Partnering with

Patients:

A Bed’s Eye View

Tiffany Christensen

Where we’re going…

A “Hybrid Patient” Perspective

• PFCC/PFE/PX

• Patient Activation

• Kelly Clarkson

A Bed’s Eye View

Diagnosed

at 6 months

old with the

gift

of cystic

fibrosis

I had a relatively normal childhood

I had my first

hospital stay at

Age 12

I had three weeks

of intravenous

antibiotics and got

my first taste for

the need to be an

advocate

This was just

the beginning…

There would be

countless more

days spent in

the hospital

during my

lifetime

By age 21, I was sick almost all

of the time.

I was attending the North

Carolina School of the Arts and

I just couldn’t keep up.

I had to give up my Hollywood

dreams and drop out.

I was on

oxygen getting

tube feedings.

The doctors

put me on the

list for a

bilateral lung

transplant.

I waited 4 years for my “call”

I was 95 pounds and

my lung function was

25% of capacity

Facing Medical Error

April 4th, 2000

I was healthier and puffier than

ever before!

In June of 2002,

my lung function

started to drop.

I was diagnosed

with my second

terminal illness 6

months later.

I had Chronic

Rejection.

Within two years, my lung

function had dropped to 10% of

capacity.

I was 73 pounds.

I was dying and the doctors

gave me 6 more months to live.

I asked my

doctors if I

could have a

second lung

transplant.

They said no.

After the stages of grief…the

soft arms of acceptance

We got a new

transplant

coordinator.

On March 28, 2004

Despite my

team’s

concern, the

recovery was

easier than

the first time.

Unlike after the first time, I was

not confused about what to do

with my life.

I felt a strong calling to reach

out to others touched by illness.

I wanted to share what I had

learned…

Duke PAC

Is Partnership Possible?

Overall, I saw other people…

So much to

learn about

something I

thought I

already

knew!

From the IPFCC:

…grounded in

mutually

beneficial

partnerships

From the IOM re PFE:

…patient values guide

all clinical decisions

Person Centered

defined by IHI:

…genuine

partners in their

care

PFE = Kelly Clarkson

Approach 1:

Better infusion of PFAs into

(important) daily operations

PFAC Table

Task Groups/Speaking within organization

Peer Rounding, “Secret Shopping”

Interviewing

PFAs in RCAs

PFAs at the board level

PFAs as lay navigators or “activation coaches” in the community

Approach 2:

Build Authentic Partnership

through PFE at the bedside

(Bedside Shift Report, Shared

Decision Making, etc.)

Current State: How are we doing with co-designing care?

S TRENGTHS

W EAKNESSES

O PPORTUNITIES

T HREATS

Negative

Internal

factors

External

factors

Positive

We trust the education and skills of the

provider. Now it’s time for the provider

to help the patient trust him/herself.

What is Patient Activation?

Patient activation is a

behavioral concept…

It is defined as 'an

individual's

knowledge, skill, and

confidence for

managing their health

and health care'

(Hibbard et al 2005).

May 7, 2014

Staying the course even under stress

Taking action to maintain

and improve one’s health

Having necessary

confidence & knowledge to take action

Believing the patient role is

important

Adapted from Patient Activation Measure (PAM)

Patient Activation

Passive

Advocates

Activated Dictate Care

Consider pt. input

Co-Design

Care

Patients & Families Healthcare Providers

Improved adherence

Improved safety

Reduced readmissions

Reduced ED visits

Improved overall outcomes

Optimization of Care

Activation addresses many of today’s most

pressing concerns

A bird sitting on a tree

is never afraid of the

branch breaking

because her trust is not

on the branch,

but on her own wings.

Before any of that mattered…

I had to admit something.

First, I had to understand

my state of being

• Emotional exhaustion

• Depersonalization

• Inefficacy

(I now know these are the

top 3 signs of burnout)

All of the symptoms of burnout

block partnership

Teressa’s story

Find an outlet…stories, honesty

Thank you!!

Tiffany Christensen

Patient & Family

Engagement Specialist,

(919) 677-4119

www.sickgirlspeaks.com

Find me on Facebook:

“Tiffany Christensen is

Sick Girl Speaks”