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.


1.http://www.pulseofny.org
2.http://www.pulseamerica.org
3.http://www.npsf.org/au
4.http://www.npsf.org/pr/pressrel/2002-12-02.html
5.http://www.npsf.org/pr/pressrel/11Sep02.html
6.http://www.jointcommission.org/AboutUs/Fact_Sheets/board_commissioners.htm
7.http://books.nap.edu/openbook.php?isbn=0309068371&page=1
8.http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=11623
9.http://www.ahrq.gov/consumer/20tips.htm
10.http://www.nci.nih.gov/cancerinformation/clearandsimple

Medication Safety Posters

We are moving forward. Approximately 10 more people have learned about medication safety and best practices for safe quality care. The first year students of Farmingdale College Graphics Design Class created some great medication safety posters incorporating the concept of low literacy. The posters covered look-a-like, sound-a-like medication, checking 2 forms of ID when hospitalized and the proper measuring devices for dispensing liquid medication.

I went 3 times to the class. The first was to do a presentation about medication errors, drop off literature and let the students know some statistics. I left them with websites and additional information. The teacher explained how they needed to do the artwork.

I came back a few weeks later and reviewed and critiqued their work. Could I "sell" the subject? Did they "get it" through their drawings and their art work? Were they relaying the message? If not, they needed to try again. A final look was to see if they had any touch ups that needed to be done. Were they straying from the point? Was their work understandable? Did they have the facts right? Was it too wordy?

These posters could easily be used at the local pharmacy or in the doctor’s office describing inhalers that look alike but are used differently. The young woman who designed a poster about inhalers that look a like took out of her own pocket a red inhaler that is not marked or labeled for proper use. I was surprise myself because the inhalers I have seen are blue, purple or white. I have never seen a red inhaler so really would not know what it’s use would be! It wouldn’t hurt the manufacturers to get together and develop uniform designs so we can at least recognize the colors.

We had a visitor from the state patient safety center, North Shore LIJ Health System and the student nurses came in to view the posters and reaffirm the need for patients to participate in their care for safety. They agreed it is a culture change but a poster over every bed suggesting the medical team should be checking 2 forms of ID on the drawing of an arm band was something they all agreed may actually reduce medication errors. Seems like a “no brainer” to me!

Medication Safety Through the Eyes of Young People

I had the opportunity again to meet with young people studying graphics design at Farmingdale University College on Long Island to develop patient safety posters.

This year, we are focusing on medication safety and low literacy. Last year was Infections.

There is no better way to educate the community about patient safety than to take the minds of young people before they have been molded to what society wants them to think and help them understand what medical errors and patient safety is about. The facts and statistics are enough to be educational but the tools and an understanding about the patients role in patient safety are crucial.

Using the information I gave them, as well as research on their own, they are coming up with brilliant ideas to educate and advocate for medication safety, specifically for people with low reading skills, through art work. Kudos to teacher Diane Hawkins for caring enough to not only develop their art skills but to educate them in this important area that would otherwise not reach them!

Happy Holidays?

For people who have traveled the road of medical injury or loss of family because of the medical treatment they received, there is very little, if any support system out there for them.

I remember going to The Compassionate Friends, a support group for parents who lost children, following the death of what was my only child years ago. This group was a life saver for me but our friends were now much older because people my age were having children and had children to be with for the holidays. The people I was drawn to had adult children out of the house and were available to go to Atlantic City on Christmas Day; a place where there were no children.

There are support systems in place for survivors of suicide, murder victims and domestic abuse. There is support for the gay community, war veterans, breast cancer survivors and people who are overweight. But many of these people are satisfied with the medical team and just as I found when I went to The Compassionate Friends, the healthcare system helped them through their troubled times.

As we move to develop a stronger support system for medical injury survivors, we also need to recognize that there is a need for this support for those left behind or living every day with the reminder that the system they trusted to help them, didn’t.

Compassion in Health Care

I recently had the honor of speaking at the Colorado Patient Safety Coalition’s 8th annual conference. This coalition is made up of professionals who are moving forward in the advancement of patient safety. The conference was only one day but very informative and probably one of the better conferences I have ever gone to. I heard Dr. Nancy Nielson, President of the AMA speak about the loss of her dear friend from a medical error and share her pain as well as her frustration. I am no longer amazed at who, and how many people have experienced first hand the harm done by the medical system (there is no doubt all the good there is done). It has just become a matter of time until those who have not experienced a medical error or adverse event, will.

I had the opportunity to have dinner with and hear Dr. Robin Youngson speak about Compassion in Healthcare. It’s a way of life that may need to be learned but is well worth the time. To get to hear Dr. Youngson was an honor. I can only hope that some of him can rub off and I could learn from him the meaning of compassion in every day living. You don’t need to be a doctor to learn to be compassionate, just human.

Saying Sorry

The staff who work in the hospital still are not very quick to say “I’m sorry” if there was an injury or death because of their medical care. They will say “I’m sorry” if the patient died from cancer, old age or a car accident. But, bring a fairly healthy person into the hospital to get a routine procedure that leads to infection, and then death, chances are you will not hear an apology. Why is this?

I don’t have the answers. Unfortunately it seems inhumane – but it’s not illegal.

Recently I had the honor of accompanying 3 mothers of young children who had bad experiences in a local hospital to visit with the state Department of Health. They were not only angry about the care (or lack of care) received but also at the way the state handled their complaint(s).

It’s not easy getting an appointment to visit with the people who make the decisions on how our state runs but I thought our time was used well.

Following the 90 minute meeting, one of the people in the room shook the hand of one of the moms and said “I’m sorry”. Words that many survivors of medical injury hope to one day hear. She was relieved and impressed that he spoke those words.

“No one has ever said that to me” she said on the car ride home.

If there is still trouble in expressing remorse, than how can we dare trust these same people to make life saving decisions for us. Do they care if we live or die? If they care than they should feel free to show it. They can cry, laugh and for goodness sake say “I’m sorry”!

Why Sue?

Why do people sue their trusted doctor or hospital? Sometimes it’s because they just have no choice. It becomes a battle of the fittest when a corporation has the right to not answer questions, not meet with a patient or not even address the death or unplanned outcome of care.

A recent call to a major health facility left me wanting to tell the patient “get a lawyer”. But that was not what the patient wanted. My goal is to learn what the patient’s needs are. Not what mine are.

The patient was willing to meet with an administrator at this hospital to learn what happened during her surgery that seemed to concern other doctors enough that they would each tell her to go back to the original physician that did the surgery.

“No one will treat me” she said. Plus the painful symptoms following her surgery made me realize that maybe something did go wrong. I can only encourage her to seek medical attention of which she has tried. They did not tell her she was imagining things but instead, she told me that 2 different doctors told her there were problems that needed to be addressed by the original physician.

The original physician would not see her. Do I need the details? Absolutely not. But, when I called the hospital and spoke to a colleague, she thought a lawyer there may be the best choice. Unfortunetly, the lawyer probed me with questions of which I did not have the answer. I was just trying to make the contact for this woman who was scared and alone so she could make one call and have some questions answered.

Instead, the lawyer left me with the task to get more information. By the time I hung up the phone, I wanted to call the patient and suggest she needs a lawyer. Instead I called her and explained that they want more information before they meet or even speak with her. I think she got a lawyer.

Critical Communication

While on an airplane this week I was close to the front and smiled as the flight attendant looked frustrated when she rambled some words about meeting our luggage when we arrive at the “jetbridge”

She saw me watching her frustration and offered an explanation. “I will have 40 people asking me where their luggage is when they get off the plane” she said. ‘I just told them but they don’t listen.”

I asked her if she ever listened to herself and heard what it was she was saying. “I know that my luggage won’t be waiting for me” I told her. After all, I just used the same airline the day before and I had to wait for my luggage to be brought out.

“How about you tell them to wait for their luggage?” I asked her. She acted like I just discovered a long lost secret. She told me that this was a great idea. “And what was that word you used where our luggage will be?”

She described the jetbridge as the walkway where the landing meets the plane. “And how many people do you think know what a jetbridge is?” Or, I wondered, hear what she is saying through the sound of the engines.

While waiting for the plane to park at the gate, we decided together that she would now tell people to leave the plane onto the ramp and move to the right and wait for their luggage. I wonder if she will still have people asking anymore where their luggage is.

Health Literacy (my opinion)

I am a big supporter and believer that there is a problem with “health literacy” in this country. Described by the American Medical Association, Health literacy is “the ability to obtain, process, and understand basic health information and services needed to make appropriate health decisions and follow instructions for treatment.”

The AMA Foundation came out with a film being used to explain health literacy to the medical profession. Feel free to watch the film and come back with your own opinion. View film here

If, I could speak to Mrs. Walker, I would first tell her that intelligence is not about using big words that others don’t understand. Actually, using “big” words is actually a sign of insecurity or it can even be inconsiderate. People know what others can and can not understand – in most cases. If someone is considerate, in tune to others feelings or comfort level, they should recognize if someone does or doesn’t understand.

Mrs. Walker keeps using the word “intelligent” which makes this film good for the doctors, but what does it do for the rest of us who do not have a an education in health but may be brilliant in other areas?

Measure the Living!

Aha, you measurement people! So, you say we can’t measure lives saved? Well we can, people who advocate for themselves or others have begun to speak up. A recent story was printed on the CNN.com website Empowered Patient that tells the experience of actor Evan Handler and his advocacy for himself why hospitalized for 8 months.

Other stories that we don’t read about like the 4 moms who pulled their kids out of a Long Island hospital also show how advocating for your family may save lives.

We need to start learning about people who speak up and get action so we can begin to report on these stories. This is our measurement! If you work in health care and a patient has spoken up, and it made a difference, I want to hear from you! If you have advocated for yourself or a family member and it’s made a difference, tell me your story! Go to PULSE of NY and link to Share your Story.