A group of eleven consumer advocates on patient safety will attend the U.S. Department of Health & Human Services (HHS) meeting in Dallas this week: “State-Level Partners Collaborating to Eliminate Healthcare-Associated Infections.” The meeting will cover information related to healthcare associated infection state-level prevention efforts aimed to achieve the goals set in the National and State Action Plans. This 2009 plan set modest five-year-prevention targets for six major types of infection, which we determined wasn’t urgent enough for the almost 2 million patients who are harmed every year in U.S. hospitals.

Consumers haven’t always had a seat at the table at these important meetings that help inform state level implementation of national prevention efforts and resources. Thanks to the important work of consumer advocates to make this issue a national priority, HHS has invited us to participate in these policy meetings. Some of us were also invited to the meeting last year. We’ll attend this meeting expressing the expertise that we’ve gained over the years and use it to inform our work that lies ahead.

Meet the eleven consumer advocates who will be attending the meeting:

From Consumers Union’s Safe Patient Project: Lisa McGiffert, Director and Daniela Nuñez, Grassroots Organizer

Mary Brennan-Taylor, New York
“The death of my mother to preventable medical error, including but not limited to multiple Healthcare Acquired Infections was a defining moment for me. From that moment on it has been vitally important to devote my physical and intellectual energy to the patient safety movement. Participating in this conference along with my fellow Consumers Union advocates is important, not only to present the patient’s perspective, but to also become intimately informed about what initiatives are taking place on a national level.”

I have been focusing on educating future generations of doctors and nurses by lecturing on the unique responsibility doctors and nurses have in fostering a culture of patient safety. The lecture is from the patient’s perspective, using my mother’s case to put a face on the tragedy of medical error. The ongoing lectures take place at the University at Buffalo Medical and Nursing Schools and the Niagara University Nursing Department. In addition, I have invited a team of doctors and nurses to join me on a variety of local television, radio and newspaper interviews to discuss what patients and their families should know about patient safety. I have also participated in Grand Rounds at area hospitals.

Alicia Cole, California
I am Patient Activist who was involuntarily drafted into the war on Hospital Infections. In the summer of 2006, my two-day hospital stay for small fibroid removal turned into a journey; one month in ICU, two months in the hospital, six additional surgeries (one at the bedside with my mother assisting), a near amputation of my leg, a year and two months of twice-a-day home health care for dressing changes, five months of daily hyperbaric oxygen chamber treatments and two and a half years of treatment at a wound care center for an open, draining, non-healing abdomen. Four years later I am still in weekly physical therapy and pelvic floor rehabilitation. It has become my mission to speak for those with no voice who are going through the same recovery battle and to end preventable hospital-acquired infections. Alicia is the Founder of Alliance for Safety Awareness for Patients.

Kathy Day, Maine
“This meeting is important to me because I have suffered a great personal loss because of hospital acquired infection (HAI). I am also a retired RN. I want to see what the HC leaders in our country are doing and accomplishing with their work on HAI Prevention and Reporting. As a Patient Safety activist, I strive to get accurate and current information. Because both infection rates and preventative work are still well kept secrets in Maine, this meeting will provide me with information that I can work with to make a difference for Maine citizens. Transparency, Accountability, collaboration and effective preventative HAI work and reporting are all very important and progress is being made, but I still feel that we have a long way to go to achieve success with all of those things in Maine and across the country.”

Starting in 2009, I authored the first MRSA prevention bill in the State of Maine. The bill included ADI for high risk patients and public reporting of MRSA. I have since authored 2 additional bills after only a small portion of my first bill passed. All 3 bills were sponsored by Representative Adam Goode of Bangor, ME. I have joined two Patient Safety activist groups, The CU Safe Patient Project and IHI group of activists. I am a board member of the New Hampshire Patient Voices and a member of the newly formed NEVER group, The Northeast Voices for Error Prevention. I helped Rep. Jackie Speier of CA introduce her federal MRSA prevention bill in Washington DC in June 2009, spoke at the first World MRSA Day in October 2009. I attended a special first of its kind, meeting of consumers with the CDC in 2010, and a previous meeting with the DHHS regarding the progress of HAI prevention and reporting. I worked with the Maine Quality Forum MDRO metrics committee in 2009 and 2010, to “define” high risk patients for screening. The meetings culminated in a 6 month prevalence study of 5 high risk patient groups on admission to Maine Hospitals. I work with the Maine State Nurses Association on Patient Safety related issues like unsafe staffing levels. And, currently I am working with the Critical Access Hospitals Patient Safety Collaborative to develop a power point and video to share at a meeting with them on Sept 29. I attend any and all public meetings regarding healthcare, insurance and Patient Safety in my community. I network with many other Activists/advocates and we support each others causes. I have shared my story with media across the country and with other consumer organizations including the AARP and Consumers for Better Care. I write regularly to and for my local newspaper.

Julia Hallisy, California
Dr. Julia Hallisy is a practicing dentist in San Francisco, California. In 1989, Dr. Hallisy’s late daughter, Katherine, was diagnosed at five months of age with bilateral retinoblastoma. Dealing with Kate’s life-threatening diagnosis marked the beginning of a 20-year involvement in our healthcare system. The combination of her scientific training, her work as a healthcare provider, and guiding a child through a chronic illness has afforded her invaluable insight as an advocate for patients. The many lessons she learned during Kate’s life became the foundation for her book, The Empowered Patient: Hundreds of life-saving facts, action steps and strategies you need to know. Dr. Hallisy works with advocate Helen Haskell at The Empowered Patient Coalition non-profit organization and has worked with the California Nurses Association, the IOM Initiative on the Future of Nursing and is a member of the leadership council for the California Regional Coalition working to implement the IOM recommendations.

Helen Haskell, South Carolina
“Healthcare-associated infections, including those that have escaped into the community, are among the most serious public health issues we face. I am pleased to see the federal government becoming so involved in, and so supportive of, state-level infection programs. No state is an island. It will take all of us working together in a coherent national strategy to overcome this problem.”

Helen Haskell has been in patient safety since 2000, when her young son died from healthcare-induced infection and bleeding in a South Carolina teaching hospital. She is founder and president of Mothers Against Medical Error and co-founder of The Empowered Patient Coalition. She was closely involved in the passage of the South Carolina Hospital Infection Disclosure Act (HIDA) and has served as a consumer representative on the HIDA advisory committee and on the South Carolina Healthcare Alliance for Infection Prevention since their inception in 2006 and 2007. She also serves on national committees that address infection in the broader context of patient safety and hospital-acquired conditions, including the AHRQ National Advisory Committee and the National Quality Forum Measure Applications Partnership Hospital Workgroup and Ad Hoc Patient Safety Workgroup. Helen has worked with Consumers Union on infection-related issues since 2005.

Kevin Kavanagh, Kentucky
“We should not use underpowered studies to prevent the setting of infection control standards.”

Dr Kavanagh is the founder and Board Chairman of Health Watch USA and is an active proponent of transparency and public reporting of healthcare acquired infections. He has written numerous op-eds in State wide newspapers, testified before the Kentucky legislature and has recently published a commentary on in the Aug. 2011 Issue of the Journal of the American College of Surgeons supporting universal surveillance cultures for MRSA in preoperative patients. Health Watch USA also organizes and holds a yearly conference on healthcare transparency – www.healthconference.org.

Lori Nerbonne, New Hampshire
“Infection prevention that is driven by using data to track, publicly report, and reduce infections is at its core, providing patient-centered care. Patients are the ones whose lives are forever changed by harmful infections. They deserve to be counted, to be educated and empowered, and to have a voice.”

Lori is the co-founder of New Hampshire Patient Voices. A former maternity nurse & educator, she lost her mother in 2004 after an 8 month hospitalization from MRSA sepsis and multiple medical errors. She serves on the NH State HAI Technical Advisory Workgroup, the New England Comparative Effectiveness Public Advisory Council, and served on the committee that developed the new HAI Prevention training videos, ‘Partnering to Heal’. She has worked in partnership with Consumers Union Stop Hospital Infections Campaign and Safe Patient Project since 2006. You can reach Lori at nerbofam5@comcast.net.

Kerry O’Connell, Colorado
Kerry is a member of the Colorado Health Facility Acquired Infections Advisory Committee. A committed patient safety advocate, he calls for restoring empathy and compassion in health care. Read Kerry’s writings at http://numerators.wordpress.com/

Jean Rexford, Connecticut
“We must no longer use the word expected. We are working toward zero tolerance…because of patient safety measures, a healthcare acquired infection should be the exception not the expected.”

I am one of eleven voting members on our CT state healthcare acquired infection committee. I also sit on the state planning committee, and the education task force on infections. Jean is the Executive Director of the Connecticut Center for Patient Safety.