I was invited to give testimony at the NY State Hearings for Patient Safety. Hosted by Assemblymember Richard N. Gottfried and New York State Senator Tom Duane below is my testimony;

Improving Patient Safety In New York: Understanding and improving the current system
October 19, 2009

Include the Patient and Family in Patient Safety

Ask your doctor to wash their hands before touching you, bring a list of medications with you to the doctor, have an advocate ask questions for you if you can’t ask yourself. These are the things we are told to do to be “good” or empowered patients and stay safe in our healthcare system. But if we do these things, will we truly be safe?

Learning how to be an active patient is more than asking a doctor how many times he or she has performed a procedure. The Agency for Healthcare Research and Quality or AHRQ a branch of the US Health and Human Services says: The single most important way you can help to prevent errors is to be an active member of your health care team.

Being part of this team means understanding that hospitals are dangerous places, that medical professionals don’t always wash their hands and that medication errors are dangerously common. Being an active patient means being an informed patient and the first thing we need, is knowledge about a system that fails us more often than the public is aware.

More than 20% of adults read at, or below a fifth grade level. 90 million Americans have difficulty comprehending and complying with health and medical advice. And yet we are continually handed information to read at our most vulnerable time. When we are being admitted to a hospital with symptoms of a heart attack, when we are in labor, or have just suffered the trauma of a serious accident, are we supposed to read and comprehend material that medical professionals still don’t not follow basic safety practices such as hand washing, so we must remind them?

Safe patient care can begin at home with family, friends and even volunteers functioning as patient safety advocates. Training family appropriately to help with communication, care and treatment won’t replace competent care, but a loved one who understands what bedsores and infections look like can potentially save a life.
Nonprofit organizations that focus on diseases and health must include safety in their community educational programs. Surgery safety education programs such as the Surgical Care Improvement Project (or “SCIP”) for cancer patients can mean the difference between a positive outcome and a disastrous one. The US Department of Health and Human Services spent money on rolling out the SCIP program for patients, but does anyone even know about it?

As a patient safety advocate working with patients and families attempting to receive safe, quality care, I have had opportunities to witness some of the most wonderful treatment of patients. I have also had opportunities to witness some horrific acts that are not only dangerous but direct disregard of policies and standards that were set for safe, quality care. With first hand knowledge, I watched as my son bled to death following a tonsillectomy. Three years later, I had a child who was born severely premature. Both incidents took place in New York hospitals. I, myself, have had the chance to see the worst in healthcare and the best in healthcare. I have since founded an organization, PULSE of NY that teaches patient safety and family centered patient advocacy. We work closely with the medical community but with no formal commitment in partnership.

My work has brought us national attention because the leaders in patient safety almost all come from outside New York. There is a weaving of the patients and families voices in how patient safety should be addressed throughout the country, but not in New York. This year, as a fellow of the American Hospital Association Patient Safety Leadership Training I am being trained by nationally recognized leaders in patient safety. Even they are including me, the patient, in this extensive training.

There needs to be a place to turn to when care is below standard. Reporting bad outcomes must be made easy for the patient, the family and even front line staff. A place is needed to report unexpected events that can be responded to immediately and give the person reporting the event some piece of mind that he or she is doing the right thing. Many hospitals have rapid response teams that can be triggered by family members but no training for those family members on how to use it. There are measurements for outcomes but no one advertising their existence and there are hospital report cards that just sit on a website with no one actively acknowledging their existence to the public.

• There should be an immediate response from the hospital (within 24 hours) when someone reports a possible deviation from standards.
  
• There should be a patient safety advocate independent of the hospital in every county in the state to address patient and family concerns.
  
• Reporting of sexual misconduct should come with counseling.
  
• The untimely death of a loved one should come with a support hotline to address the unexpected death – even before the final report is complete.
  
• Patients and families need to be involved with Root Cause Analysis. Without the patient or family’s participation, you will only get half the story with important facts being overlooked, missed or misinterpreted.
  
• Patient safety committees in hospitals throughout the country often have patients involved in their work. Hospitals in NY should be required to have patient safety committees that involve their patients.
  
• Finally, patient safety needs to be included in school curriculums. Children as young as 6th grade can learn about look-a-like, sound-a-like drugs and about communication with their healthcare providers.

Patient safety should be taught the same way seat belt safety is taught, the same way young women are taught how to examine themselves for breast cancer and the same way young people are now taught about HIV/AIDS. It was only after the public was involved in prevention of these diseases that the death rate started to drop. The public also needs to be involved in patient safety to bring down the death toll from preventable medical errors. Statistics show it is only a matter of time until we all feel the impact directly.

Thank you.