Ilene Corina: A “Take-Charge” Leader and the Pulse of Patient Safety

In this Season 1 finale, we speak with Ilene Corina, a patient advocate with over 25 years of experience. Ilene shares her personal journey, which began with the tragic loss of her three-year-old son after a tonsillectomy due to medical errors. This heartbreaking experience motivated her to become an advocate for patient safety. She also highlights her work with various communities, including those with disabilities, transgender individuals, and homeless patients, shedding light on the biases and challenges they face within the healthcare system. Ilene emphasizes the importance of advocacy in ensuring patient safety, reducing medical errors, and improving communication between healthcare providers and patients.

Ilene discusses the training and certification process for patient advocates, including the board-certified patient advocate (BCPA) designation. She emphasizes the need for empathy, effective communication, and a focus on patient safety in advocate training. The episode touches on common medical errors, such as medication mix-ups and wrong-side surgeries, and Ilene provides valuable tips on how patients and their advocates can address these issues.

Transcript

Host

Hey, would you mind editing that out? Just let me know and I'll make a mark and I'll cut it out. There's no gotcha. I wanna make you and the cause look as good as possible. Like this, you know, so if there's anything where you're like, I just botched that, let me do that again, just let me know, all right? Okay, so Eileen Carina, thank you so much for being on the Patient Advocacy Now podcast. I'm really excited to kind of go over so much with you. How you doing today?

Ilene Corina, BCPA

I'm doing great, I'm so glad to be here, thank you.

Host

Thank you. You have a really interesting personal journey that brought you into this world. Would you mind kind of sharing that and going over that so that we kind of get a sense of where you're coming from?

Ilene Corina, BCPA

Sure, many years ago, over 30 years ago now, I had a son who had surgery and after his surgery he was bleeding for a week.

And during that week, it was a tonsillectomy. I brought him to four, five different doctors. I don't even remember now. I've said it so many times though. And each doctor in the emergency room said, don't worry, he's fine. Even the surgeon said, don't worry, he's fine. And eight days later, he died from blood loss and infection, his body was full of infection. So that was very devastating. Obviously he was my only child at the time, but what...

Host

How old is he? Wow.

Ilene Corina, BCPA

He was almost three. He was almost three. And what was really concerning me is not just that so many people left me as friends and we were kind of struggling because people couldn't believe it in the trusted healthcare system.

was something people wanted to trust but nobody was asking me what I could have done different and what could have been done different. Nobody talked to me about it. So then I had a very severely premature child. I had a healthy birth after that and then a very severely premature child who was born at just 23 weeks instead of the normal 40 weeks. And thank goodness for the wonderful medical team. He did fine. He's doing fine. He's 30 years old and he's a perfectly healthy young man.

as my other son is also. So I like to say I saw the worst of health care but I also saw the best of health care.

And throughout that time I was still very frustrated that the bad things were happening. I knew bad things were happening and nobody was asking me what I could have done different or asking other people what they could have done different because I started talking about my son and his story and people were sharing their experiences. And there were a lot of bad experiences out there.

In 1999, I went to my first medical conference, a patient safety conference, and that's the first time I heard healthcare professionals not only talk about patient safety medical errors but also their loss of family members because of medical errors and poor planning. I mean, there's so many different reasons why their own family members were not safe in the healthcare system.

Ilene Corina, BCPA

and more studies I read, the more I realized that health care professionals were talking to each other.

and completely leaving the public out of how to stay safe in the health care system. So I started bringing that information to the public and talking about what I was learning at these conferences. And then I was invited to be part of these organizations, these medical organizations, the National Patient Safety Foundation, the Joint Commission. I was on those boards for many years and was accepted as a voice of patient safety from the patient's perspective and the family's perspective.

Host

Mm-hmm.

Ilene Corina, BCPA

active.

Host

Yeah, I'm so sorry for your loss. I know it was a while ago, but it's, it's the fact that you talk about it so much must make it still feel so recent.

Ilene Corina, BCPA

I don't know.

about recent, but it makes it very real. Because, you know, it cost me my job, it cost me my marriage, it's a very, it's a strong passion that he was my son then, he's my son now. And I don't want the, I don't want to just move on. I never wanted to just move on. It was not an option. I had to protect my other children. I had to let people know that this was something, you know, it was something that was happening that the public wasn't

and we needed to be part of it. The public needs to be part of it.

Host

I think you mentioned something that's really interesting that we neglect to talk about so much in the healthcare space. When tragedy like this hits, you lost your job, right? It cost you your marriage. And you mentioned earlier, a lot of friendships also went away. Why does that happen? What does that look like?

Ilene Corina, BCPA

Well, that's a new topic. Thank you. I think it happens in my case because it wasn't a choice that I was going to make. It was a choice that was made for me that I was going to continue talking about him. And the more people avoided talking about my son, the more I got passionate about the need to talk about him.

My job first my job was very secure and supported my work in patient advocacy and and working at getting legislation passed that was early on we got legislation passed and I traveled to Conferences I took a lot of time off from work, but then I wanted to move on I was invited to work at a health system to do some research under a grant and I left my My job a civil service job. That was a very good job

kind of work.

And when I took this grant that I worked for two years on patient safety, it didn't occur to me that I would have to find a job after two years. And I didn't know how to run a nonprofit. I didn't know how to run a business. I didn't know how to do any of this. So I was left straggling through life with trying to figure out what my next steps would be because it wasn't an option to walk away from patient safety and education.

Host

It's become part of your identity for sure. Yeah.

Ilene Corina, BCPA

Oh, absolutely. Absolutely. It's not something that you plan, it's just something that it just happens and it was working that people would listen but not make the changes. We're just, we're grassroots.

Host

No.

Host

Did you ever find out what could have been done differently for your son?

Ilene Corina, BCPA

Oh, it.

it became pretty obvious that if somebody would have put him back into surgery, he probably could have been saved. The best thing that happened to me in the 25 years that I'm doing this was when a mother called and said, my child's going for tonsillectomy, what should I watch out for? What do I need to know? And that to me meant I reached the audience I want to reach. They're being proactive. And that was very important for me. To have somebody say, I hear you.

Host

Well.

Ilene Corina, BCPA

to learn from that. Of course, I never heard back from them, but it was important that it made a difference. It could have made a difference. So there was many things that could have been done differently, and those are the things that we hear over and over again for other people, that if there was somebody like me...

that would have listened to me back then, he might be alive. But it's impossible to measure positive outcomes, and that's been our problem for all these years, is when something goes right, how do you measure that and prove that it went right? So if somebody goes and gets a correct diagnosis, you can't really measure that because that's the way it's supposed to be, but if somebody gets the wrong diagnosis, that's what's being measured. And we need to figure out

Host

Mm-hmm.

Host

Yeah.

Host

Wow, what a great point. That's the uphill battle of showing the efficacy of patient advocacy is that when things go right, no one notices. You don't get a curtain call when someone's healthy.

Ilene Corina, BCPA

Yeah.

Ilene Corina, BCPA

Right, so we have on our website a page called One is a Number and that comes from a hospital executive that said to me about funding, if you want funding then you have to prove that the work that you're doing is working. And I said, well, if it's, you know, he said by the numbers and I said, well, if it was your child that survives or dies, is one a number?

And I started a website, on the website, a page called One is a Number with the statistics of, and easy access to statistics. So people could look it up and see how many medication errors, how many people die from infection, and we have easy access to all that research.

Host

Yeah, and it's such an emerging part of the healthcare system, even doing something like

I mean, you couldn't do a double blind, but like doing something where you have a controlled study of maybe a small sample, pop, small population sample of people who have advocates over 10 years versus people who don't. I mean, it's just so new and, and the types of advocates that are out there are diverse. So it's, I mean, it's almost impossible right now to do something like that.

Ilene Corina, BCPA

It is, and trust me, we've thought about it many times, and we try to figure out how we can do it, but we're a volunteer organization, so we don't have, you know, we don't even have an executive director, we don't have a, you know, people to do this kind of research.

Host

Yeah.

Ilene Corina, BCPA

We have a lot of ideas and a lot of written material, and over the years we've done, we do three programs a month right now, all related to educating the public. So our audience is the people who want to be patient advocates or caregivers for their family. We start at the very grassroots level. People who are thinking about becoming patient advocates, we support their journey through. And of course, people who are long-time patient advocates, because then we wanna match them up

Host

Mm-hmm.

Ilene Corina, BCPA

What would the people who want to understand what a patient advocate does?

Host

Well, I think that's a, that's a good segue to understanding what, you know, you define a patient advocate does, cause it does have different definitions from different depending on who you ask. If someone has a nursing background, it has a different, you know, application than someone who might have more experience in the billing space. So for you and maybe your specific organization pulse, right? What is a patient advocate? What do they do?

Ilene Corina, BCPA

Our focus is very specific on patient safety, on safe care policy standards when you go into the healthcare system. So we look at things like misdiagnosis or medication safety and hand washing, things

to safe care. And we also focus on the family. We call our advocacy family-centered patient advocacy. And not telling a person who calls, and I take the calls, but if a person calls, I'm not going to tell them, here's what you need to do. We encourage their family and friends to become their support person. And then we can tell them, here's what you can do for the patient. A patient needs to just get better and be concerned about themselves.

hear things and may feel vulnerable. So we want them to just take care of themselves and build a support system around them, whether it's our volunteers or a team we can build for them or they just give us some names of people to contact for them or they send people in their support team to us that we can work with to help them. And it could be a series of things. It could be the insurance if that's what it is, but our focus is on safe care and that could

sure your insurance is paying for your your care or you may not go for it.

Host

Right. So, there's so many different little avenues even within the context of safety and you're a volunteer organization. I just wanna get a little bit grounded in what this looks like. So, do people find your organization and they call you and a lot of the assistance is done over the phone or virtually do people actually go into the hospital sometimes?

Ilene Corina, BCPA

Well, my very favorite thing before COVID was...

to go into the hospital, with people to the doctor's office. And I called out my training because that's where the problems happen. And the standards and policies and rules are all made in the boardroom, but errors happen at the bedside. So I could be at a medical conference or talking to someone in healthcare and say, all our staff wash their hands and they do what they're told to do. And I've said many times to people, take off your tie and go sit at the bedside and shift

Host

Yeah.

Ilene Corina, BCPA

and go see what really happens in your hospital. Because everybody wants to say that their hospital's doing, their staff are doing what they're supposed to be doing. And I'm not blaming staff. There's so many different reasons. They may not even realize that they're not doing it. And that's why we, the patient, and our families need to speak up about things like infection prevention and control and diagnostic and safe medication use. But the people who work in healthcare, the leadership.

don't see what happens at the bedside. So for many years we did have our volunteers and myself going into the hospital. And I would get on a plane in a heartbeat and travel around the country to be with somebody through their hip surgery. We worked a lot with the transgender community and watched the bias that happens. Or a Hispanic young 17 year old Hispanic mother who just had a baby and watch how she's treated in the hospital. If you don't see it, it's really hard to believe

Host

Wow.

Ilene Corina, BCPA

these days.

Host

Would you mind telling me more about that? Because I mean, I don't have those firsthand experiences. What do those biases look like?

Ilene Corina, BCPA

Well, oh, there's so many stories. We have a...

Host

That's what I love to hear because I think it puts a human face on this issue. You know what I mean?

Ilene Corina, BCPA

Yeah, and I get my privilege that I'm a white middle class woman and I've learned that also, that I could talk to a nurse very differently than a 17 year old or somebody who's very elderly, or a family member who's stressed because their loved one has dementia. But there was actually, I was with somebody who's transgender in a hospital where the whole floor was people who were transgender. And the...

Host

A whole floor?

Ilene Corina, BCPA

The whole floor people getting transgender surgery, the transition surgery. The floor in the hospital, yeah, there were patients, there were the patients. And I watched the volunteers walk past the room with the magazines and newspapers, and I said, could you come in? And she ran away from me. And I said to the nurse, what was that about? And she said, oh, they're afraid of the patients.

Host

Oh, okay. Okay. It was a surgical. Got it. Got it. Gotcha.

Ilene Corina, BCPA

And I said, what? I didn't even understand that. And she said, yeah, and they're all the wives of the board members, so we can't say anything about it. And that's acceptable. To this day, I tell that story because it's just so unbelievable that a hospital, it wasn't this state, it wasn't local, but I couldn't believe that that happened. And of course the patient saw this, and that was upsetting to the patient to think that this was allowed.

Host

Wow.

Ilene Corina, BCPA

People who are, have disabilities, they are definitely, there's a bias against people with disabilities. We taught a course to leadership in a hospital on working with people who have disabilities. And the leadership, one of the women in the leadership said, I can't believe that, you know, we're doing this. They take up so much time, we just don't have the time to take care of them.

And the nurse manager who was with me said, oh God, what are you talking about? Don't say that, don't say that. And I said, please say it. Let's get it out. This is the elephant room. We need to talk about that. If they're taking up so much time, then something needs to be done differently. And in another hospital, somebody said to me, in a room full of people, we make sure our nurses spend extra time with people who are in wheelchairs, who have disabilities, we make sure they spend extra time with them. And I said,

Host

Yeah.

Ilene Corina, BCPA

hiring more nurses or you're just telling each nurse to work harder.

What do you mean you're telling them they're taking care of them? They're obviously stressed out if you're not giving them more support. So it's really, you know, we did this called the Health Care Quality Project. It was a one-year project that lasted over 10 years, and I still love doing this. We work with people with HIV, and we talked about them having one of the questions that came up is about their, having their health care proxy. And we do something called patient activation through community conversations.

Host

Yeah.

Ilene Corina, BCPA

what they want to talk about anonymously. And four people checked off the healthcare proxy. Nobody wanted to talk about it. 13 people in the room, and I said, look, four people want to talk about it, let's talk about it. And the concern was, how do we choose somebody if we don't want our family to know that we're HIV positive?

Host

And just for people who might not know, a healthcare proxy is someone who looks over your medical care if you are incapable of doing it yourself.

Ilene Corina, BCPA

Exactly.

Yes, yes, exactly. So they talk for you if you can't speak for yourself. So they have to understand, they have to know your background and your information. And I didn't know the answer to that. So I left it to them to discuss. It became a good conversation. But then I called the community groups I knew that were support groups for people with HIV and said, look, could you guys talk about this? Because it seems to be a pretty heavy topic. And I left it with the support groups to continue the conversation.

You know, those are some of the some of the stories we have, you know Of course on the website lots of stories and lots of experiences people who are day laborers and how they're treated Because they don't speak the language You know, it could be any one of us because we feel very vulnerable when we go into the hospital health care system the black community You know are accused of being drug seekers a woman who was the ran the health system that she went into the emergency room

It was her health system, a black woman, and she tells a story about how she was accused of being a drug seeker because she was wearing a sweatshirt and jeans and dressed down and they didn't recognize her, but she

Host

Wow.

Host

So there's no sensitivity training, there's no equity kind of approach to stuff like that.

Ilene Corina, BCPA

Well now it's pretty popular to have this kind of training, but nobody believes, I think, that it's that.

Host

It's very new, yeah.

Ilene Corina, BCPA

It is new and I think people want to say, it's not me, it's not me, but we have to admit that we have a little bias in us. If we're not going to admit it, then we're not going to be open to this conversation. And when I started this, I really, I was naive. I don't know about bias, but I was very naive. And I said some stupid things, but I went to my colleagues and said, is this a stupid thing to say? And I trusted that they would correct me because I didn't understand.

Host

Uh huh.

Ilene Corina, BCPA

and wanted to understand.

Host

Well, that's a testament to your own humility. I think that's one thing that the healthcare system could probably use a little bit more of is that sense of humility and that sense of willingness to look at what's wrong for sure.

Ilene Corina, BCPA

Yeah, and being an advocate for people who are, or a support person for people who are vulnerable like that. Somebody who's homeless, I was with somebody who was homeless and the social worker asked me to step out of the room to talk to her. And I said, no, no, you need to talk here. And if he wants me to step out and talk to you, that's one thing, but I'm not going to talk without him here. I'm not going to talk about him outside the room. So yeah, I mean, it was, I understood that she wanted to discuss his case and didn't want to embarrass him.

Host

Ha!

Ilene Corina, BCPA

He knows what's happening. He's not dumb. He's not, you know, he was homeless. It doesn't make him a bad person or lower IQ level. He just was homeless and they were very disrespectful for that without even realizing. I think she was trying to be respectful in that case.

Host

Right, but it was misguided, right, I hear you.

Ilene Corina, BCPA

It was really was misguided and I pull sometimes I pull nurses aside and explain to them. It's very helpful for people who are transitioning. It was very helpful to be when they didn't understand what do we call this person is this a man or woman. What do we and I was able to pull people aside and explain do some education. So and you know, the young mother who is who had a baby and was she was a homeless young mother.

treat her and they didn't know what to say so I was able to be a buffer and I don't mind that it's when they come out and say things that are not very nice and don't recognize so I'd like to think that there is training in this we do training our advocate training is covers us a lot because we do have the videos and we do have the real stories and experiences so we do this kind of training

Host

Yeah.

Host

What kind of training is involved, since you brought it up, in becoming a patient support person or an advocate?

Ilene Corina, BCPA

Well, to become board certified patient advocate, and I can't speak for everyone, but there is a test. It's a few hour test and it's a lot of studying. It could be very stressful to take this test, people.

Host

And then you get the designation of BCPA, board certified. Got it.

Ilene Corina, BCPA

Exactly, exactly. Yeah, we do our Pulse training, our family advocate training. We give certificates that people have taken our training and it's on safety and it's on, it's not quizzes like medical information, Medicare, we don't need to know that. Most of ours is on empathy, on communication, and on patient safety in reducing falls, infections, communication. We focus on the day-to-day

a support person and a patient, and the healthcare team, making sure that's working.

Host

What are the, some of the kind of typical egregious errors you, you've seen over the last 25 years bedside when it comes to safety?

Ilene Corina, BCPA

Wow, that's a great question because I still am amazed when I was sitting with a patient and her name was, I'll say Pat, and I was sitting with her and I heard the nurse at the next bed saying, Pat, Pat, wake up.

I got to give you medication." And I thought, oh my God, I'm witnessing this myself. And I used the last name, and she was at the wrong patient. She was about to give the wrong patient a medication. So that's something you hear about, but you don't always witness. That happened twice, very similar. Another time, they're supposed to always check the name and birthday. Some people get annoyed at that, but it's because they could take the wrong patient. And I've seen people take the wrong patient. I had a patient who was going in for a hernia.

Host

Right.

Ilene Corina, BCPA

surgery and the wife came running to me and she said he wants to do the surgery on the left side and it's the right side. I don't even know now. I don't remember. So I had to go talk to the doctor because I was just getting there right before the surgery and he was going to do the surgery on the wrong side. So these things, these are things you hear about and they may not be deadly, but I did have a woman who was quadriplegic. The agency that she was involved with asked me to visit her. A few times I visited her.

Host

Wow.

Ilene Corina, BCPA

the treating her terribly. She was a little tough, rough around the edges and everybody knew that but she said they're gonna drop me the way they were lifting her was inappropriate. It was terrible and and I went to visit her maybe four times and then I got a phone call that she was dropped and she died. She hit her head and she died and she would not let me report the way they were treating her to the senior leadership. I couldn't go without her permission and you never expect that to happen. Usually I cry when I tell that story.

Host

Oh my gosh.

Ilene Corina, BCPA

because the guilt that I have that she told me how dangerous it was there for her and she even had an aide coming in her aide was her friend not getting paid to be with her because she was in the hospital she was terrified for her safety and sure enough I got the phone call late at night that she that she died after hitting her head and there was nothing

Host

I've heard this many times where people, do you believe it, maybe is it a sense of embarrassment or they don't want to get people in trouble? Because there is this thing where people don't want to speak up. What do you think the reasoning behind that is?

Ilene Corina, BCPA

Well, because if you're in the hospital and you're almost naked and you're counting on that person to get you a bedpan or you write medication, you don't want to speak up. And

Host

You don't want to piss them off, right?

Ilene Corina, BCPA

You want your food, you want to make sure that your lunch tray is on time, and you're very vulnerable. So that's why it's really important for the family and friends. And we call it be respectful but assertive, because we give out, you know, a big joke that we do is if they haven't washed their hands, it's not a joke, it's serious, but

Host

Yeah.

Host

Sure.

Ilene Corina, BCPA

The standard response is when you ask somebody, could you please wash your hands before touching my mother or my sister? They'll say I did already. Of course they're going to say I did already. And we'll say, would you do it again for Twizzler? And I carry Twizzlers or Snickers or chocolates or something.

Host

You're so brilliant. Oh my God, what a great response. What a great response. You just defused all the tension. You gave a nurse who's overworked a little bit of a sugary treat. And I mean, that's so brilliant. We need more of that. Oh my God, I leave. This conversation just for that one tip alone, that's genius. I'm gonna use it with my kids.

Ilene Corina, BCPA

Exactly.

Ilene Corina, BCPA

And they'll always say, absolutely.

Ilene Corina, BCPA

I got my cups that say thank you for washing your hands. Take a Twizzler as a thank you. So yeah, we make sure there's always candy in the room for the nurses because then they come in the room. A lot of people bring the candy or cookies to the nurse's station, but we want wrapped candies in the patient's room so you get this trail of nurses and aides always in the nurse's room.

Host

Hahaha

Host

Ah, another great tip, another great tip.

Ilene Corina, BCPA

Yeah, so, you know, we have a lot of tips like that. But you want to, you know, after one person, after the first time I went with a patient, she washed, she got mad at me because I have wipes and I wipe down the patient's arm rests and whatever they're going to touch.

The next time we went there, we saw her, the patient was getting some testing, she washed everything down. She said, I remember you. And she had this really bad attitude. And so she washed everything down. And I thanked her. And as we left, I left a $1 lottery ticket on her keyboard. And her whole body, her eyes welled up, her whole body changed. Even the patient said, oh my God, what a change in her. You could just tell the appreciation after she was really nasty to me. You know, I washed everything down.

Host

Yeah.

Ilene Corina, BCPA

But I wanted to thank her because she did her job and she maybe even went above and beyond and I appreciated her So a little $1 lottery ticket went a very long way and I carry them with me all the time

Host

I think what's so inspiring about your approach is there are problems in the health care system. You're seeing the problems. You're being assertive, but you're doing it with such grace and such kindness in a way where people feel like you can be on their side and on the patient's side. And we need more of that, you know, where you don't feel like people are pointing fingers. You feel like, look, I want to be part of the solution.

Ilene Corina, BCPA

Yeah, and a lot of people talk about visiting hours and I remind people that visiting hours are very often for people who are annoying, that they want to kick you out. But I've never been asked to leave. I've been given a cut to sleep on when visiting hours are over because I am there to make their job easier, to make sure things go well. If I do see a mistake, I bring it to their attention and thank them for fixing it. I do not want to upset or aggravate people who...

in this job for making a living like many people. I don't believe people are purposely mean or sloppy, but I do believe that we as a society entering the health care system need to be better prepared. That's the Take Charge campaign that we have going. It's Five Steps for Safer Health Care. It is what the public needs to do before they go into the health care system. And it's something like the health care proxy we just talked

When you go into surgery or in the emergency room, they're gonna ask you who is your healthcare proxy.

Host

Mm-hmm.

Ilene Corina, BCPA

And that's not the time to figure it out or make the decision. We need to do that ahead of time. Many times I've been asked to be someone's health care proxy because they were unprepared and I don't want to do it. I wait till, you know, I had the conversation before and after that I'm done after the surgery. But, you know, your own list of medications, people go into the doctor and say, I forgot what medications I'm on. That's not okay. That's not the way we make the best use of our time and their time, even your symptoms.

Host

Yeah.

Host

Bye.

Ilene Corina, BCPA

back is killing me is not going to help a doctor figure out your back problem. We want people to be prepared to become a patient if they're going to enter the healthcare system just like when you get on an airplane you prepare before the airplane takes off you know all the safety features you don't buckle up when the car is about to crash you buckle up before just in case and we want people to be prepared and more more ready to be patients when they go in the hospital.

Host

Yeah.

Host

And so is Pulse, which is the organization you founded, right, Pulse? So is Pulse kind of in that spirit promoting healthcare literacy as it's one of its primary goals, or is it about getting actual patient support, physical bodies, you know, on the line or in the hospital, or is it a mixture of both?

Ilene Corina, BCPA

Yes. Yes.

Ilene Corina, BCPA

Well, I don't like the term literacy, I'll be honest with you. Health literacy is putting the responsibility on the patient and the family. Communication is what we focus on. So my job earlier was in the post office. For 20 years I worked in the post office and I've never found a doctor that knows the difference between certified mail and registered mail.

Host

Okay.

Host

Okay.

Ilene Corina, BCPA

That doesn't make them postal illiterate, right? That's not postal illiteracy. It was my job to explain to them. So communication between patient and providers is what we work on. And we don't, a lot of advocates.

Host

Mm-hmm.

Ilene Corina, BCPA

have HIPAA forms signed and want information to the patient's background and their information. We don't do that. We don't do anything without the patient. So the communication that might happen if I'm sitting with a patient in the doctor's office and I see the patient is not getting it, not understanding it, and the doctor explains it three times, then you want to make sure that go give me somebody else who's going to explain it. I'm not going to try to explain it. If it's their procedure and what they're going to do, I might say, do you have a video? Do you have

Host

Right.

Ilene Corina, BCPA

some literature we could read, but if my patient's not getting it, I'm not going to try to explain it to them because it's not my responsibility.

Host

So a lot of the goal there is to empower the patient to make the right decisions for themselves, it sounds like.

Ilene Corina, BCPA

And it could be that the advocate is helping, the family members could be helping, because I've been there with family members. I'll go for their diagnosis with the whole family. But when you see the families looking like, I don't know what they're talking about, then it's up to the advocate or the support person to speak up and say, look, they're not getting it. Is there somebody else who might have more time to explain this? I have a phone number here. I'm going to go call a doctor because the patient just told me today, I don't even remember what the doctor said.

So she gave me the number, permission to call the doctor and see if I could design it a little better and then the doctor could call the patient back because I'm not going to be the one to explain it. I might understand it so I can have a conversation, but I can't start explaining to patients. I'm not a medical person and I shouldn't use that as an advocate. I shouldn't be doing that.

Host

Right.

Host

Yeah. When do you feel like is the right time to get an advocate involved? Is it only when you get sick or is it, do you kind of wish people got started with this kind of journey a little bit earlier?

Ilene Corina, BCPA

Well, the Take Charge campaign, which is what we're really focusing on now, is to choose somebody now. During COVID, I called my mother and said, let's go through your medications on Zoom. We did it on Zoom. So people could be partnering up now early on. Like a health care proxy, we want people to choose early and have their advocate and not just have an advocate, but be an advocate. Who could you support if you know somebody is not feeling well? Or it might go into the hospital or go to the doctor.

Host

Mm-hmm.

Ilene Corina, BCPA

Can you do more than just drive? Could you go into the doctor's office? We also do something called remote advocacy now, where I could be right now listening to a patient in the hospital on my phone and leave the phone line open so I could be listening in when the nurse comes in. Recently, when the nurse came in and said to the patient, she gave the patient three o'clock in the morning her pain medication. When the patient woke up in the morning, she said, I didn't get my pain medication. I said, yes, you did. She was there three o'clock in the morning.

Host

Mm-hmm.

Ilene Corina, BCPA

And then during discharge, because this was during COVID, the nurse was saying, or I don't know if it was nurse or doctor, was saying, we're going to send you home with pain medication. And the patient said, OK. And I said through the phone, is it an opioid? Because she does not want to take opioids. She wants to stick with Tylenol, she told me before surgery. And the doctor said, yeah, it would be an opioid. So now, you know, opioids is something I believe is a media term.

or medical term, it's not a patient term. It's not something used for patients. It's something that we hear about after the addiction and after the problems. So we have to say an opioid, if this is what you're giving a patient, you're giving them an opioid and not try to twist that around. Right, right, because you're talking about people are addicted to opioids. Well, what's an opioid? I'm taking an oxygor.

Host

Yeah. Just to have clarity, just to have some clarity there. Yeah.

Host

I didn't even know I was taking them, I thought I was taking pain medication.

Ilene Corina, BCPA

Exactly, oxycodone. I'm not taking opioids. I'm taking oxycodone and Vicodin. Right? I mean, I actually experienced that myself. Early on when this all started, I started saying, I've never taken opioids. I took Vicodin though. So, you know, we don't know.

Host

Right?

Host

Well, since you've been part of it for so long, can you tell me a little bit about why there was a board created for certification for patient advocates and what the goal is in kind of giving people this BCPA kind of identification?

Ilene Corina, BCPA

Well, I remember when it was started many years ago. I was asked to be involved. It wasn't something that I believed in at the time that I wanted to put my time into. But it does make it structured. If somebody wants to use somebody who's board certified, that's a choice. It means that they pass a test. It's not that different than using a doctor who is, you know, some are really good and some aren't really good. So does it make somebody really good? No, it keeps standards.

you set standards, but if they do something inappropriate, what is the process to what is the, what are they doing? Right, right. I don't think that's ready yet. And so we know not to use that person if you're not happy with that person. What

Host

Like disciplinary, right? What's?

Host

becomes a reputation thing more than anything. Yeah.

Ilene Corina, BCPA

Right, right. So it's not a bad thing. I'm glad it's out there. I'm board certified myself. I'm glad I am. It keeps me with the people who are and want to keep up their certification. And it is a certain amount, certain standards are set for people who are, but it really doesn't make somebody better than someone else. Because again, we believe family members could be the best advocate for a patient. So, but if you wanted to start a business, that might be

Host

Yeah.

Ilene Corina, BCPA

someday a requirement to be board certified. I don't know, but it is.

Host

Right. It's an emerging field. So yeah, for sure. What, uh, if you, if you feel like you have a calling to be an advocate for people outside of your immediate circle, outside of your friends or family, what do you think makes someone a good advocate versus someone who it might not be the right field for them to get into?

Ilene Corina, BCPA

Well, it depends what kind of advocate they want to be. If they've done it with friends and family, and usually that's what I find happens, is I was my, you know, somebody might say I was my mother's advocate and then she died and I learned all this, and I was really good at it, now what do I do with this? Most of the people, that's who I hear from, I encourage them to let people know that they're willing to go to the doctor with others. I encourage them to start without any kind of pay, build up their reputation, or very minimal amount of pay.

Host

Yeah. Right.

Ilene Corina, BCPA

Not go not drive patients. I don't let anybody in the car because it's a whole insurance piece You know and be very careful not to give advice not to push medical advice set their own standards Have a written policy for themselves treat themselves as a business So they can start their reputation and never never stray from it if I

accidentally gives somebody advice, I am so aware of it because we just don't do that. We do share our policies to share what has worked for you. This is what's worked for me. The Twizzlers work for me. That's what I say. You could choose if you want to use it, use it, but I'm not telling you to do it. So we want to be really careful of how we...

Host

Right.

Host

Mm-hmm.

Host

Right.

Ilene Corina, BCPA

have conversations about health care. And our focus is not on people's health. That's very important also. If you don't eat right, you don't exercise, you take drugs, it's your business. I'm not going to tell you to do that. I'm going to encourage you to tell your doctor and make sure that you share that information with your doctor. But I'm not going to be the one to tell you how to diet, how to eat right, how much exercise. That's between you and your medical team.

So that's also a very big piece of what we do. We don't give medical advice. And some nurses and doctors may do that who are patient advocates. You want to be careful.

Host

Right. Well, Eileen, thank you so much for sharing this kind of infinite well of wisdom. I feel like I'm just scratching the surface we could talk for days. Where is a good place people can go to learn more about your program and more about this whole cause?

Ilene Corina, BCPA

Well, PulseCenterForPatientSafety.org is our website. It's a long one, but it's PulseCenterForPatientSafety.org. And if they go to programs, they could see the three programs a month, or I think it's under events, where all three of our programs, we have.

All our programs are related to advocates and caregivers and patients come together and learn together so we don't turn anyone away. Two a month do have CEs for board certified patient advocates. One is a discussion group, open discussion group for topics people bring. One is a small group discussion. We give them a question of the month and people go into small breakouts. And then ACE's Advocate Collaborative Educational Series is a speaker.

and then case studies where again people interact at the end of that one. So there's three different types. We also have some speakers throughout the month and events and they're all in the evening and they're all on zoom and they're all free.

Host

Fantastic. God bless you for the work you're doing. Please keep it up. Thank you so much for being a light in this kind of very thick and dark space that it gets to be for so many people.

Ilene Corina, BCPA

Well thank you so much for doing this, I appreciate it.