators are able to become certified as Breast Cancer Nurse Navigators (by Oncology Nursing Society or American College of Surgeons?) 2. What opportunities are there for networking and communication with other navigators, families, patients, survivors, health providers etc? Nothing formal yet, but this is under development. Some opportunity to network through CPAC. 3. How would a regional cancer navigator network benefit you, your organization, clients etc? Answered previously. Please note: Mountain States Health Alliance has cancer centers in Abingdon VA, Kingsport TN, and Johnson City TN. Only one representative from MSHA today, who sat in the Virginia group. The Virginia and Tennessee breast cancer nurse practitioner nurse navigator programs are structure identically, and responses here for Virginia can assumed to be the same for MSHA’s programs in TN. Cancer Patient Navigation in Appalachia – West Virginia (page 1) Prevalence and Coverage Prevalence: • Various navigation services offered throughout the state • Many programs and institutions offer PN‐type services, a multi‐functional position. Geographic Region: Formal PN services are offered through ACS: • Non‐clinical positions in Martinsburg and Wheeling, eastern and northern panhandles • 5 to 7 cancer resource centers staffed by volunteers (lay navigators). • ACS in other states also serves WVA women: BCCSP: All 55 counties of WV. Coverage: • Breast cancer navigation programs expanding throughout the state • Wheeling Hospital and St Francis Hospital have breast cancer navigators • Positions are funded through Avon • Other facilities may also but our team is not certain Bonnie Bus mobile mammography unit also is offering navigation services from the time of a suspicious finding through treatment. Continuum of Care
Types of Navigators: • Paid Navigators • Lay Navigators Navigator Roles: ACS ‐ navigators are • Resource‐based • Designed to complement existing cancer care management/clinical services at partner hospitals. MBRCC ‐ mobile mammography program – PN services through Cancer Prevention and Control Department. BCCSP ‐ PN services through their community cancer information specialist workers. Catastrophic Illness Commission ‐ services through their MSW director. MRBCC ‐ PN services through nursing staff in the cancer center. Responsibilities: BCCSP (good example of PN responsibilities) which include: •
Enrollment into WV Medicaid •
Assessment and reassessment •
Coordination planning with a formal care plan •
Implementation •
Monitoring and review of clinical records •
Education treatment options •
Evaluation of options and services required to meet the P health care needs •
Community resources and emotional support •
Psycho social interventions •
Identification and facilitation of service delivery and appropriate providers •
Advocacy Fiscal Issues
Reimbursement: No reimbursement for direct PN services through: • Medicaid • Medicare • Private insurance companies Services paid through funding from private foundations – Avon, Komen. ACS is 50 % from the two hospitals and ACS. PN services embedded in many positions throughout the state with varied pay sources. Evaluation BCCSP measures: • Time from: o Screening to diagnosis o Diagnosis to treatment o Treatment to disenrollment • Patient satisfaction surveys. Measurements are related to CDC guidelines. ACS: • # of constituents served • # of services • # referrals provided, • follow‐up measurement within a specific time frame • evaluation of the value of follow up • paper survey to client Connection to State Cancer Plans State Cancer Plan: • Quality of Life section in the Cancer Plan PN is mentioned • Objective 16.2: Develop, test, and promote at least one formal patient navigation system by January 1, 2009. This goal has been met. Qualifications: Housing : ACS: Navigators are in ‐ • Martinsburg and Wheeling hospitals • ACS in other states also serves WVA Women : o Winchester, VA o Hagerstown, MD o Cumberland, MD o UVA also serves some WV women. BCCSP: RN case managers – • 2 in Charleston • 1 in Beckley • 1 in Elkins Cancer Patient Navigation in Appalachia – (page 2) Prevalence and Coverage BCCSP Breadth of Coverage: Coverage is all 55 counties for BCCSP: • Uninsured and underinsured women only • Only women with breast or cervical cancer. Main focus: • Prevention • Early detection • Quality of life through treatment ACS Breadth of Coverage: • Addresses all cancer sites • Helps anyone who asks for help • Focus or the under or uninsured Main focus: • Point of diagnosis • Through treatment • Through survivorship • EOL Other programs: Somewhere within this continuum. Continuum of Care
Fiscal Issues
Navigation Continuum: BCCSP most common through screening providers in all 55 counties: • Referred to screening providers • Then to diagnostic testing and procedures if appropriate, • Then referred to Medicaid treatment act. o Patients can enter during any of these phases. ACS: • Patients can enter at any point in the continuum • Most referred from oncology teams at each hospital. BB: • Patients enter at time of suspicious finding • From a scheduled screening in the mobile mammography unit. Reimbursement: • ACS ‐ does not charge for services • BB ‐ does not charge for navigation services, • BCCSP ‐ reimbursed through Medicaid but not specifically for PN services. This is a work in process. Health care reform?????? Cancer Coalition has started a foundation fund to support the WV Patient Navigation Network, current balance is $1100. Exhibitors at PN Annual Meeting provide some funding also. Evaluation Identify Measures of Success: Suggested – • # of patients served • Patient satisfaction • # of missed clinical appointments ACS provided service goals ? Connection to State Cancer Plans How is this currently implemented? The state Cancer Coalition is developing a PN network: • Statewide survey was conducted and a PN network is formed. It falls under the umbrella of the Mountains of Hope Cancer Coalition. • First statewide meeting was held in 2009 with the second being offered in November 2010 • Network is open to all organizations and individuals providing or having interest in PN type services. • No specific definition of PN is provided. Cancer Patient Navigation in Appalachia – (page 3) Prevalence and Coverage Navigating Across State Lines: BCCSP: • Patient services covered across state lines • Limited to prior special agreements with WV Medicaid and border states • Some prioritization is required. ACS: • Navigation is managed centrally to ensure standardization. • 2 call centers are within the division. • All staff have access to a national database. Continuum of Care
Issues of Special Concern: Appears to be conflict between hospital social workers and proposed PN programs: • Social workers feel they provide PN services • Many physicians and hospital administrators question the value of PN services A regional network can provide: • Training • National policy info. • Health care reform info. But assume that cost and time of attending a regional meeting is a major issue. Fiscal Issues
Differentiation of roles between paid & unpaid: Paid navigators: • More accountability • Dedication to the position is not necessarily related to pay but the attributes of the individual navigator. Lay navigators: • Gain sense of personal satisfaction • Possible job connections. Evaluation Challenges and Barriers Identified through Evaluation: N/A? Connection to State Cancer Plans Responsibilities: The quality of life committee of the cancer coalition oversees all activity related to patient navigation. Documentation: Activity is documented through quarterly reports. Cancer Patient Navigation in Appalachia – Prevalence and Coverage Best Practices: ACS: select hospitals that meet certain criteria – • ACOS approved • Typically serve 1000 patients annually • Serve at risk community (rural in WV) • ACS & hospital must secure funding for at least 3 years • Hospital must have high level support • Prior evidence of significant ACS activity in the area. Continuum of Care
Best Practices: ACS: • Non‐clinical approach to complement the clinical approach hospitals already provide their patients. • As close to diagnosis as possible: o Allows identifying needs in a timely manner o Leads to higher success rate of breaking down the barriers patients have Fiscal Issues
Evaluation Best Practices: Best Practices: Private donors and foundations that have a passion ACS has provided evaluation reports of supporting tangible services….you can see a navigator and feedback can be immediate Testimonials and patient stories. 50/50 split of funding positions. Connection to State Cancer Plans Best Practices: • Developing a quality of life committee due to PN efforts. • Having the cancer coalition serves home for the state’s PN network Other Issues: 1. Are there regular education and training opportunities for navigators in your state? How are they publicized? A yearly meeting is planned to share best practices, conduct education, etc. Info. Goes out on several list serves, and mailing lists as well as cancer coalition members. 2. What opportunities are there for networking and communication with other navigators, families, patients, survivors, health providers etc? Is there a list serve, network, directory? Yes a list serve was developed, regular quarterly phone meeting to share information is held, steering committee was developed. 3. How would a regional cancer navigator network benefit you, your organization, clients etc? Information about the impact of health care reform on PN, other training and networking opportunities. Cancer Patient Navigation in Appalachia – Kentucky: AMERICAN CANCER SOCIETY (ACS)
(page 1) Prevalence and Coverage Geographic Region: Counties: All Appalachian Counties in KY Continuum of Care Fiscal Issues
Types of Navigators: ACS navigators focus on: • Treatment, • Survivorship, • General supportive care Navigator Responsibilities: • Meet with patients • Assess need • Connect patients to proper support Qualifications: Volunteer navigators must: • Be from the community, • Have a passion for helping others • Not be paid. ACS will hire a paid navigator. This paid position will become part of the Markey Social Worker Team. Paid navigators must: • Hold a bachelor’s degree • Have experience working with cancer patients. Housing: Hazard Regional, UK. The paid navigator will be housed at UK. Navigating services are offered everywhere through a national number 1‐
800‐227‐2345 Funding: We utilize a hybrid model. The national ACS phone number provides some navigation and is supported by nationally raised funds. The navigator at UK is paid for by a grant obtained from AstraZeneca by ACS. ACS will partner with UK for in‐kind contributions and plan to partner with them for years 3‐5 for continued funding. Cancer Resource Center in Hazard (CRC): Grant was obtained from the National Home Office of ACS paid for: • Additional supplies needed • Set‐up of a physical CRC at Hazard Regional CRC – staffed with community volunteers who are: • Cross‐trained by the hospital and ACS • Volunteers of both organizations • Doubly trained on HIPPA and confidentiality issues Hospital – gave in‐kind contributions: • Space • Desks needed • A computer • A phone line • Co‐branding for signage. Evaluation Measure and Evaluate Services and Programs: ACS measures all the following and reports findings at the Cancer Committee meetings: • Patient satisfaction survey • Provider Satisfaction survey • Number of patients • Number of service utilized Connection to State Cancer Plans
How is cancer navigation addressed in your state cancer plan? Cancer Patient Navigation in Appalachia – Kentucky: AMERICAN CANCER SOCIETY (ACS)
(page 2) Prevalence and Coverage Breadth of Coverage: All cancer patients and care‐
givers Cancers Addressed: All Cancers Parts of the Cancer Continuum Addressed by Navigators: All Continuum of Care Fiscal Issues
Navigation Continuum: Navigating services are offered to patients, families, and caregivers: • Everywhere via the national number 1‐800‐
227‐2345. • With a person on‐site at their treatment facility. • Through their local ACS office nearest to their community. Reimbursement: Services are paid for by grants obtained. Impact of healthcare reform on reimbursement: Unsure Evaluation Identify Measures of Success: ACS strategically plans and works to place navigators at facilities that reach a high number of underserved patients. ACS also monitors an ‘un‐met needs’ report and continually works to plug the gaps. ACS measures success by • Numbers of patients reached • Types of assistance patients obtain • Patient satisfaction. Connection to State Cancer Plans
How is this currently implemented? Cancer Patient Navigation in Appalachia – Kentucky: AMERICAN CANCER SOCIETY (ACS)
(page 3) Prevalence and Coverage The Kentucky branch of ACS coordinates with other divisions of ACS at times. Not all ACS divisions offer the same services. Financial Issues: ACS can offer various resources to patients (varies by location): • Grants given to treatment facilities in specific areas for transportation • Financial assistance via gas cards • A Road 2 Recovery program to assist with transportation • Free Lodging at Hope Lodge for treatment in the Lexington Area (including transportation to treatment) Confidentiality Issues: ACS has strict policies on confidentiality & all volunteers who support navigators are cross‐trained on ACS & facility policies. Referrals: Depending on the issue: • Handled centrally for information • Locally if the needs are more specific in nature. ACS can make referrals to: • Organizations in the community and nationally (pharmaceutical companies) that may be able to off‐set some of the financial burden • Counseling companies and other organizations (i.e. National Patient Advocacy Foundation) Continuum of Care
Fiscal Issues
Issues of Special Concern: Differentiation of roles between paid and unpaid: • Health professionals mostly accepting and Paid navigators will have: appreciative of the work of our navigators • Additional goals • Unsure how a regional navigator would work to support their efforts • Additional objectives • Attempt to provide cross‐county assistance • Regular performance reviews. Rewards for lay navigators (volunteers): • Thanked repeatedly • Supported by communication and feedback on their work •
Honored with an annual appreciation event showcasing their work with local media. Evaluation Connection to State Cancer Plans
Challenges and Barriers identified How is this documented? Who is through Evaluation: responsible? AMERICAN CANCER SOCIETY CAN: • 501c4 organization • formed because more financial need than can be addressed (even with other community organizations and partners) • Could be more active in legislative reform changes that made the lives of cancer patients easier. AMERICAN CANCER SOCIETY very active in lobbying for: • Abolishing of pre‐existing conditions • Extending coverage to older children. • Coverage of preventative cancer screenings. Cost remains a concern for everyone and AMERICAN CANCER SOCIETY CAN will continue to monitor and champion needed changes in Health Care Reform as it unfolds. Cancer Patient Navigation in Appalachia – Kentucky: AMERICAN CANCER SOCIETY (ACS)
(page 4) Prevalence and Coverage Continuum of Care Best Practices: Best Practices: Recruiting and training additional volunteers who can We utilize volunteers to enhance leverage and meet one‐on‐one with patients in their facility. manpower resources. Volunteers help us: • Identify new resources in local communities which feed our Cancer Resource Connection database. • Work shifts at Hazard Regional Medical Center in the Cancer Resource Center a partnership between ACS and Hazard Regional. • Meet with patients and learn about their needs • Determine how to best support patients • Assist by referring to information and local resources • Hand out available gift items such as free: Bras, Hats, Pillows, Prosthetics, Turbans, Wigs • Help with support groups, etc. Fiscal Issues
Best Practices: It really is a combination of techniques. All seem to work but ideally, I think you would have a paid navigator supported by additional staff. Evaluation Connection to State Cancer Plans
Best Practices: We have a lot of standardized reports that give us a lot of information on the people using the services. In addition we learn a lot from the specific comments and feedback from patients helped Other Issues: 1. Are there regular education and training opportunities for navigators in your state? How are they publicized? 2. What opportunities are there for networking and communication with other navigators, families, patients, survivors, health providers etc? Is there a list serve, network, directory? 3. How would a regional cancer navigator network benefit you, your organization, clients etc? Cancer Patient Navigation in Appalachia – Kentucky: Kentucky Homeplace
(page 1) Prevalence and Coverage Geographic Region: Of the 49 KY Appalachian Counties: • Served 36 counties in 2009‐2010 • Currently serves 30 counties in 2010‐2011 Area Development Districts (ADD) served: • 2009‐2010, 7 ADD • 2010‐2011, 6 ADD Continuum of Care Types of Navigators: • Family health care advisors cross the continuum • Handle a multitude of client & family needs. Through a partnership with ARH, PNs: • Receives referrals from Homeplace to help provide services • Tracks patients from screening • Diagnosis & treatment. Responsibilities: FHCAs – • Visit homes • Assess client and family needs. • Able to better ascertain a client’s needs than the client. • Clients will self‐refer themselves with a particular need, but once the assessment is completed, other needs are obvious. FHCAs help clients: • Access medications • Find a medical home FCHA’s also assist in getting: •
Better housing for clients •
Clothing •
Eyeglasses •
Food •
Hearing aids •
Heating assistance •
Housing repairs •
Medical supplies •
Prevention exams Qualifications: FHCAs are chosen from the county/counties they serve their job standards call for: •
A GED or high school education •
A minimum of one year work experience. •
Basic computer skills •
Some knowledge of local resources. Fiscal Issues
Funding: Kentucky Homeplace funded through: •
•
The Commonwealth of KY Legislature The KY Cabinet for Health and Family Services (Department of Public Health) to the UK Grant funding from the Ralph Lauren Foundation and Pfizer fund the ARH navigator. Evaluation Measure and Evaluate Services and Programs: • Audit client’s satisfaction via mail and telephone surveys • Number of patients served – FHCAs have a minimum # of clients and services required per quarter • Number of services utilized, etc. – most of our services have a dollar value attached to them, along with cost of medications Connection to State Cancer Plans
How is cancer navigation addressed in your state cancer plan? FHCAs must complete an intensive week of training dealing with: •
Database training •
HIPAA •
IRB •
Learning approved educational material for chronic diseases & cancer prevention. •
Safety training for home visits •
UK & KY Homeplace policies and procedures Then they are put in the ‘field’ with other FHCAs to learn hands‐on training for several weeks/months depending on need. Housing: Available housing varies: •
Clinics •
Community Action buildings •
Courthouses, •
Doctor’s offices, •
Health department, •
Hospitals •
Library •
Private rented spaces. Cancer Patient Navigation in Appalachia – Kentucky: Kentucky Homeplace Prevalence and Coverage Breadth of Coverage: All community members Cancers Addressed: All cancers, with emphasis on: • Breast • Cervical • Colon • Prevention and detection Parts of the Cancer Continuum Addressed by Navigators: KENTUCKY HOMEPLACE offers: • Education • Prevention (detection) • Access • Diagnostic • Treatment and survivorship services • Educational materials • Access exams including: o Doctors’ visits o Access specialty services and treatment center o Assist with medications and medical supplies o Routine services throughout our program Continuum of Care Navigation Continuum: FHCAs referrals come from all areas – the hospital may request assistance; the FHCA may have accessed exams and cancer discovered; Patients are referred from: • Clinics • Community agencies • Doctors • Health departments Fiscal Issues
Reimbursement: Our organization’s services are offered free of charge to all clients. Their health care charges are handled in a variety of ways. Impact of healthcare reform on reimbursement: • I feel that there will be less money for PN services with the increase of patients who will have access to care. • There aren’t enough trained providers to take care of the increased patient load if almost everyone has access to care. • We see need for more basic services & can prove that navigation reduces overall cost, but emphasis will be given to training additional physicians, nurses & healthcare providers. Evaluation Connection to State Cancer Plans
How is this currently implemented? Identify Measures of Success: • Success measured 1 client at a time; 1 situation resolved. • FHCAs – o meet minimum standards of # of clients & services per quarter. o Use their peers to search out resources & services for individual need. o Consistent standards of training keep employees current with guidelines. • It is difficult to set the same goals for every employee because every county is unique – o Some have few doctors & no hospital o Others have regional medical centers & cancer centers • Homeplace has been recognized & honored for services in the state & nation. o Consistent standards of care in the organization have been key to success. Homeplace and Fran Feltner awards and honors: • 2009 ‐ Certificate of Appreciation, National Cancer Institute, recognition of dedicated effort to improve lives of those affected by cancer • 2008 ‐ Program awarded the National Rural Health •
•
•
Association Outstanding Rural Health Program Award, recognition of great accomplishment in coordinating health services & providing essential care to rural underserved population 2007 ‐ Program who “because of Feltner’s and the program’s advocacy efforts, Kentucky Homeplace was one of three programs nationally – and the only rural‐based one – to be featured in C‐Change’s 2007 video, Cancer Patient Navigation: Care for Your Community?” 2007 ‐ Program received Health Kentucky organization’s annual Advocacy Award. Kentucky Homeplace staff members were recognized for “efforts toward personal health improvement.” 2005 ‐ Foundation for a Healthy Kentucky selected Kentucky Homeplace as one of 13 “Models That Work” – health and wellness projects across the state that are succeeding in making their communities healthier. Kentucky Homeplace was highlighted during a 13‐part Kentucky Educational Television series, titled “Be Well Kentucky”. Cancer Patient Navigation in Appalachia – Kentucky: Kentucky Homeplace
(page 3) Prevalence and Coverage Continuum of Care
Issues of Special Concern: Many health care providers refer their patients to us for assistance in accessing medication and medical supplies. FHCAs: Financial Issues: • work daily in their communities Homeplace doesn’t offer the clients financial • often more aware of resources than assistance, but work as advocates to speak for the providers clients to access needs at a reduced rate or at no cost. Homeplace works with all agencies to best meet the Confidentiality Issues: Homeplace is a research needs of their clients. A regional network that program, operating under IRB and HIPAA guidelines. could actually help with getting clients into free or All employees must take these mandatory training. reduced care situations or assist with travel money, medical supplies, etc. would be wonderful. The computers used by the FHCAs are protected by: • Windows Firewall Many of the rural counties: • McAfee antivirus • Do not have cancer care facilities • Microsoft ForeFront anti‐malware. • Patients must travel in order to access treatment The central database server uses all of these technologies, in addition to being behind the University of Kentucky firewall. Referrals: Referrals come to Homeplace through: • churches • clinics • family • friends • health departments • hospitals • physicians • self‐referrals • social services Homeplace operates on the holistic concept; it addresses various issues: • Cancer‐related • Medical • Social • Mental • Environmental Navigating Across State Lines: N/A. Kentucky Homeplace is contained within the state per funding guidelines. Fiscal Issues
Evaluation Connection to State Cancer Plans
Differentiation of roles between paid Challenges and Barriers identified How is this documented? Who is and unpaid: N/A with our organization. through Evaluation: responsible? Challenges and barriers: Rewards for lay navigators: • Lack of access for preventative Our FHCAs are paid workers who are not and diagnostic care eligible for bonuses; our clients receive • Under/uninsured population our services at no charge. • lack of transportation • Funds for traveling for treatment • Having to leave family for treatment in other cities. Strategies: •
•
•
Having a regional coordinator personally introduce the FHCA to the providers, clinics and hospitals Having FHCAs attend community agency meetings to keep up with new resources for their clients Networking with all agencies to access care for reduced or no charge. Referrals are delegated to counties where patients: • Primarily reside • Receive treatment. One navigator handles their case throughout the process. Cancer Patient Navigation in Appalachia – Kentucky: Kentucky Homeplace
Prevalence and Coverage Continuum of Care Best Practices: Using community health workers Best Practices: (FHCAs) who are hired from within their service areas, There is a health care navigator in Perry County at who know the available resources and who network the ARH/UK Cancer Center who: with local providers and social service agencies. • Works under the director of Homeplace director, Fran Feltner. • Takes patients of the medical center from the initial date of exam • Follows them throughout their diagnosis, treatment and outcome. • Assists with financial problems and access of care. • Reduced time of exam to treatment date • The cancer & medical centers have featured her work in their PR campaigns. Fiscal Issues
Evaluation Best Practices: What works best is for the client to have good health care insurance, care available close by, and medical and emotional support. That’s in an ideal world – maybe where cancer doesn’t even exist. What we see is the ‘neediest of the needy,’ struggling to access care, in a world where money drives the system and people continue to die without treatment. Best Practices: Navigation that begins with a one‐on‐one relationship from accessing exams through end of care. This is the only sure way that you can measure success. Otherwise, length of time between diagnosis and treatment can be increased; falling between the cracks when clients can’t afford the next phase of care or are too scared to continue on their own. To effectively evaluate navigation, all criteria must be comparable; this isn’t possible in most rural areas. Connection to State Cancer Plans
What best practices have been identified related to connecting cancer navigation to your state cancer plan? Examples: Other Issues: 1. Are there regular education and training opportunities for navigators in your state? How are they publicized? 2. What opportunities are there for networking and communication with other navigators, families, patients, survivors, health providers etc? Is there a list serve, network, directory? 3. How would a regional cancer navigator network benefit you, your organization, clients etc? Cancer Patient Navigation in Appalachia – Kentucky: Kentucky Pink Connection + 2 Independent Health System Hospitals (page 1) Prevalence and Coverage Geographic Region: Provides statewide navigating services: •
•
Susan G. Komen Lexington Affiliate grant covers 58 counties in Central and Eastern Kentucky. Breast Cancer Trust Fund Grant provides navigation services to the remaining 62 counties. King’s Daughters Medical Center – Ashland KY Geographic Region • Services cover any patient receiving radiology treatment & cancer treatment at KDMC • Counties covered: Boyd, Greenup, Carter, Rowan, Johnson, Lawrence, Floyd, Lewis Continuum of Care Fiscal Issues
Funding: Program is funded by :
Types of Navigators: Our program covers multiple patient issues along the continuum – from outreach to survivorship. Responsibilities: • Listening to the client • Completing an initial intake • Analyzing needs/barriers • Working to find and provide solutions Qualifications: • Certification thru the Harold P. Freeman Patient Navigation Institute • Compassion • Be attuned to the people of the community • Able to communicate • Be sensitive. Housing: Lexington, KY King’s Daughters Medical Center Types of Navigators: • Multiple areas • Education for appropriate cancer screening • Diagnostic workup • Treatment phase • Survivorship Navigation Consults from: • Pathology & radiology reports • Physician referral • Direct referral from oncology unit • Direct referral from breast cancer arena Housed: Main campus of KDMC King’s Daughters Medical Center Funding: • Hospital budget • Part of oncology service line
•
•
Grant from Susan G. Komen –
Lexington affiliate KY Breast Cancer Research and Trust Fund. Evaluation Connection to State Cancer Plans
Measure and Evaluate Services and Programs: • Patient satisfaction survey – sent out 2 times per grant year • # of patients served – noted in grant reports • # of services utilized, etc. – noted in grant reports How is cancer navigation addressed in your state cancer plan? Applies to ALL Cancer Programs in Kentucky, not just the ones on this Grid Kentucky’s Cancer Action Plan: Screening & Early Detection Section Goal 7: Reduce incidence and mortality from colon cancer through prevention and early detection Objective 7.1: Increase colon cancer screening among adults ages 50 & older to 75% by 2012 Objective 7.2: Increase percentage of Kentuckians diagnosed at an early stage of colon cancer to 60% by 2012 Strategies client‐oriented Develop lay health navigator services to increase awareness and follow‐through with colon cancer screening Strategies provider‐oriented Promote utilization of patient navigators to increase follow‐through of referrals for colon cancer screening Treatment & Care Section Goal 9: Promote access to and appropriate utilization of quality cancer diagnostic and treatment services for all Kentuckians Objective 9.1: By 2012 establish baseline regarding the number of patients who receive care according to the American College of Surgeons King’s Daughters Medical Center Evaluation: • Number of patients served Bon Secours Kentucky Health System Our Lady of Bellefonte Hospital Ashland , KY Geographic Region • Boyd, Carter, Elliott, Greenup, Lawrence and Lewis Counties in Kentucky • Socioto & Lawrence Counties in Ohio • Wayne County in West Virginia Bon Secours Kentucky Health System Our Lady of Bellefonte Hospital Ashland, KY Types of Navigators: • Breast navigator • Follows clients from abnormal exam/study through survivorship Housed: Women’s Center Provide: • Mammography • US • DEXA • Library • Boutique – post mastectomy products Bon Secours Kentucky Health System Our Lady of Bellefonte Hospital Ashland, KY Funding: • Hospital Budget • Oncology Department for Navigator’s salary • Other sources for patient care/testing Bon Secours Kentucky Health System Our Lady of Bellefonte Hospital Ashland, KY Evaluation: • NCBC Survey for breast care • Hospital satisfaction survey Commission on Cancer standards Strategies provider‐oriented: Expand network of patient navigators, including volunteers and trained social workers Quality of Life Section Goal 12: Promote overall health of Kentucky Cancer survivors from diagnosis onward, to increase quality of life. Category: Patient navigation Objective 12.6: By 2013 establish baseline number of Kentucky facilities that have a patient navigation strategy (person or system) that addresses cancer –related issues across the cancer continuum Strategies • Develop working definition of “cancer patient navigation” for use by Kentucky Cancer Consortium • Via e‐mail, web‐based/or phone survey, query KCC member organizations as to what they currently collect regarding the existence and utilization of cancer patient navigation services in their facilities/organizations • Collaborate with comprehensive cancer control planners in neighboring Appalachian states regarding best practices in cancer patient navigation Cancer Patient Navigation in Appalachia – Kentucky: Kentucky Pink Connection
Prevalence and Coverage Continuum of Care Breadth of Coverage: We provide for women: • Over 40 • Who are rarely or never screened • Who are uninsured/underinsured or have high deductibles with assistance in getting a mammogram. • Navigation services to those diagnosed with breast cancer. Cancers Addressed: Breast Cancer Parts of the Cancer Continuum Addressed by Navigators: All Navigation Continuum: Entry points for patients, families, and caregivers: • Local free clinics • Health departments • Community healthcare providers • Churches Lay navigators are a crucial part of outreach in each community. King’s Daughters Medical Center Ashland, KY Breadth of Coverage: • All patients diagnosed with digestive tract cancer • Esophageal, gastric, pancreatic, liver and colorectal • Focus on over 50 age group • Encouraging colon cancer screening Bon Secours Kentucky Health System Our Lady of Bellefonte Hospital Ashland, KY Breadth of Coverage: • Services cover anyone with breast cancer (including males) • Services related to breast pain, genetic testing, biopsy care, SBE instruction, CBE for patients without PCP or had CBE by PCP Fiscal Issues
Reimbursement: Grants. Impact of healthcare reform on reimbursement: N/A Evaluation Identify Measures of Success: KPC was launched in 2008. Since that time we have provided over 1000 women with products and services in: Connection to State Cancer Plans
How is this currently implemented? • Screening • Financial • Mastectomy Goals: • Promote screenings and treatment with no delay • Aims to ensure seamless, coordinated care and services. We provide assistance to patients to negotiate the health care delivery system. Cancer Patient Navigation in Appalachia – Kentucky: Kentucky Pink Connection
(page 3) Prevalence and Coverage Navigating Across State Lines: • Possible difference in state Medicaid programs. • Screening and BCCTP programs may vary. • Private insurance company issues. • Locating community resources. Continuum of Care
Issues of Special Concern: Once the navigating program is understood healthcare providers are willing to partner because they realize we are able to meet needs they may not be able to provide. Financial Issues: • Negotiate treatment rates with each provider. • Require HCFA forms with CPT coding and pathology reports. • Case by Case review of financial needs. Confidentiality Issues: • Program operates within HIPPA regulations. • Patients must sign medical release form. Referrals: Referrals are received from social service agencies or healthcare providers via fax with the client signature or by phone with client name and phone number so that we may follow thru on intake information required to assist. We receive many self‐ referrals through our website and toll free number. Fiscal Issues
Differentiation of roles between paid and unpaid: There is no differentiation between roles. Rewards for lay navigators: There are no rewards for lay navigators. Evaluation Connection to State Cancer Plans
Challenges and Barriers identified How is this documented? Who is through Evaluation: Barriers range responsible? from education related to healthcare, lack of healthcare insurance, fear, transportation, language, and financial. These barriers may cause patients to delay care or miss appointments. It is vital that patients receive care from screening through diagnosis and treatment to ensure quality of care. Cancer Patient Navigation in Appalachia – Kentucky: Kentucky Pink Connection
Prevalence and Coverage Best Practices: Being patient enough to listen to a client’s need and then working to meet the need no matter what. As it relates to coverage statewide‐ best practices involve community outreach to healthcare providers, local health department and the community at large. Continuum of Care Fiscal Issues
Best Practices: Being patient enough to listen to a Best Practices: Our program is funded client’s need and then working to meet the need no by grants. matter what. As it relates to coverage statewide‐ best practices involve community outreach to healthcare providers, local health department and the community at large. System monitoring‐ patients are entered into our data base‐ immediate needs identified‐patients are tracked –missed appt are followed up until all barriers have a resolution. Evaluation Best Practices: The most powerful tool in patient navigation is building a strong relationship. This bond will be most helpful when interacting with a patient or healthcare provider. Connection to State Cancer Plans
What best practices have been identified related to connecting cancer navigation to your state cancer plan? Examples: Other Issues: 1. Are there regular education and training opportunities for navigators in your state? How are they publicized? 2. What opportunities are there for networking and communication with other navigators, families, patients, survivors, health providers etc? Is there a list serve, network, directory? 3. How would a regional cancer navigator network benefit you, your organization, clients etc? Cancer Patient Navigation in Appalachia – North Carolina (page 1) Prevalence and Coverage Geographic Region: Appalachian Region : • 52 Navigators Total • 28 BCCP Screening Navigators • 20 Nurse Navigators • 17 Treatment focused • 3 Diagnostic focused • 8 in rural areas (non‐metro) • Specific Focus Total (52) – Breakdown • 3 Screening focused Navigators o Community health workers w. breast, cervical & colorectal focus • 32 Diagnosis focused Navigators o 29 BCCCP nurse coordinators & 2 nurses in screening settings (31 breast & 1 colorectal) • 17 Treatment focused Navigators o 3 general/all cancers o 12 breast o 2 colorectal o 4 Thoracic/Lung(added later) Continuum of Care Types of Navigators: CHWs – Community Health Workers ACS Bridges Training Program • Screening outreach • Lay health advisors that are trained • METRO only Housed in free‐standing nonprofit BCCCP RN – Health Departments MSW – • Resource navigation • Psychosocial assessments • Appalachian Pride Housed in hospitals – • cancer unit • radiation/oncology floats to chemo RN – • Treatment navigation • Breast‐ radiology and cancer center • Colon‐outpatient cancer center • Lung‐ outpatient cancer center Navigators do not always identify themselves correctly on the continuum Case managers are in‐house only – care ends when patients leave hospital 2 Types of ACSA lay navigators & training Bridges=screening navigator & Resource Center Navigation (treatment & Survivorship) Fiscal Issues Evaluation Funding: • Hospital funded – value added / quality improvement – 85% • Initially grant funded and now funded through hospital and endowment • Duke Endowment funding 4 navigators through grants in Appalachian • Grant funded – 29% • Hospital Foundation – 21% • Other – 21% • Over % = Duel funded • UNC Lineberger = Legislative funded $90 million per year (University cancer research fund) • 2 Lung Navigators in Mission Hospital • Community Health Workers – screening navigators are volunteers – Program is grant funded • Diagnostic Navigators in outpatient radiology & endoscopy – funded through hospitals • Diagnostic navigators with NC BCCCCP are funded by state and CDC funds • ACS/hospital partnership funds one navigator How have navigation services for cancer been measured and evaluated? Patient Satisfaction survey Tracking time between services Numbers & demographics of Patients served Nurse Nav Software Volume increase in screening & treatment Volume & type of referrals Retention of Patients Patient survey of needs Computerized charting system See Barriers ID’d note Connection to State Cancer Plans How is cancer navigation addressed in your state cancer plan? Specific goals & objectives in plan Access to Services Section: Goal 2 – Ensure access to appropriate, effective & high‐
quality cancer services & care to all North Carolinians prior to and after being diagnosed with cancer. Appropriate care includes comprehensive, culturally competent language appropriate treatment, management of pain and support services that address quality of life issues related to living with cancer Objective 4: All cancer treatment centers will implement and sustain a cancer patient navigation program Objective 5: All newly diagnosed cancer patients will have access to cancer patient navigation services if appropriate and requested Also formed NC Oncology Navigators Association Cancer Patient Navigation in Appalachia – North Carolina (page 2) Prevalence and Coverage Breadth of Coverage: TREATMENT: • 11 Breast Navigators • All Appalachian Counties covered for Breast Navigation • Lack of knowledge of all cases (some patients go to facilities without navigators) • 9 facilities provide breast care without navigators • Colon: 3 navigators (dedicated RN) • 9 counties are not covered with colon navigation services • Lung: 3 navigators (dedicated RN) • Prostate: 1 • General RN/MSW • 2 general social work navigator PREVENTION: 3 CHW (colon, breast, cervical ) SCREENING: BCCCP (first part of screening and early detection, 3 navigators in diagnostic imaging for follow‐
up diagnosis) QUESTION – do imaging facilities have a procedure for no‐shows? QUESTION – community providers, who has social workers serving as navigators doing resource management? No Survivorship Navigation although some roles filled by treatment navigators. Who is served? • Patients o 20‐75% underserved o mainly in rural areas (you find more underserved/needy patients) • Family • Providers Continuum of Care Navigation Continuum: Entry points: Patients‐ • Major entry point – screening site (suspicious mammo) • When surgery is scheduled • First Med Onc./Rad Onc appointments • Inpatients • Pre‐appointment for Med/Rad Onc. • Families seen at the same time. Fiscal Issues How are services reimbursed? (see above) Evaluation What bench marks and measures of success have been identified? (what are realistic, useful goals & objectives to use?) (see above) Connection to State Cancer Plans How is this currently implemented NC Oncology Navigation Association (NCONA) has been formed providing education, resources & support for NC navigators by NC navigators. In the past Regional Community Coordinators (the regional staff of the NC Comp Cancer Program) tracked and provided resources & linkages to best practices. The division of public health evaluates and tracks the implementation of the cancer plan. Cancer Patient Navigation in Appalachia – North Carolina (page 3) Prevalence and Coverage Continuum of Care Navigating Across State Lines: Medicaid/Financial qualifying differences Lack of resources that are coming across state lines. (Calling DSS to find resources.) Florida – Called hospital and asked for Navigator. Google physician and get office number and get procedure. ACS database Issues of Special Concern: Physician excuses • Control Nurses • On their turf • Success‐ listen to concerns (follow‐
up) and create system to alleviate Accepted but some physicians don’t refer. Acceptance U/ Knowledge of program and role Fiscal Issues Differentiate roles & responsibilities of paid &unpaid How are lay navigators (community workers, volunteers) rewarded or compensated? Evaluation Connection to State Cancer Plans What challenges and barriers have been identified through evaluation? (what strategies to address barriers have been tried, adapted, useful?) How is this documented? Who is responsible? ‐‐Division of Public Health evaluates & tracks implementation of plan Cancer Patient Navigation in Appalachia – North Carolina Prevalence and Coverage Best Practices: Consortium Groups • WNC Cancer Consortium • Mountain Cancer Coalition • Regional groups with multiple counties & competing agencies. Continuum of Care Fiscal Issues Best Practices: • BCCCP & Nurse Navigators working together • Constant communication between imaging & treatment navigators • Ongoing planning committee for navigator program to work out procedures & needed changes: o Bringing service o Navigators are nonexistent for all model o Providers together to address gaps Coordination of communication with specialists and primary care practices eliminates barriers Electronic data link shares certain tests & report in WNC (17 counties) UNC Health Network group with CEOs from every hospital (16 rep) and Health Department rep (2 rep) What best practices have been identified related to financing, reimbursement, support and navigation? Examples: Evaluation What best practices have been identified related to evaluating navigation? Examples: Other Issues: 1. Are there regular education and training opportunities for navigators in your state? How are they publicized? 2. What opportunities are there for networking and communication with other navigators, families, patients, survivors, health providers etc? Is there a list serve, network, directory? 3. How would a regional cancer navigator network benefit you, your organization, clients etc? Connection to State Cancer Plans What best practices have been identified related to connecting cancer navigation to your state cancer plan? Examples: Direct membership in coalition
Regional community coordinators Reg & state coalitions WNC Cancer Consortium Mountain Cancer Coalition NC Oncology Navigator Association Cancer Patient Navigation in Appalachia – ⌧ Pennsylvania New York (page 1) Prevalence and Coverage Continuum of Care
Fiscal Issues
Evaluation Connection to State Cancer Plans Geographic Coverage: • No firm number of PN available in PA. • Some navigators have formed network of PA Navigators. • Some navigators in Appalachian PA have been identified & interviewed as part of project funded by an NCI Supplement. Greene County (Carolyn Wissenbach): Mostly in the Eastern part of the state. Not necessarily Appalachia. • Fox Chase Cancer Center has: o First site, Temple Cancer Center. o Second site, Mount Nittany Medical Center. o Control site, Geisinger Medical Center. • McGee Women’s hospital offers some services in Pittsburgh. • Mon Valley Hospital offers services through private hospital setting. • No coverage in Greene County area. • West Virginia Mary Babb Randolph Cancer Center has a PN service through the Outpatient Clinic. Indiana County (Susan Marjoris): Prevalence: Increased presence in Oncology Settings: • Erie –Erie County • Dubois‐ Clearfield County • Indiana – Indiana County • Pittsburgh – Allegheny County • State College – Centre County • New Castle – Lawrence County • Unsure of presence central to Eastern PA Coverage: • Geographical Gaps • Organizational Gaps • Lack of Awareness of PN by HealthCare New Navigators must be insightful to needs of the population that they are serving Navigators: • Many navigators focus on breast health/cancer while others focus on all cancers. • Responsibilities include assisting patients with barriers to care. • Many navigators are nurses with additional certifications while some have social service backgrounds. • Navigation is typically located at: o Community & regional hospitals o Mammography departments o Cancer centers Greene County: No one is specifically identified as a PN in our area. • West Virginia Cancer Center nearby has PN system through hospital for outpatient care. • 2 nurse clinicians assigned to specific oncologist. • Social workers for each clinic. o Care offered by diagnosis o Nothing for in‐patient, only outpatient Centre County: Facility houses: • 1 lay navigator (bachelor’s prepared w/oncology experience) • 1 Nurse Navigator Both Navigators housed in Cancer Program in Hospital. Indiana County: Types of Navigators: • Outreach Navigators: Increase awareness, provide education • Clinical Navigators: Diagnosis to Treatment • Diagnostic Navigators: Navigate through diagnosis • Oncology Navigators: Navigate through diagnosis only • Oncology Navigators: Navigate through oncology treatment only Responsibilities; Clinical and technology skills in • Diagnostics Funding: • Many breast cancer navigators have initially been funded by Komen or Avon. • Some hospitals also funded navigation even though not reimbursed through insurance. • Reasons include return on investment through patient satisfaction/retention. Greene County: Private services offered through Mon Valley Hospital are covered by the office. Services include: • Referrals to medical assistance • Food banks • Transportation services • Support groups • Co‐insurance options • ACS Look Good, Feel Better program. Each patient is followed. West Virginia – hospital pays for it. They are nurse oncologists but the job description is patient navigator Centre County: Paid for by Hospital Indiana County: Grant seeded , organizations sustain Organizations use for marketing Measure and Evaluate Services and Programs: Some navigation programs count number of patients served while others focus on • Increase access to care by reducing barriers • Decrease time between o Early detection & diagnosis o Diagnosis & treatment • Reduce missed appointments • Increase patients completing treatment, • Improve symptom management • Patient satisfaction • Patient retention • Participation in clinical trials Greene County: Mon Valley: Not done; just follow them while patient. Centre County: • # of new patients is tracked. • Continuing patients tracked by # of interactions. • Needs tracked to determine why patients are utilizing the PN. • Referral Sources are tracked to find out how patients are learning about navigation to help PN reach out to sources that are not referring patients. Indiana County • Patient satisfaction scores • Timeline for care pathway • Successfulness of evolving • Team approach to patient centered care • Evolution of a Navigator Pathway that is all inclusive How is cancer navigation addressed in your state cancer plan? Although PN is not specifically mention, it fits well under Cancer Screening and Diagnostic Follow‐
up, Treatment and Care Delivery, Quality of Life: Survivorship to the End of Life and Access. Each year in Pennsylvania, more than 70,000 patients will be diagnosed with cancer. Since improving the quality of life for cancer patients is a priority of the Department, a Pilot Patient Navigator Program was developed at Fox Chase Cancer Center. Already in its second year, the three‐year project, due to be completed by June 30, 2008, creates linkages between existing resources and services to assist patients as They make their way through the maze of tests, appointments, decisions and treatment. The Patient Navigator project’s long‐
term goal is to improve access to care by implementing a model patient navigator system throughout the state that will remove barriers to care/resources for cancer patients diagnosed with breast, Cervical, colorectal, lung and prostate cancers. • Counseling • Education • Administrative Locations types: • Outpatient Diagnostic Centers • Oncology Centers • Outreach Programs • Grant Funded Research Specific Program Locations: • Erie (Erie County) o St. Vincent Health center – Surgical oncology o Women’s Center St Vincent – Breast o Univ. PA Med Ctr. Hamot ‐ Breast • DuBois (Clearfield County) o Hahne Reg.CA Ctr. At Reg. Med. Ctr. ‐ Breast • Indiana (Indiana County) o M. Dorcas Clark Center – Breast • State College (Centre County) o Penn State CA Inst. Mt. Nit. Med. Ctr. – All Cancers • Pittsburgh (Allegheny County) o Penn Allegheny Health Ctr. – Breast • New Castle (Lawrence County) o Univ. Pitt. Med. Ctr. – All Cancers •
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Achievement of Goals Support Group input Hospital Cancer Committee Meetings review cancer by types, for example Dx with colon cancer Fox Chase Cancer Center in Eastern PA has taken on the role of leading nurse navigation in PA. PA Nurse Navigators Organization, Newsletters Web conferences to grow a standard of navigation care in PA Western PA Navigators have met several times to exchange practices, share ideas informal and on our own time Cancer Patient Navigation in Appalachia – ⌧ Pennsylvania New York (page 2) Prevalence and Coverage Continuum of Care
Fiscal Issues
Evaluation Connection to State Cancer Plans Coverage: Coverage varies across state and throughout Appalachian region depending focus of: • Host communities • Regional Hospitals • Hospital cancer committees • Mammography department • Cancer center Many programs based in mammography centers focus on breast cancer only addressing early detection and diagnosis while some also include treatment. PN based at cancer centers focus on primarily on treatment. Few include survivorship or end of life issues. Centre County (Kristin Sides): • Our navigation program: o Focuses on diagnosis through survivorship. o Addresses all cancers o Serves anyone identified as having need. • Our lay navigator: o Facilitates three different support groups o Deals with newly diagnosed patients going through treatment. Indiana County (Susan Majoris): • Erie: All Cancers – varies in each organization • Dubois: Breast – New Navigator for women’s diagnostics only • Indiana: Breast, Diagnosis to Treatment (1 navigator) • Pittsburgh: All cancers • Johnstown: All Cancers Seems to be more education and awareness. Gaps in the continuum of care once a person in diagnosed Navigation Continuum: Many cancer patients, families, and caregivers get involved in navigation at the point of diagnosis or treatment when there are barriers that interfere with the patient’s ability to understand the diagnosis and treatment options. Lay navigators have occasionally been used in northern Appalachia. They show great potential if trained effectively to work as a part of a treatment team. Greene County: Don’t use lay navigators. Centre County: • Entry points vary within our facility. We can get a newly diagnosed patient right from the radiologist’s office but we don’t get some until they are getting radiation after they have already completed surgery and chemotherapy. • Our program started with a lay navigator and was the only navigation available and after 4 years the needs grew so much we added a Nurse Navigator position to complement what was already being done by the Lay Navigator. Indiana County: • Diagnostics: tests, biopsies, pathology counseling • Diagnosis: patient and family • Beginning of Team approach to care • Decision making continuing the pathway • Further diagnostics? /treatment • Support services/resources Reimbursement: Patient Navigation is not currently reimbursed through third party payment. Komen and Avon have funded initial phases of breast health navigation for some facilities. The potential for Patient Navigation reimbursement in the future is unknown. Greene County: West Virginia‐‐‐ no third party payments, considered part of patient care. Centre County: Services are not reimbursed. Indiana County: Many Services are provided free due to lack of reimbursement • Community supported resources • ACS • Komen • Pharmaceuticals • Etc…. Medicare has cut back on payment lymphedema sleeves and hand gauntlets Development of a Care Team to provide input and solve navigation problems Identify Measures of Success: Some groups have established benchmarks or dashboard measurements like decreasing wait time for mammogram results or between diagnosis and surgical consult but could also look at: • Time to diagnostic mammogram • Time to needle biopsy • Time to surgical biopsy • Time to surgery • Rate of mammography callback • Ultrasound utilization • Pathology turnaround • Time for biopsy or surgery for breast cancer. Specific measurements could also be developed for other cancers. Greene County: Hospital reviews Indiana County: The development of Fox Chase as a leader in PA is a great move. We needed leadership In my organization: Evolving navigation pathways has been very successful and acceptable by care team Development of a Care Team to provide input and solve navigation problems How is this currently implemented? PA PN Network is sponsored by a member of the State Cancer Plan who includes network updates in monthly electronic newsletter Greene County: West Virginia: Not connected to PA State Plan Indiana County: Marcy Bencivenga, spearheading the Navigation Projects in PA Through Fox Chase – PA Navigator Newsletter, Blog Cancer Patient Navigation in Appalachia – ⌧ Pennsylvania New York (page 3) Prevalence and Coverage Continuum of Care
Fiscal Issues
Evaluation Connection to State Cancer Plans Navigating Across State Lines: May occur if the facility has navigation services. Centre County (Kristin Sides): Does not provide navigation services outside of PA. Indiana County (Susan Majoris): Identify reasons and goals for working across state borders: • Understand differences in state programs, practices • Establish appropriate connections and working relationships • Appropriate benchmarking Issues: • HIPPA – patient must sign and understand • Find providers who accept patient’s insurance or participate in state programs • Have an efficient system to manage transfer of needed information to provider Issues of Special Concern: Many navigators have had to sell PN to healthcare providers doing formal presentations to educate them. Occasionally the CEO or a provider has been a champion of the program engaging hospital officer providers who see the benefit to patients and staff. PN is valued by providers when they observe benefits to patients. A regional network would serve as both a support and a resource to current navigators focusing on the unique needs of • Cancer patients • Families • Caregivers Centre County: Health Care providers in our area have been very receptive to the Lay Navigator but it did take some time. Once the providers made the first referral and saw what a useful service it was for their patients and for them it was easy to get their buy‐in. Indiana County: Good working relationships take communication and time. Most physicians are accepting in our area, but took time for this to develop Develop a scope of practice and plan for implementation Involve physician leaders Navigator network could: • Field patient/family calls with request for resources • Answer questions • Provide resources • Coordinate and facilitate and support programs • Help to identify gaps in the continuity of care Differentiation of roles between paid and unpaid: • Many paid staff have clinical skills dealing with specific cancer related symptoms & problems. • Lay navigators can be trained to provide assistance with resources to overcome barriers. • Compensation issues need further investigation. Centre County: The Patient Navigator position at our facility is a full time paid position with benefits. Indiana County: Important not to abuse volunteer by taking advantage of them. • Treat them well. • Listen to their ideas, • Provide the resources they need • Recognition dinner • Certificate • Gift annually • Thank them for their services. Paid lay navigators would have required responsibilities and be evaluated Same process of Goal/Action Plan and Achievement I don’t have a lay navigator but it seems a close working relationship would be very important Challenges and Barriers identified through Evaluation: Challenges and barriers include economic/structural/ access issues like: • Transportation • Financial issues related to lack of insurance • Inability to afford medication • Complicated building structures and processes, etc. • Individual/social like lack of knowledge • Trust issues • Fatalistic attitude • Fear/denial • Risk factors, etc. Some successful strategies include: • Coordination of services • Specialized assistance for transportation • Insurance • Medication • Other resources Centre County: • Biggest challenge is finding or developing a patient tracking strategy that captures all important data. Institution does not have an outpatient EMR module which has been extremely challenging. • Our tracking in the 4 years since our navigation program started has undergone a lot of redesign based on the needs of the navigator. Indiana County: Loss of connection to nurse navigator after diagnosis • Developed a pre‐op visit with all patients and families How is this documented? Who is responsible? Not sure if it is documented in the current plan but it should be clearly stated in future plans. Director of our oncology center Loss of connection to nurse navigator after surgery • Developed a post‐op visit with patient and families post op • Developed Birdies Closet for resources • Knitting Circle • Journal writing group • Support group Cancer Patient Navigation in Appalachia – ⌧Pennsylvania New York Prevalence and Coverage Continuum of Care
Best Practices: Promising practices include: Access to PN: • Staff oriented to PN • Hospital faxes patient information to PN at admission • Affiliations between rural hospitals/cancer centers with academic/research/comprehensive cancer centers • PN provides services via e‐mail • PN provides services via telemedicine • Regional ACS e‐mails referrals to PN Strategies to overcome barriers: • Utilizes ACS support to locate resources • PN presentation to Social Security office lead to referrals and an expedited system of approval of application • Coalition provides credit cards for food, lodging and transportation to diagnostic and treatment appointments • PN provides a system of support • Additional support provided by financial counselor and social worker • PN developed a circle of care team for palliative care • PN assists with informed decision making Healthcare strategies: • PN is woven seamlessly into the health care delivery system • Physician/Oncologist provides clinical results to PN • Healthcare providers are oriented to PN • Research nurse trained as PN • PN provides interdepartmental navigation • Breast care center faxes the results to providers on same day of test • PN maintains a relationship with the tumor registry • Provides entire plan of action including treatment and doctor recommendation Planning and Logistics: • Patient survivor survey helped formulate patient service lines • Did focus groups with healthcare providers, patients and caregivers • Created a flow chart/diagram • Developed a checklist for each patient that mirrors process flow chart • Pulls patient scheduled by zip code to identify the counties Best Practices: • PN is well suited for many segments of the cancer continuum. • PN varies from site to site. Of the 9 interviewed in PA, many of those with PN reported involved in: o Prevention o Education o Early detection o Diagnosis o Treatment o Survivorship Many of those without navigation programs thought PN should focus on: • Treatment • Survivorship • Palliative care • End of life care Fiscal Issues
Best Practices: An October 2009 webinar on evaluation of PN sponsored by Fox Chase Cancer Center noted downstream revenue could be recovered through: • Screening Mammogram • Diagnostic Mammogram • Minimally Invasive Biopsy • Surgical Biopsy • Breast Cancer Surgery • Reconstructive Surgery • Breast Cancer Treatment Evaluation Connection to State Cancer Plans Best Practices: Promising practices include: • Reduced delays in care • Reduced numbers of missed appointments • Increased patients completing treatment Decreased time from detection to diagnosis • Decreased time from detection to diagnosis • Decreased time between diagnosis and treatment decreased • Improved symptom management • Improved quality of life • Increased clinical trials participation • Increased provider/nurse time • Improved patient satisfaction • Improved cost effectiveness Improved patient retention • Decrease outward migration of patients • Decrease anxiety and fear • Additional referrals • Improve access to health care • Improved treatment compliance through prescription assistance What best practices have been identified related to connecting cancer navigation to your state cancer plan? Examples: Efforts to gather PA Navigators through a network and web‐ and social media based methods show promise. or region to make appropriate referral Marketing and Media: • PN works closely with marketing to increase PN services awareness in community and hospital/clinic • Use of media campaign to promote PN • Developed video and brochure to market to community and provider Other Strategies: • PN works closely with competing organization’s PN to assure quality of care • PN meets patient before screening colonoscopy or mammography • Coalition plans directory of PN in the state Other Issues: 1. Are there regular education and training opportunities for navigators in your state? How are they publicized? The Pennsylvania Patient Navigation Network sponsors bi‐annual webinars focused on topics of interest among their members like evaluation. West Virginia offers workshops for the nurse clinicians and social workers. No other education we are aware of or any lay programs. 2. What opportunities are there for networking and communication with other navigators, families, patients, survivors, health providers etc? Is there a list serve, network, and directory? The Pennsylvania Patient Navigation Network recently started a website, Facebook page, blog and twitter account. http://pubweb.fccc.edu/panavnet/ http://www.facebook.com/group.php?gid=149743288388521&ref=search http://twitter.com/PA_Nav_Net West Virginia doesn’t do this because of HIPPA regulations. A group of survivors has formed on their own and they have a network but it is separate from the Cancer Center. I am not aware of a listserv in PA PAC3 is a directory of support services and centers in PA? 3. How would a regional cancer navigator network benefit you, your organization, clients etc? I think an Appalachian cancer navigator network would be of benefit to many organizations and clients if it were carefully promoted and supported. The opportunities to learn from one another are boundless. Referrals for services locally. Assist in meeting patient needs for meds and transportation. From Carolyn Wissenbach: ACS patient Navigator in Cumberland Maryland but don’t have any info. on them. The state info. is form the PA Dept. of Health web site Benefits for me: • Exchange of ideas • Peer support • Networking • Benchmarking • Educational opportunities