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Grassroots Patient Advocates: Unsung Heroes

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Alicia Cole
Alicia Cole

This video is from a presentation made to the Presidential Advisory Council on Combating Antibiotic Resistant Bacterial (PACCARB) by Voting Member, and Patient Safety Advocate, Alicia Cole. For over a decade, Grassroots Patient Advocates have been a driving force for Safety, Transparency, and Quality Improvement in healthcare delivery. Most have been ushered into their work involuntarily through tragic experiences and have committed to building an American healthcare system that is better than when they found it. The video shares a glimpse of the work done by 50 national advocates who focus on infection prevention and control, transparency, education, and awareness.

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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.
Niles 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 Niles 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 isnt 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 Natl Practitioner Data Bank
75% Speak at Health Conferences, Patient Safety Summits, and industry meetings. Provided educational presentations, classes or workshops to the healthcare community.
Health Fairs and Expos
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 Whats 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 Niles 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 theyve 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

  • 1. Grassroots Patient Advocates A Presentation to the Presidential Advisory Council for Combating Antibiotic Resistant Bacteria (PACCARB) May 18, 2018 Alicia Cole, Voting Member
  • 3. 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
  • 4. 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
  • 5. No nationwide requirement to report data reflecting infections acquired in Ambulatory Surgical Centers Long Term Care Facilities Urgent Care Clinics Imaging Centers
  • 6. What is the reason you became a Healthcare Advocate or began working in Patient Safety? 39 out of 50 said Personal experience with harm.
  • 7. Niles 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 Niles 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.
  • 8. 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 isnt 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
  • 9. 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
  • 11. 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 Natl Practitioner Data Bank
  • 12. 75% Speak at Health Conferences, Patient Safety Summits, and industry meetings. Provided educational presentations, classes or workshops to the healthcare community.
  • 14. 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
  • 15. Advocate Summits at the CDC Whats new in the Lab? Videos &Photos We work on Campaigns We roll up our sleeves and get to work! Including with Dr. Thomas Frieden
  • 16. 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
  • 17. 25 of the 50 Advocates Have Passed Laws The California Healthcare Facility Infection Prevention Act Niles 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
  • 18. 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 theyve done.
  • 19. 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.
  • 20. Power of the Consumer! 2011: CDC reported 58% decline in ICU CLABSIs over 9 years during which reporting began.
  • 21. 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.
  • 22. 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