Creating a Longitudinal
Continuum of Access to Care
Anne Willis, MA
Director, Center for the Advancement of Cancer
Survivorship, Navigation and Policy
Heather Kapp, LICSW, MPH
Director, Access and Quality
George Washington Cancer Institute
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Objectives
• Discuss longitudinal navigation models
• Describe the DC Citywide Patient
Navigation Network as a model of a
longitudinal continuum of access to care
• Identify different navigation functions
across types of navigators
• Discuss the role of quality improvement
and patient navigation
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
GW Cancer Institute
• Mission
– Ensure access to quality, patient-centered
care across the cancer continuum through
community engagement, patient and family
empowerment, health care professional
education, policy advocacy and collaborative
multi-disciplinary research.
• Center for the Advancement of Cancer
Survivorship, Navigation and Policy
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
LONGITUDINAL MODELS
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
GWCI Longitudinal Model
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Colorado Patient Navigation Model
Source: patientnavigatortraining.org
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
DC CITYWIDE PATIENT
NAVIGATION NETWORK (CPNN)
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Network Conception
• National Cancer Institute Patient Navigation
Research Program (PNRP) funded nine (9)
site demonstration projects & tested:
• Effectiveness of patient navigation from
screening to time of diagnosis and
treatment
• Impact on patient satisfaction
• Cost-effectiveness of patient navigation
programs
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Results from DC PNRP
• 2,601 women
– 1,047 navigated
– 1,554 records-based non-navigated
• 2006-2010 at nine hospitals/clinics in DC
• Navigated women reached diagnostic resolution
for breast cancer 17 days sooner than nonnavigated women
• For those requiring biopsy, the difference
between navigated versus non-navigated
women was nearly 31 days
Source: Hoffman HJ, LaVerda NL, Young HA, Levine PH, Alexander LM, Brem R, et al. Patient navigation
significantly reduces delays in breast cancer diagnosis in the District of Columbia. Cancer Epidemiol Biomarkers Prev
2012.
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Birth of DC Network
• Expand navigation beyond breast cancer
• Expand beyond 9 sites of PNRP to 40
clinical and community sites
• Focus on service delivery rather than
research
• Utilize data to inform cancer control
planning
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of Cancer Survivorship,
Navigation and Policy
Citywide Patient Navigation Network
(CPNN) Vision
• Ensure every patient in the DC region has
access to cancer care across the continuum
regardless of race, ethnicity, sexual
preference, socioeconomic status or
geographic residency
• Improve cancer outcomes among DC patients
• Improve access to care across the cancer
continuum
• Eliminate barriers to care
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
CPNN Goals
• Help patients overcome barriers to care,
with special attention to vulnerable and
minority populations.
• Navigators help patients obtain timely,
coordinated cancer care, including
screening and diagnostic services,
treatment, survivorship and end‐of‐life
care.
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Site Selection
• GWCI serves as the central coordinator of
CPNN which is currently comprised of 36
navigators stationed at primary care, tertiary
care and community-based organizations.
• Several of these organizations have multiple
clinics served.
• One navigator also navigates for the Department
of Health's Project Wish, which provides
qualified women with breast and cervical cancer
screening at no cost.
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Active Sites
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Capital City Area Health Education Center
DC Primary Care Association
Howard University Cancer Center
Whitman Walker
Nueva Vida
The Smith Center for Healing and the Arts
MedStar Washington Hospital Center
Providence Hospital
Capital Breast Care Center
African Woman’s Cancer Awareness Association
Community of Hope
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of Cancer Survivorship,
Navigation and Policy
Role of CPNN Navigators
• Maintain communication with patients, survivors,
families, and the health care providers
• Ensure appropriate records and referrals are available at
scheduled appointments
• Arrange for language, financial, transportation,
child/elder care, insurance, medication, home health
care and other forms of support
• Connect patients to resources and support services
• Help patients learn to navigate the health care system
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
CPNN Evaluation Plan
• Demographic data
• Barriers addressed
• Resources utilized
• Connectivity of network
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Year One Accomplishments
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Year 1 Success Example
Patient Barrier
Navigation Outcome
Transportation
Tokens for assistance;
insurance support
Care adherence
Coordination among
navigators across CPNN
network
Communication
Free cell phone
Food & Nutrition
Food & Friends; Abbott
Nutrition
Substance abuse / Housing
Referral to Gift of Peace;
Halfway House
Insurance
Access to Medicaid
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Year 2 Accomplishments
• CPNN grant extended to Year Two.
• Goal: navigate at least 1,525 patients and
educate 4,301 individuals.
• Total: 2,840 patients were navigated and
8,880 outreach contacts were made.
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Year 2 Profile of Barriers
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of Cancer Survivorship,
Navigation and Policy
Year 2 Profile of Patients Served
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Year 2 Profile of Insurance Status
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Year 3
• Focus on
– Sustainability
– Quality improvements
– Improved data systems
• To date, 1,800 individuals reached and
1,368 barriers to care have been removed.
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
CPNN Summary Since 2010
• Provided assistance to 6,556 individuals and
impacted 19,087 through education and
outreach.
• Removed 24,846 barriers to care.
• Nearly 25.79% patients were uninsured.
• Top barriers were social/practical support
(16.02%), financial barriers (15.74%), system
problems with scheduling care (13.78%) and
language barriers (11.16%).
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
CPNN Summary Since 2010
• Approximately 85% of individuals served are racial or
ethnic minorities, including over 50% African American
and nearly 32% Latino.
• Patients served include the following top cancer
diagnoses: breast (68%), cervical (7%), prostate
(5.52%), and colorectal (4.55%) and lung (2.58%).
• Patients were 83% female, 14% male, and 0.1%
transgender with 48% heterosexual and 1.5% LGBT
(50.5% did not report sexual orientation).
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
CPNN Summary Since 2010
• About a third of individuals were age 50-64, with
approximately 20% age 40-49 and about 13% over the
age of 65. Approximately a quarter of individuals did not
report age.
• Almost half of individuals served live in the District of
Columbia, with 29% from Maryland and 18% from
Virginia.
• Over 1,000 were from Wards 7 and 8, the most povertystricken Wards in DC.
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Greatest Successes:
Feedback from Site Visits
• Improved patient access to services across cancer continuum
• Greater number of patients served and with more comprehensive
services
• Network serves as forum for discussion of challenges and problemsolving
• Social and practical barriers resolved to improve adherence to
treatment
• Network addressed system fragmentation to avoid loss to follow up.
• Information and resource sharing
• Relationships developed with other navigators make process of
referrals to other services seamless
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Greatest Opportunities:
Feedback from Site Visits
• Promote engagement/networking among the navigators
• Programs need to be flexible and able to expand or
contract given the variability of grant funding
• Training is critical to enable navigators to successfully
work with patients
• Continue to provide updates to resources and support
groups
• Dedicate funds to support patient transportation to and
from treatment
• Most of the community organizations that navigators
referred to were not in the network
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Lessons Learned:
Feedback from Site Visits
• Breadth of network
• Promoting the program to raise awareness in the community
about patient navigation and CPNN
• Developing standards for patient navigators to ensure a high
quality service
• Collecting data and information to support sustainability from
the beginning
• Simplifying paperwork
• Addressing patient language issues
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Challenges and Solutions
• Multiple changes to evaluation methods
• Staff turnover
• Program coordinator is a core coordination node,
providing monthly networking/training meetings and
process improvements responsive to partner
feedback. Keeps the network engaged!
• Funding and sustainability, patient navigation is not
a billable service
• Ensuring a quality standard for navigation across
the network
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Future Directions
• Pilot database to improve outcomes tracking
• Involve navigators in the metrics selection
• Collect ROI data to show program value
• Collect health equity data
• Provide weekly resource newsletter to help sites better
organize updates and resources, create blog?
• Conduct focus groups with navigators
• Revisit training preferences:
• Live? Webinar?
• Invite community organizations to participate
• Provide individualized technical assistance to help sites
show value
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Summary
• Navigation continues to show value as an important
strategy for patient‐centered care.
• CPNN provides a critical safety net for cancer
patients in the DC area that can be replicated in
other urban areas and for other diseases.
• CPNN has many accomplishments and successes
to carry forward.
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
NAVIGATION ROLE DELINEATION
PROJECT
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Role Delineation Project Overview
• Distinguish roles across CHWs, patient
navigators and nurse and social worker
patient navigators
• Methods
– Review of literature, training curricula, grey
literature
– Development of a framework
– Expert consensus
– National survey
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Existing Competencies
• CHW Competencies
– MA, MN, NM, NY, OH, TX
• Oncology Nursing Society
• Patient navigator training programs at
GWCI, University of Colorado, PNRP,
Freeman
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Preliminary Findings: Domains
Professional Roles and Responsibilities
Community Resources
Patient Empowerment
Communication
Barriers to Care/Health Disparities
Education/Prevention and Health Promotion
Ethics and Professional Conduct
Cultural Competency
Outreach
Care Coordination
Psychosocial Support Services/Assessment
Advocacy
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of Cancer Survivorship,
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Preliminary Findings: Similarities and
Differences
Domain
Patient Empowerment: Identifying
problems and resources to help patients
solve problems and be part of decisionmaking process.
CHW
Motivating individual and
community to positively change
health behaviors.
Patient Navigator
Nurse/Social Worker Patient
Navigator
Assisting patient with identifying
administrative, structural, social and
practical issues to participate in
decision making and solutions.
Assisting patients in decision making
regarding diagnostic testing and
treatment options.
Ethics and Professional Conduct:
Understanding scope of practice,
professional boundaries, assuring
confidentiality and following legal
requirements. Maintains and adheres to
the professional standards. It brings about
accountability, responsibility and trust to
the individuals the profession services.
Abiding by state defined scope
of practice.
Understanding difference in scope of
practice between licensed
professionals and non-licensed
professionals.
Care Coordination:
Deliberate organization of patient care
activities to facility the appropriate delivery
of health care services.
Case management, service
coordination and system
navigation.
Assessing and facilitating social and
practical coordination of care along
the care continuum.
Assisting patients by providing them
with coping strategies to deal with
disease, treatment and manage
stress.
Abiding by the ethical principles in
the profession’s scope of practice and
code of conduct according to
licensure.
Assessing and facilitating
coordination of psychosocial and
medical/clinical care along the care
continuum.
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of Cancer Survivorship,
Navigation and Policy
PATIENT NAVIGATION AND
QUALITY IMPROVEMENT
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of Cancer Survivorship,
Navigation and Policy
Q/PI Tools
• Understanding the problem:
– Patient Flow/Process Map
– Fishbone Diagram
– Pareto Chart
• Planning for change:
– PDCA (PDSA)
– Six Sigma DMAIC
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of Cancer Survivorship,
Navigation and Policy
Q/PI Tools: Patient Flow
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How many times is the patient passed from one person to another (hand-off)?
Where are delays, queues and waiting built into the process?
Where are the bottlenecks?
What are the longest delays?
What is the approximate time taken for each step (task time)?
What is the approximate time between each step (wait time)?
What is the approximate time between the first and last step?
Wow many steps are there for the patient?
How many steps add no value for the patient?
Are there things that are done more than once?
Look for “re-work loops” where activities are taken to correct situations that could be
avoided is work being batched?
Where are the problems for the patients?
At each step is the action being undertaken by the most appropriate staff member?
Where are the problems for staff?
Understanding the Patient Journey-Process Mapping
http://www.scotland.gov.uk/Resource/Doc/141079/0036023.pdf
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of Cancer Survivorship,
Navigation and Policy
Q/PI Tools: Patient Flow
How/where are patients
screened? What happens when
there is an abnormal finding? How
are patients notified? How do
they get to your institution?
What happens after treatment
begins? Are psychosocial needs
assessed and resources made
available? How are medical,
psychosocial and practical needs
managed and by whom?
1. Screening
3. Treatment
2. Diagnosis
What happens during the
diagnosis meeting? How are
treatment decisions made? What
do patients do when and after
treatment options are discussed?
4. Post-treatment
What happens when treatment
ends? Is there communication
with the primary care provider?
How are medical, psychosocial,
and practical needs managed and
by whom?
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of Cancer Survivorship,
Navigation and Policy
Q/PI Tools: Patient Flow
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Blasberg. ACCC Cancer Care Patient Navigation: A Call to Action http://accc-cancer.org/education/pdf/PN2009/s15.pdf
Q/PI Tools: Patient Flow
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Sandoval et al. 2013. J of the Society for Healthcare Improvement Professionals.
Q/PI Tools: Fishbone Diagram
• Problem
• Categories of problems
• Causes of problems
Why? Why? Why? Why? Why?
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of Cancer Survivorship,
Navigation and Policy
Q/PI Tools: Fishbone Diagram
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Q/PI Tools: Fishbone Diagram
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Q/PI Tools: Fishbone Diagram
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Blasberg. ACCC Cancer Care Patient Navigation: A Call to Action http://accc-cancer.org/education/pdf/PN2009/s15.pdf
Q/PI Tools: Pareto Chart
• When analyzing data about the frequency of
problems or causes in a process.
• When there are many problems or causes
and you want to focus on the most significant.
• When analyzing broad causes by looking at
their specific components.
• When communicating with others about your
data.
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Q/PI Tools: Pareto Chart
PN Barriers Pareto Chart
900
97%
100% 100%
94%
91%
800
88%
83%
700
90%
80%
77%
70%
70%
600
60%
500
50%
50%
400
40%
Frequency
300
30%
Percentage
26%
200
100
0
20%
10%
0%
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Q/PI Tools: PDCA
Plan
• Plan
– Plan a change
• Do
– Test/pilot change
Act
Do
• Check/Study
– Analyze results
• Act
Check/Study
– Make a decision: expand, alter, abandon
• CAP-Do
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of Cancer Survivorship,
Navigation and Policy
Q/PI Tools: Six Sigma DMAIC
• Define
– Define problem
Define
• Measure
– What is happening
• Analyze
– Analyze results
Control
Measure
• Improve
– Make change
• Control
– Continually monitor
Improve
Analyze
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of Cancer Survivorship,
Navigation and Policy
KEY POINTS
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of Cancer Survivorship,
Navigation and Policy
Strategies for Community Engagement
• Involve navigators in the data; move from
outputs to outcomes to truly show the
public health impact/value of the
intervention
• Come together to decide the vision
• Instead of competing over funds, find ways
to work collaboratively
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of Cancer Survivorship,
Navigation and Policy
Questions for Florida CHW Network
• What do you want to see your network accomplish?
• What is your baseline for health disparities? Where do
you want to be? How will you measure change?
• What resources do you need to accomplish your
goal?
• How will you sustain your network?
• Who are your stakeholders?
• What do your stakeholders value and how will you
demonstrate that value?
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy
Contact Information
Heather Kapp
CPNN Program Manager
Director, Access and Quality
George Washington University Cancer Institute
heatherkapp@gwu.edu
202-994-2062
Mandi Pratt-Chapman
CPNN Principal Investigator
Associate Director, George Washington University Cancer Institute
mandi@gwu.edu
202-994-5502
Center for the Advancement
of Cancer Survivorship,
Navigation and Policy