Friday, September 16, 2022

How Far We Have Come? Or Not.............

 Two Days of Learning 

I just spent two days at the Health Care Advocate Summit.  I planned to go to see what is happening in the world of patient/healthcare advocacy.  First, we should understand the many different areas of advocacy.

There are advocates who work for a healthcare institution, work for “big pharma” (pharmaceutical companies), who work out of doctors’ offices and yes, independent patient advocates who are hired and paid for by the patient and/or the patient’s family.  There are advocates who specialize in healthcare billing concerns, insurance questions, access to medical care and treatment, and financial navigation.  Many independent patient advocates may pay attention to those areas and have an expertise, but others may focus on rare diseases, chronic medical conditions, older adults, pediatrics, cancer, etc.  I’m sure you get the idea.

Though this conference was both virtual and in person (I chose to be there in person to meet some of the people I have already met over Zoom), the “independent” patient advocates seemed to be very few.  Missing were the words “patient safety”.

Though I get that people who have an illness need help navigating the health care system, getting proper medication or assistance with their plan of care, the word “safety” was never used until I brought it up.

While most patient advocates seem to be on a mission to help people get well, we are missing the point that medical errors, which happen to the people using the healthcare system, are still a serious problem. The speakers at the conference often sounded like commercials for the companies they worked for. It seemed like a competition about which company advocates should use for their clients.  Much of the information was important and I learned a lot as well as got some good resources I might use. But still, medical mistakes and injury is a huge obstacle to getting well. 

When a speaker talked about insurance companies and third-party administrators (TPA’s) that provide administrative services for self-funded or self-insured health plans, I asked why educating the public about medication safety isn’t part of the dialogue in saving money for these companies. After all, each year the U.S. Food and Drug Administration (FDA) receives more than 100,000 reports associated with a suspected medication errors, and each year in the United States alone, 7,000 to 9,000 people die as a result of a medication error.  To the speaker (and audience) I cited the statistic that medication errors cost $40 billion each year. In addition to the monetary cost, patients experience psychological and physical pain and suffering as a result of medication errors.(1)

So, I never did get an answer because though the speaker agreed that it’s a problem, he explained that the public or consumer is “not ready” to be educated on medication safety. I strongly disagree, and our Pulse Center for Patient Safety Education & Advocacy’s work in this area, assisted by other patient safety leaders suggests just the opposite.

I did learn some other things, such as where people who need financial support for their illness may be able to get it if they can’t afford their medications or medical care. It all depends if the funding is available.

Not sure how far we have come in 25 years. 


Saturday, August 20, 2022

Be Aware of Medication Errors

 Medication Error Exposed

Recently I was with someone who picked up their medications from the pharmacy, signed for the five medications and we left. In the car, my passenger looked at the medications and there were six.  One had a name, address, and phone number of someone my passenger didn’t know.

At this major chain store pharmacy, a customer was given the wrong medication and walked out with it.  This is not the first time.  We returned the medication.  The woman who I returned it to did not apologize.  She only said, “I’ll take that back”.

This is why it is so important for people to talk about safe medical care and treatment.  In the Pulse Center for Patient Safety Education & Advocacy 2022 Patient Safety Symposium we learned about medication errors and how they happen. Check the name of the person and the medication when picking up medication was part of the medication safety presentation.   If we don’t share amongst each other what can go wrong, how can we help avoid an injury or worse.  Imagine if the person in my charge took that medication because many people don’t bother reading the label.  It may be only because there were five medications, we were reviewing which ones they were.

The woman who gave them to us, I’m confident, did not do it on purpose.  Reporting her would not matter and may only bring unwarranted discipline.  She was probably embarrassed enough.  What we DO need are more programs where the public is made aware of these potential errors, and we can be ready to catch them.  Pulse Center for Patient Safety Education & Advocacy offers these programs.  I wish more people would support this.

PS: Giving out the wrong medication also shared another customer’s name and address and what medication they are taking.  I’m not even addressing the lack of privacy here.

Would you have handled this differently?

Sunday, June 26, 2022

My Thoughts on Roe Vs Wade and Patient Advocacy

One Advocates Opinion

Roe Vs Wade is getting plenty of attention now that it has been overturned.  There are marches and demonstration and plenty of angry people and for years there have been marches and demonstrations outside abortion clinics too.  If you wonder if I have an opinion, I do, but you won’t hear it from me.  Let me explain.  It’s the work that I do that keeps me keeping my opinion on medical or healthcare matters to myself.

As a patient’s advocate, do I have a right to not take a case because I don’t support a person’s decision?  Years ago, a volunteer told me, after starting to work with us, that she could not be an advocate for people who are transgender.  She would be willing to pray for them, but could not be a patient advocate and support them.  Of course, she was soon gone from Pulse, but it has always left me wondering if advocates can truly advocate for someone with different beliefs or values.  

Patient advocates are human and if someone were asked to be a patient advocate for a young woman having an abortion and the advocate did not support abortion, could the advocate do it?  Should the advocate be expected to do it?  Should an advocate share their beliefs and values before taking on a client?  Or just turn down a case?  If they turn down a case, does that mean an advocate does not truly have the patients best interest front and center but instead, has their own values before the patient’s needs?

When I did a training with a hospitals leadership on working with patients who are disabled, one of the senior leaders said that people with physical disabilities are so much extra work when they must deal with wheelchairs. The others in the room gasped but I suggested that the honesty was refreshing.  She was facing the elephant in the room and now we could discuss it and find a way to deal with it.

I believe that if we are truly put on earth to help people, our differences should make us unique and interesting.  If we are to support people as their advocate, we must meet them where they are and take into consideration that we all do not have the same beliefs or values.  It may be a case-by-case situation but I just wanted to share that I’m OK with people who believe differently than me.  It won’t affect my work.  

I would love to know what others think.

Sunday, May 8, 2022

Don't Ignore the Life Saving Information in Small Print


Articles We Can't Ignore

There are many academic articles and newspaper reports that we may read, say “wow” and then move on.  Sometimes we won’t read them at all.  But there lies the problem, one I have been trying to address for 25 years.

Here is a perfect example.  This article titled    Candida auris Rapidly Recontaminates Surfaces Around Patients’ Beds Despite Cleaning and Disinfection discusses how hospital rooms are recontaminated with germs after a cleaning,  Environmental surfaces near C auris-colonized patients were rapidly recontaminated after cleaning/disinfection.”

The reason this matters to the ordinary person with no medical training or infectious disease background, is because as a patient advocate, I wipe down the patient’s room with disinfectant before and after a patient is treated.  I am often told by staff, “we cleaned that already.”  But it doesn’t matter.  We don’t know how well the cleaning is and thanks to the research that is done, but too often ignored, here are the facts that the cleaning isn’t done as well as they want us to believe. 

In this case, according to the Centers for Disease Control, candida auris is an emerging fungus that presents a serious global health threat. It is often multidrug-resistant, meaning that it is resistant to multiple antifungal drugs commonly used to treat Candida infections. Some strains are resistant to all three available classes of antifungals.

Though we may not be able to kill all germs as an active patient advocate or caregiver, the more we try by being involved and not an observer in our safety, the better off we will be.

Monday, April 18, 2022

Actual Letter to a Medical Practice

Could This Letter Be Going to Your Medical Practice? 

(Names have been removed)

Dear Office Manager,

I am writing this letter with much regret.  As a professional patient advocate, I have accompanied many people to their medical appointments and hospitalizations.  I have visited your facility numerous times throughout the years with clients, family members and for my own medical care. I have put off writing this letter hoping each time, that practices would change. 

It seems handwashing is just not part of the standard of care at this practice.

When a patient is brought into the room and blood pressure is checked and the patient is being prepared to see the doctor, the medical staff have touched doorknobs, the clipboard, the computer and then the patient.  When I ask them to wash their hands before touching the patient, I am told “I did already”.

Following the care given to the patient, I wipe down the patient’s skin, myself hoping to remove any germs being spread. Most recently, after checking my own vitals, the young woman opened the garbage pail (which has a foot pedal) with her hand, and then left the room using the doorknob. Often this kind of thing happens so fast, a patient doesn’t have time to react.

When another young woman came into the room and immediately washed, I thanked her, and she said she did so because she remembered me asking last time. 

I believe that handwashing in front of the patient is as much about trust and respect as it is about cleanliness.  If you do not wash in front of me, or use hand sanitizer, you obviously don’t respect me, so how can I possibly trust you?  After all. Isn’t this one of the first things medical staff learn?

Though your staff are not alone in their poor hygiene practices, they seem to be consistently unsatisfactory in all the medical visits I attend with patients.

According to the CDC, in a healthcare setting, staff are expected to use an Alcohol-Based Hand Sanitizer immediately before touching a patient.  This seems like simple, respectful behavior.

I would like to know how I can be assured that I will not have to be asking your staff to practice appropriate hand hygiene were I to continue using your facility for my own medical care and accompanying others for theirs.  I look forward to your response.

Ilene Corina, BCPA

Sunday, March 27, 2022

The Nurse


Any Nurse USA

I rarely, if ever comment on a medical injury case (an injury or death that is caused by the care received through the healthcare system).  I understand that people who work in healthcare are human, and mistakes are made.  I also understand the pain and suffering that goes along with the injury or loss of losing someone to the same people you trust to help.  But this case is getting so much attention, I would like to throw my two cents in for what its worth; recognizing I too, do not know the whole story.

Here is a short version of the story

This past year we have hailed healthcare workers as heroes for the care of people with the deadly virus and many leaving their own families to care for the loved ones of strangers.  Now, this breaking news of a situation that happened even before the pandemic, is coming to light. 

A nurse overrides all the safety measures in place to give a patient the wrong medication.  When the nurse gives the patient the wrong medication, the patient dies.  The nurse admits her mistake, is fired, loses her license, and is treated as a criminal and now, convicted of a crime, criminal negligent homicide.   She will be put in jail as are those convicted of crimes.

In my humble opinion, putting her in prison makes no sense.  She made a mistake; she admitted her mistake and the patient can’t come back.  Treating her as a criminal helps no one.  The patient’s family wanted justice and are entitled to something.  There may have been a financial payout, I hope they get some counseling, but is this nurse a criminal? When did the laws go into effect that a medical professional with no criminal history, has committed a crime by making a mistake?  Do they teach in nursing school that if a nurse is distracted, makes a mistake, and injures or kills someone they may be convicted of a crime and serve prison time?

We know that driving over the speed limit, texting while driving, drinking and driving are all wrong and can cause the death of someone, but who isn’t guilty of at least one of these things?   Its only when someone gets caught is there punishment and yes, they can be treated as a criminal if someone is killed during any of these dangerous acts while driving.

For the past twenty-five years  with Pulse Center for Patient Safety Education & Advocacy we have been teaching the public to be more prepared as a patient but there are things, like this incident that we can never teach people to prepare for.  There must be a certain amount of trust in the people who work in the system to care for us and our families.   So, what happened in horrible, but I question it being a crime.  It would be interesting to know how many nurses are willing to admit that they too have bypassed systems and why.  How many times the problem has been reported and ignored.

How much better it would be for this nurse to be an educator for other nurses since this case will probably go away quietly and in a few years it will happen again. Instead of ten years in jail, ten years of educating others. How many nurses across the nation have done the same thing, reported a problem and felt ignored?  Do they become a “whistleblower” or keep quiet for fear of losing their job?

The family needs to come out and talk about their pain, what it was like to lose a loved one this way.  Put a face on the medical mistake, but not in the court room.  Cases like this need to be talked about so others can learn.  I’m sure in a few years we will hear of another case, and another and many we won’t hear about because the media won’t pick them up.

There is no secret that healthcare workers often don’t follow the “rules”.  One way to easily know this is just by watching the lack of handwashing.  I am very conscious of handwashing because its is one of the simplest ways to know if a healthcare worker will follow policies and with lack of hand hygiene, I’m sure there are many other opportunities to cut corners, some are just more deadly than others.




Each year, in the United States alone, 7,000 to 9,000 people die as a result of a medication error.



Parents say Walgreens mistakenly injected them and their two kids with the Covid-19 vaccine instead of flu shot



Hospital medication error kills patient in Oregon



Devastated nurse committed suicide after she accidentally gave baby fatal overdose  

Saturday, March 12, 2022

March 14th Isn't Just Another Day

March 14th; Why it Matters

March 14th isn’t just another day for me.  Many people have anniversaries and birthdays worth remembering or celebrating. March 14th is a day I allow myself to feel sorry for myself.  But, as I have learned over the years, it is often the build up to that day that causes more anxiety, sadness or upset than the day itself.  Allowing myself time to be angry, depressed, or sad - with a limit, has been helpful to me.  I encourage other people to do that too instead of feeling guilty, for being sad or angry. 

Fighting our sadness or anger can cause buildup and resentment.  Allowing it to happen, without guilt or shame can be healthy and then thinking about being finished with negative feelings can bring us back to our old selves and be “done” and move on.

March 14th is one of those days for me that I always regret coming around.  It was many, many years ago, but the words said, and almost every movement I made is implanted in my brain.  This is believed to be because of the adrenaline that happens with sudden emotions.  

I was escorted into a room by the emergency room staff and behind closed doors I sat for what felt like hours.  Each time the doctor would come in and tell me they are working on him; I would suggest she leave and go back to caring for my son.  It didn’t occur to me that there was a team caring for him and she was the one sent to keep me updated.  Until finally, she came back and said there was “nothing else we could do”.  My son was dead.  It took a while to sink in and though I remember the gasps I heard from the people I love with me; it took me a long time to cry.  I had to see him, decide to donate what organs could be saved, and plan for – what now – there was no one to tell me what to do. 

As the days and months moved on, I had to figure out how a little boy, who had chronic ear infections, would get his tonsils removed and bleed for 8 days – bleed to death, and a body filled with infection went ignored by all the doctors I saw during that week.  Each of the 5 times in the week leading up to his death, I was in a different emergency room, everyone said he was fine. 

I sat numb in the weeks that followed his death thinking that I was right, and all those doctors were wrong.  To prove I was right, it cost my son his life.  I wondered why, in all the months that followed, no one asked me what went wrong.  What did they miss?  Would anyone learn?

If Michael survived because of what I know now, and I spoke up louder, insisted more that something was wrong, insisted that they bring him back to surgery and any one of the 5 doctors I took him to in that week saved him, there would be nothing to learn.  It would be how it’s supposed to be.  He would get better, and we would all go on with our lives.  We do not count the people who survive or prevent medical errors by speaking up.  Only the dead are counted and that often doesn’t work either.  Medical mistake was not on his death certificate.

As the years moved on, I committed myself to encouraging people to speak up for themselves or their loved ones. I began attending medical conferences in 1999 so I could hear the medical professionals talk to each other about safe patient care, medical errors, and injuries, caused by their mistakes or systems that failed them and us, the patient, and families. 

I will never forget the phone call of a woman who said her child was going in for a tonsillectomy.  She was nervous but wanted to ask me what she should know before taking her child for surgery.  Would I mind giving her advice.  It was when I realized that we could save lives by talking to each. What we, the people who live these tragedies can be doing.

When families experience an injury or a death caused by the healthcare system, it is hard to “blame” because we often don’t have the facts and there is no report written up as there is in a car accident.  Medical care is often as complex as driving with no driver training.  We must completely count on the expertise of the others on the road. 

Over the years I like to think of my activism turned advocate as a good thing.  I would like to think that in the 25 years with a nonprofit organization Pulse Center for Patient Safety Education & Advocacy based on educating the public, encourage the sharing of information and helping people learn to advocate for themselves and their loved ones, we are in a way the driver’s education we all know, and respect meant to help, support, and save lives. 

This week, the second week of March is Patient Safety Awareness Week on its 20th year - The IHI knows of the importance and many hospitals celebrate patient safety as well as healthcare quality organizations such as The Joint Commission.  Some even use this time to honor those lives lost, but still., you won’t find it on any calendar of awareness though I have tried for years to get it recognized. Awareness Months, Appreciation Weeks, National Days for Marketing | Crestline

So as March 14th comes and goes quietly for me, I can only hope that someone will speak up, speak out and another life will be saved.

Thursday, December 30, 2021

Call Only If It’s an Emergency

What's an Emergency?

The news reports are telling us lately that people are calling 911 when its not an emergency and tying up the emergency response teams who are needed for “real” emergencies.

But what is an emergency?  Don’t assume people know this. It is part of the disconnect between patient care and patient safety.

In 2010 I was accepted into the American Hospital Association/National Patient Safety Foundation Patient Safety Fellowship Program where I was trained for a year by experts in patient safety.  I was the first person from Long Island accepted into this program and only the second who did not work “in” healthcare.  I had to submit an Action Learning Project which I called a “Patient Safety Council,” now called "The Health Care Equality Project” and because I did not have a hospital where I worked to support me, I was sponsored by Nassau Suffolk Hospital Council, Northwell Health, and a grant from the Long Island Unitarian Universalist Fund. I will forever be grateful for that support.

My project was to bring groups of people together whom we called “vulnerable populations”, teach them about patient safety, and then ask them what its like to be them, when using the healthcare system.  Some of the groups we worked with were people with HIV/AIDS, people with physical disabilities, families and hospice workers, people who are transgender, non-English speaking community members, and young, homeless mothers living in shelters. Thirteen groups altogether.

We would work with each group to find out what the concerns were, and the obstacles to safe medical care.  The young mothers come to mind today because I was told by the house mother that at these shelters where we worked with them to discuss keeping their children’s medical records, medication lists and preparing for the medical visit, they also called an ambulance for non-emergency calls. The house mothers were concerned about the abuse of the system.  I didn’t believe in labeling it abuse when it was a matter of asking them what they think of when they think of “an emergency”.

Some considered it an emergency if their baby had a fever, sore throat, bloody nose or a cut.  They understood that a splinter was not an emergency as long as someone could remove it.  After learning of the disconnect in understanding what an emergency actually is, a paramedic and then a pediatrician spoke to the mothers, and we put together a policy to help them understand what an emergency actually is and isn’t.

Patient Safety starts with better communication.  Let’s all try to imagine where that breakdown might be. For more information on the Healthcare Equality Project visit  HealthCareEquality - Pulse Center for Patient Safety Education & Advocacy

We are still looking for groups and welcome an opportunity to hear from you if you have a group we can work with.

Wednesday, October 27, 2021

Handwashing Saves Lives

Why Won't They Wash? 

I sat in the doctor’s office in the chair while the patient sat on the paper covered table waiting for the doctor.  The doctor burst through the door in her usually perky voice and said “Hi, how are you today”.

“Not happy” I told her.  She stopped, turned to me, and asked “why”?

“Because” I told her, “No one here washes their hands”.   The woman earlier who took the patients blood pressure and stuck a pulse oximeter on the patient’s finger didn’t wash.  When I asked her about washing her hands, she showed me that there is no sink in the room, and said she washes her hands outside the room.  I watched her open the door in the lobby and again in the exam room.  She touched the computer and other things with still had no intention of washing her hands before touching the patient.  So, each time she touched the patient I wiped the patient’s skin down with antibacterial wipes.  The oximeter, which she pulled out of her pocket went back in after it left the patient’s finger.  I would have liked to see it wiped down before or after or both.

The doctor said she will absolutely use the antibacterial lotion in the room. She made no excuses and did not make light of my request.  When she went to get someone in to take the patient’s blood, I asked her to send someone who washes their hands.  She said she would and promised to inform all of them that they need to wash.

I’m guessing other patients are not reminding staff to wash.  I get they might forget; it might be inconvenient but there are germs in the doctor’s office. and out of respect, don’t you think medical staff should be cleaning their hands before touching a patient?  This was the second time in a week I was in that office, and I have never seen them use the antibacterial lotion in the room.  As a courtesy to the patient, I did not say anything in the past.  At another doctor’s office last week when I asked the staff to wash, she asked me “do you want me to change my gloves too?”  I told her yes.  She did.

I am not trying to be annoying, but I am concerned that medical staff are comfortable not washing.  The basic infection prevention tool for anyone and now in the medical office, where there are known germs, someone wants to touch a patient without washing first?  This is not only about the germs that can cause infection and illness but the lack of respect.  According to the Centers for Disease Control (CDC), on average, healthcare providers clean their hands less than half of the times they should. And one in 31 hospital patients has at least one healthcare-associated infection (HAI).[i]  

If the loss of human life doesn’t help you take this seriously, how about the cost. The overall direct cost of HAIs to hospitals ranges from US$28 billion to 45 billion[ii]   Germs don’t move themselves. Germs depend on people, the environment, and/or medical equipment to move in healthcare settings.[iii] 

Germs are found in the healthcare environment. Examples of environmental sources of germs include: Dry surfaces in patient care areas (e.g., bed rails, medical equipment, countertops, and tables)[iv]  

These days we know healthcare professionals are understaffed and overworked and may forget to wash their hands but its not OK and patients, their caregivers or advocates must speak up and help them remember.

Monday, September 13, 2021

The Letter

This is an actual letter sent to an urgent care facility. I believe that if we all sent letters that consisted of constructive comments to help improve care, maybe one day, these "little" issues will be improved enough so care will be improved.

The letter unedited:

This letter is being sent to share my recent experience at one of your urgent care facilities. It is intended to be informative and hopefully helpful to you in making improvements, by highlighting some areas which I believe need addressing. I do not intent to escalate this if you can share how changes will be made to improve the safety of your patients and compliance by staff.

I am a caregiver and professional patient advocate for a man who became ill over the weekend with what seemed like a chest cold. It was not getting better so I took him to your urgent care facility, which we chose because of distance, insurance, and most of all because we trusted the logo on the front of the facility that indicated it should be a trustworthy urgent care center.

When we arrived, we were told to stay back (the 6-foot marker) and the gentleman behind the desk asked why the patient was there. This, I thought, was a personal question that should not be shouted from six feet away. He then asked for the patient’s name and address. I stopped him and suggested that this is personal information: why does the patient need to yell it so the other person in the waiting room can hear? He asked for the insurance information and then continued with the check in.

I would probably stop there but another concern was that no one washed their hands — not the person who took his vitals, or did his x-ray, or the Physician’s Assistant who came to see him. Only the woman who did the EEG washed, because I asked her to. No one introduced themselves except the PA (very quietly after standing in the background observing).

The patient was asked to lie on a bed, shirtless, with no sheet or paper. using two pillows with no covers. I wiped them all down with my own cleaning supplies but have no idea if anyone else would have done the same.  

As I watched people come in and leave the room (Exam Room 1) I noticed they were sliding the door that was touched by each person (including a sick patient) with bare hands. With my own cleaning supplies, I washed down the door and the fingerprints, which were many.

When medical history was taken, we were asked for a list of medications and since he is on over twenty, we asked if the information could be found in a portal. We were told “no”: they are affiliated with a health system but cannot see information in its portal, they can only feed information into it. I retrieved another copy of the patient’s medication list and offered it to the PA who said they had gotten them off the portal and had the list.

While the patient got his x-ray, I stepped into the hallway and heard the conversation of a woman who came in just as we did earlier. She was asked for her information as we were. Though I was standing at least 10 feet away, I clearly heard that she was there for a bladder infection, her name, and her phone number as well as additional conversation about her need for a bathroom.

When we left, we received no discharge information, though I did ask for a business card. We were not told, until I called back later, that we can get such information off a portal. 

When we went to get the patient’s newly-prescribed medication from the pharmacy, the pharmacist came to the window to explain that the medication which was prescribed, mixed with a current medication, could “stop his heart”. The pharmacist said she called the doctor and explained that there is a problem mixing these medications, and suggested an alternative.

Though your website says that you provide “world class care” at over 150 locations nationwide, I would suggest you may want to start looking at one location at a time to review your standards and policies.

Here are some suggestions:

• Conversation with a patient at the desk should be private (or have the patient fill out forms). Ask if they need help (because many people can’t read or write.)

• Staff should be introducing themselves by name and title when arriving to see a patient.

• Staff should be washing their hands before putting on gloves. Antibacterial lotion is not enough and in this case was not used by anyone.

• Medications should be reviewed with the patient if a new one is being recommended, to be sure all medications are correct.

• The cot where patients will be sitting in the exam room should be clean and covered.

• Patient should be offered a gown for modesty or leave top on and not be told to “remove your shirt”. (In our case he sat in a chilly room, so I did not let him remove his shirt.)

• Patient should be asked in private if the family member or advocate should be there. (Some patients may not want a family member or friend there but are uncomfortable or unsafe saying so in front of them.)

• Patient and/or family member should be given paperwork or information on how to access the patient portal with information about the visit. This patient left with nothing and had never accessed the portal before.

Thank you for taking time to review this letter. I hope to hear from you that any changes suggested are worthy of review.


Ilene Corina, BCPA

President, Pulse Center for Patient Safety Education & Advocacy