The document discusses the role of the Patient Advocate Foundation (PAF) in incorporating patient voices into clinical delivery models to promote person-centered care. It highlights the foundation's services, such as financial aid and case management for individuals with chronic illnesses, and emphasizes the importance of personalization in care to improve patient outcomes and reduce costs. Additionally, the document outlines the significance of listening to patients and integrating their preferences into treatment decisions to enhance the quality of care.

1. Alan Balch, PhD
February 11, 2021
Incorporating the Patient Voice into Clinical
Delivery Models for Person-Centered Care

2. Patient Advocate Foundation (PAF) is a
national 501(c)3 non-profit organization
which provides case management
services and financial aid to those with
chronic, life-threatening and debilitating
illnesses.
Our Mission

3. PATIENT ADVOCATE FOUNDATION SERVICE AREAS
FINANCIAL
SUPPORT
PROGRAMS
HEALTH SERVICES
RESEARCH
INITIATIVES
SPECIAL EVENTS
PATIENT IMPACT
PATIENT
EDUCATION &
EMPOWERMENT
CO-PAY RELIEF
PROGRAM
CASE
MANAGEMENT
HEALTH EQUITY
& COMMUNITY
ENGAGEMENT

4.  Getting the right help, to the
right patient, at the right time.
 Listening to and documenting
the real and immediate
problems a patient is facing.
 Figuring out how to help them
in ways that matter to them.
 Average of ten days to close
with nearly 20 contact per case
Precision Navigation
“PAF’s service was absolutely excellent and my
case manager was a godsend. I needed
assistance with disability and her handling of my
issue was so professional.”
Michael | Pennsylvania
Cancer
4

5. Social Determinants of Health

6. ISSUES:
 African American male in his 70’s
 Insured
 Diagnosed with bladder cancer
 Needed help with unpaid medical bills
 Requested assistance with utility
expenses
PAF STEPS TO RESOLUTION:
 Patient lived on a fixed income and was unable to
pay outstanding medical bills
 There was a need for assistance with an
outstanding utility bill as well
 Facilitated enrollment into the Extra Help
program – securing assistance with future medical
co-payments
 Connected him to multiple resources for rent,
utility and nutritional assistance - including the
state LIHEAP program for heating assistance
 Organized a series of conference calls to the
patient’s medical center to research possible
charity care options – these efforts established his
eligibility for assistance
 Subsequent follow up confirmed that charity
care had been approved and the patient’s previous
balance was completely written off
A CASE STUDY

7. Building an
Environment
that elevates
the Patient’s
Voice
Respect—seeing and
treating each person as an
individual
Listening—a genuine two-
way discussion
Personal Connection—
wanting a relationship, or
to be acknowledged on a
personal level
7

8. Disease-directed Treatment + Quality of Life
Value-based
quality care
Skilled communication and coordinated team-based services
WHAT MATTERS TO THE
PATIENT
• Change in functional status
• Maintenance of income
• Stress of illness on family
• Loss of control
• Financial and logistical burden
• Concerns about stigma of illness
WHAT’S THE MATTER
WITH THE PATIENT
• Treatment and disease side effect
management
• Coordination across multiple
specialists, subspecialists and
settings
• Evaluation of key clinical
outcomes

9. • Disease and illness are very
personal and vulnerable
experiences.
• Personalization identifies
appropriate and evidence-based
variation in care based on the
unique characteristics of the
individual.
• This approach should generally
provide better outcomes at lower
cost by getting the right services
to the right the patient as soon as
possible.
Personalized
Care
(not just treatment)
Person-Centered
Outcomes
Personalized
Decisions and
Planning
Personalization
is at the heart of
person-centered
care.
9
The Pillars of a Person-Centered System

10. Shared Decision Making Care Planning Measurement
• Data collection and sharing to
track adherence and progress
• Patient Reporting on QoL,
functional status, health status
and safety
A Systems Model for Person-Centered Care
QoL = Quality of life
Decision Support Tools
Care Coordination and Navigation
PROs

11. The Patient Voice in Shared Decision Making
The promise of person-centered care is to align two very important sources of knowledge to enable the delivery
of co-created care that integrates the medical evidence with personal preference.
The process must be grounded in collaborative, cooperative relationship and open communication that
personalizes options based individual patient preferences and characteristics.
Medical
expertise about
Treatment
options and
side effects
Evidence
regarding
benefits, risks,
and costs
Right decision for the
right patient at the right
time
Patient and
caregiver
expertise about
what matters
most to them
Unique
characteristics
of the patient

12. Person-Centered Outcomes
• Outcomes should reflect things that matter to the patient.
• Need to think beyond just traditional clinical outcomes or standardized
measures for quality of life.
• Some of the outcomes need to be personalized to at least the unique
attributes of the disease being treated, and the treatment being used.
• Potential examples include minimizing work disruption, transportation
burden, caregiver burden, and financial distress.

13. Thank You!