Sunday, December 28, 2008

Change America Testimony

I recently had the opportunity to speak at a Change America forum moderated by Suffolk County Health Commissioner Humayun Chaudhry. I met Commissioner Chaudhry just the week before at a meeting, and he invited me to speak at his forum. Unlike many people in health care who listen to information about patient safety and then shoo me away, Dr. Chaudhry instead, gave me an even larger forum. He allowed me to speak in front of a panel of his board.

With 11 other community members, I gave testimony about how I see health care in America needs to improve. Not by continuing to give money to hospitals and health systems but instead, to grassroots organizations that can focus on making sure their constituency are treated by medical professionals who are following best practices. Although I am skeptical that my testimony means anything to anyone, I do think that Commissioner Chaudhry may be one of those miracle finds we often look for in the world of grassroots advocacy. Following is my testimony. Please feel free to comment.

Thank you for the opportunity to address this topic near and dear to my heart.

My name is Ilene Corina, I have lived on Long Island my whole life. My parents live here, my friends and family live here and I am raising my children here.

I want to first share with you my experience in patient safety. I am a founder and the president of PULSE of NY (1) a grassroots patient safety organization offering patient safety education to the community and support for the survivors of medical injury and unplanned outcomes in healthcare. PULSE has chapters in 3 other states with representation throughout the country (2) I am also a board member of the National Patient Safety Foundation (3) (4) and co-chaired their patient and family advisory council from 2002-2006 (5). I am on my second term as a board member of the Joint Commission which accredits over 15,000 healthcare organizations and programs in the United States.(6) .

My interest in patient safety started when my only child – at the time, bled for 8 days following a tonsillectomy. After repeated trips to doctor’s offices and emergency rooms I was sent away and told “don’t worry” until one week following surgery my son died. The autopsy revealed that he died as a direct result from his surgery. A preventable medical error.

I was devastated over his death, but on top of that that no one asked me what I thought could have been done differently so this would never happen to another family. I still have never learned what happened.

Years later I gave birth to a child born at 23 weeks gestation and spent 5 months with him in neonatal ICU learning how to partner in his care, advocating for him and I started to understand the complexity of the healthcare system. He is now a perfectly healthy 15 year old. I have seen the best and the worst of healthcare.

My interest in patient safety peaked in 1999 when I became involved in the National Patient Safety Foundation which was founded by the American Medical Association because of the rising concerns over preventable medical errors. About the same time the Institute of Medicine Report was released that as many as 98,000 people die in hospitals each year from preventable medical errors.(7)

I realized that my son was not counted - he died at home.

In July 2006 another report was released by the IOM that as many as 1.5 million people are injured by medication errors each year. (8) This report received approximately 1/8 of a page in our local newspaper.

Here are my recommendations:

We need legislation and funding for patient safety initiatives directly addressing the patient and families role in patient safety.

Patient safety education should begin in high school. Teaching young people about medication safety, infections and communication between patient and healthcare providers. Teaching young people about advocating for themselves when they go off to college, how to keep records of their medical tests, medications and stay safe using respect and partnership when hospitalized. Give them the tools to become participants in their care early in life and advocates for their families later in life..

Require all disease specific organizations are teaching patient safety. Grants need to be made available to grassroots organizations at every level to include patient safety in their community outreach. Patient safety is taught at a national level – why not local?

Small group educational programs: The Agency for Healthcare Research and Quality says that “ The single most important way you can help to prevent errors is to be an active member of your health care team.” (9) Hospitals put literature in admissions packets to encourage patients to be participants. But 90 million American adults show some form of low literacy (10). So who is reading this information and when are they reading it?

We need to teach patient safety in the community
the same as teaching about high blood pressure, eating right and seat belt and child seat safety.

Develop public service announcements, which PULSE has produced many of, and literature should be in the doctor’s offices and clinics before the patient ever gets to the hospital.

Workers who use Family Medical Leave should be trained to be family advocates and learn to help prevent infections, medication errors and keep accurate records which done correctly can improve lost work time.

The culture needs to be that signs are prominently displayed in the hospital rooms encourage patient to ask for their ID to be checked and the dose of medication questioned ……… all potential errors – completely preventable.

Legislation must be passed that funding which is continually pumped into the healthcare system to research and study patient safety will go into community education. Because when it comes to measurement, one is a number.

And finally when there is an unplanned outcome, patients and their families need to be a voice in future prevention. A root cause analysis without the patient’s perspective is only half way done. We need to build a bridge back to the medical team for the patient and family to heal, help and be heard.

Until we, as patients are made aware of what patient safety means and what our participation should be, we can not play an active role and the cycle will not be broken.

Patient safety initiatives at a national level need to be brought into every community reaching every patient.

Thank you.


No comments: