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Grassroots Patient Advocates
A Presentation to the Presidential Advisory Council
for Combating Antibiotic Resistant Bacteria
(PACCARB)
May 18, 2018
Alicia Cole, Voting Member

Patient Advocates Humanize Data

Knee Surgery
MRI Cancer Root Canal
Brain Surgery Back Surgery Gout
Two Million patients a year will contract a
hospital-acquired infection while receiving care.
Incision and
Drainage
Transplant Hemorrhoidectomy

75,000 of these patients will die from
one of the five most common HAIs.
Catheter-
Associated
Urinary Tract
Infections
Central Line-
Associated
Bloodstream
Infections
Ventilator-
Associated
Pneumonia
Surgical Site Infections
C. difficile Infections

No nationwide requirement to report
data reflecting infections acquired in…
Ambulatory Surgical Centers
Long Term Care Facilities
Urgent Care Clinics
Imaging Centers

What is the reason you became a Healthcare Advocate
or began working in Patient Safety?
39 out of 50 said “Personal experience with harm.”

Nile’s Project
Carole and Ty Moss
Carole and Ty Moss became advocates
following the death of their 15 year old son
Nile due to healthcare-associated MRSA and
sepsis. They initiated and Co-Sponsored
“Nile’s Law” which mandates Public
Reporting of Hospital-Acquired Infection
Rates and mandatory Infection Prevention
education for healthcare providers. This
California legislation requires all hospitals to
have a written infection prevention
program that is reviewed at the time of their
patient safety inspection with the State
Health Department.
They also supported the requirement for all
hospitals to have an Stewardship Program.

Kathy Day became a Patient Advocate after
her father John McCleary, Sr. died of MRSA
pneumonia. He was the third of three
seniors to contract MRSA that month in his
tiny community hospital and die as result.
There was no outbreak declared, no
warning for patients, and no change in
preventative measures, like Active
Detection and Isolation (ADI).
She was told “there isn’t much we can do
about these infections.” So, she began a
campaign in Maine to mandate MRSA ADI
in Maine Hospitals. Just a few months
after John died, a law was passed to screen
all high risk patients for MRSA on hospital
admission.
Kathy Day, RN
McCleary MRSA Prevention

Victoria and Armando Nahum became
advocates in 2006, when they
discovered that three family members
had contracted infections during their
medical care in three different
hospitals, in three different states in a
10-month period. Ultimately their son
Joshua died of his infection. He was 27.
They went on to pass Patient Safety
Legislation in Georgia and began
collaborating with the CDC on multiple
infection prevention, patient safety,
pubic education and awareness
campaigns.
Victoria and Armando Nahum
Safe Care Campaign

Grassroots Patient Advocates: Unsung Heroes

Did you have a background in Healthcare, Patient Safety or
Infection Prevention before becoming an advocate?
36.00%
18
64.00%
32
Housewife Business Owner Engineer
Research
Scientist
Teacher
Archaeologist Nutritionist Dentist Seamstress Actor
Marketing
Executive
Financial Analyst Plaintiff MedMal
Television
Producer
Aerospace
Engineer
Health Dept
Investigator
Restaurant
Owner
Account
Manager
Real Estate Loan
Officer
Construction
Contractor
News Producer Nurse Audiologist Accountant
Nat’l Practitioner
Data Bank

75% Speak at Health Conferences, Patient
Safety Summits, and industry meetings.
Provided educational presentations, classes
or workshops to the healthcare community.

What are your main areas of focus and concern?
(Choose up to five only)
ANSWER CHOICES RESPONSES
Patient Safety 72.00% 36
Infection Prevention 52.00% 26
Legislation & Policy 46.00% 23

Advocate Summits at the CDC
What’s new
in the Lab?
Videos &Photos
We work on
Campaigns
We roll up our sleeves and get to work!
Including with Dr. Thomas Frieden

We have an education day learning
about current policy and proposed
legislation, Antimicrobial research,
and Antibiotic Stewardship. ~ Our
class had farmers and we learned
about Antibiotic-free farming!
Each year the Pew Charitable Trust brings
in a class of “Supermom” advocates.
Feeling confident and well
trained… We hit THE HILL!
Kathy Talkington, Project Director

25 of the 50 Advocates Have Passed Laws
The California Healthcare Facility Infection Prevention Act “Nile’s Law”
Washington State Medical Board Transparency Law
Michael Skolnik Medical Transparency Acts
Lewis Blackman Hospital Patient Safety Act
Maine LD 1038 Act to Prevent MRSA SC Hospital-Acquired Infection Disclosure Act
Illinois MRSA Screening & Reporting Bill
CA Hospital Antimicrobial Stewardship Law

CU Safe Patient Project Training
Training by State Annual Power Advocates Summit in Yonkers
Former President of
Consumer Reports
Jim Guest teaching
on advocacy.
Lisa McGiffert
working with
Advocates.
For over a decade the SPP has provided
scholarships for travel to meetings and
conference for advocates. We are
eternally grateful for all they’ve done.

Advocates working with the
Consumers Union Safe Patient
Project have helped initiate
infection reporting legislation in
43 states, 37 of which have now
passed into law.

Power of the Consumer!
2011: CDC reported 58% decline in ICU CLABSIs over 9 years during which reporting began.

Margaret Mead
“Never doubt that a small group of
thoughtful, committed, citizens can
change the world. Indeed, it is the
only thing that ever has.”

THANK YOU
For this opportunity
to show what
Grassroots
Advocates
can do!
Hospital Infection Survivor
Patient Safety Advocate
Voting Member PACCARB
Alicia Cole
Twitter: @MizCole2u
@SafetyASAP

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Grassroots Patient Advocates: Unsung Heroes

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