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Keynote: The Patient Advocacy Revolution with Erica Olenski

Erica Olenski: (Intro) That fear actually paralyzed us from caring for each other as human beings in that experience, because we, out of fear of HIPAA, don't acknowledge the human experience or humanity of the people that we're interacting with.

Bill Russell: My name is Bill Russell. I'm a former CIO for a 16 hospital system and creator of This Week Health, where we are dedicated to transforming healthcare one connection at a time. Our keynote show is designed to share conference level value with you every week.

Now, let's jump right into the episode.

(Main) Hey, it's keynote and today we're joined by Erica Olenski, VP at Finn Partners. Pr, Iron Man participant and caregiver, and today actually board certified patient Advocate. So we'll talk a little bit about that as well. Erica, welcome to the show.

Erica Olenski: Thank you so much, Bill. It's an honor to be here.

Erica Olenski: I was a competitive swimmer growing up, which I feel like is a prerequisite for some of us in the sport these days. Maybe not a prerequisite, but I've been in the, extreme endurance space for a long time. Grew up swimming competitively and then picked up running, early adulthood when a pool was a little harder to access.

Bill Russell: Wow. I've had friends who have done Iron Man competitions. I said, what's the hardest part? They said, oh, far and away's the swimming.

Like they're, when they do those and they go out into ocean or wherever they happen to be swimming. They're like, yeah, you could drown. Yeah. I'm like, serious. Seriously? It's only a couple miles. They're like, and your biking is, really long distance. They're like no.

The swimming is the most dangerous part.

Bill Russell: Well, we are catching you after a weekend of being in, the hospital. So this is, yeah. Fresh in your mind. I was going to, ask you to give us that story from like day one. But you choose day one or just a weekend story. It's just an ongoing, part of your life.

And unfortunately, we, in the last few months received some really unfortunate prognosis. Uh. A really unfortunate prognosis around his disease. And so we've been trying some alternative things and thinking outside the box because we've exhausted the standard of care. And this weekend, what really we've not had any complications, which has been remarkable.

And the MRIs we've been doing on a routine basis have all showed some partial response, which is also statistically significant. Because his diagnosis typically would progress pretty aggressively and not respond to treatment. So that was a very pleasant surprise. So after, doing spring baseball and we had a baseball game on Saturday actually he came home and had a really long nap and woke up, had some dinner, and then sat on the couch and started crying from a headache.

And, um. And so, we were a little concerned about progression of the disease. And so that was really traumatizing on its own traumatizing moment to sit there and wonder what we might be facing clinically. But thankfully we wound up getting into the ER. They were able to do a CT scan and confirmed that intracranial pressure was not a problem, which is the big

kind of question mark that we were facing around a headache and we were able to get him a blood transfusion and he's bouncing back and on his way home, hopefully today.

Bill Russell: thanks for sharing that story. How often have you been to that same hospital over the last couple of years?

It could be a IV start, it could be losing your hair. It could be a overnight stay in the hospital. And so the overnight stay in the hospital is this little yellow bead. And I think we probably have somewhere in the ballpark of three to 400 of those.

Bill Russell: Oh my

Erica Olenski: gosh, over the last six years.

Bill Russell: you know, obviously we focus a lot on technology here.

I love the fact that we're really talking about the human side of the experience and the interaction. Do they know you? Like when you walk in the front door, do they say, Erica, welcome. It's, It's, you know, what can we do?

Erica Olenski: It's the opposite. It's the opposite. I walk in there and they say, hi, please hand me your id, which I don't know why I find infuriating.

Bill Russell: That doesn't make sense to me because there's so many places that I'm shocked now where I show up and they say, bill, how you doing? It's great to see you. Oh, we see that you're this, you're that you're all these things. It seems like we have that wired in a lot of different places in our culture.

Erica Olenski: Yeah, we don't have that wired in healthcare. I think a large part, HIPAA has done a lot of really good things in the time that it's been implemented, but it's, I think, one area that's induced so much fear in people because they're afraid of overstepping confidentiality, but that fear instead.

The clinical teams are so afraid of exposing more that they know about somebody than. They would otherwise, and I just believe that's really impeding our progress as an industry when it comes to the experience of care.

Bill Russell: What would you blow up and just change? 400 overnight stays.

You've been through the process. I'm gonna ask you what board certified patient advocate means, but I'm just curious, is there anything you would just like, Hey, look. If this were my hospital, if I could redesign it. If I could redesign anything here, it would look something like this.

Erica Olenski: There's one process that I would say I would very drastically shift. And I don't know clinically how this would implement, but I would love to challenge us to think differently about the front door of the hospital. And that's the ed, the emergency department. you could have been discharged the same day.

Out of its honoring of triage isn't efficient entirely in terms of time and resources 'cause you're really reliant on a lot of different points of care to be able to appropriately assess. That said, if you're discharged the same day, I just wish there was some other way to accelerate getting a bed in the facility if you know that you're headed to being inpatient.

there's got to be a way to streamline that experience because what's so taxing, I believe, at least for caregivers, and I would imagine, even adult patients, is you have to go back into the ED and then you're there waiting for a bed again.

Bill Russell: Is there no other way for you, like through your, I mean you have a no

I think more than anything that we could reimagine in some form or fashion that would make that time into the hospital smoother for some of these families that have recurring admissions and discharges,

Bill Russell: board certified patient advocate. I didn't know there was such a thing, so congratulations. Um, Thank you.

What does that mean? What is that?

Erica Olenski: So Board certified Patient Advocate is a certification program for patient advocates, which are defined as individuals that are, um. they're to support and augment the experience of care on behalf of the patients themselves. Patients as you know, right of little economic or even, really influence across the board, not just economic, but even data influence.

There's a lot that can be done. And there's a lot that AI which will I think get to in a little bit. There's a lot that AI can do to help close that gap, but the board certified patient advocate function also is there to help ensure that patient and caregivers around the patient are properly supported.

The role of patient advocate. I didn't really understand it, but one of my friends was in the hospital and we went to visit and his wife was there and she's a nurse and they came in to talk to her while we were there. And I heard her get sort of elevated and agitated.

She's we're not gonna do that. That doesn't make sense. I need to talk to, I need to talk. And she like put 'em through the paces. And then when she was done, I said, you know what? What's going on? And she said, I. Well, they wanna do this and, but they're skipping like two steps. Yeah, it's just they're expediting in order to open up the room.

I'm not worried about them opening up the room. I'm worried about them giving it, him the best care possible. But she knew that I would've never known that. and I would've just been like, oh, okay, they're saying that this is the next thing to do.

So often we don't know what we don't know. Right. And as patients and caregivers, if we haven't experienced it or haven't gone through that, we don't know even what to ask.

In a lot of cases or what might be possible. We ran into this experience even just this weekend where my son was needing to get a CT scan, which a CT in this case was gonna be superior to an MRI, which he already had scheduled for this coming week as a routine test and diagnostic test.

The tech that was coming to bring us to the CT room and several other people in that room. Were dis debating or discussing him as a case and started talking about what they were thinking that they should do, and they were. Talking amongst themselves about whether or not they should, and it just made no sense to me.

easy access to context on this patient and with his history and complexity. This isn't a typical, never have experienced or interacted with the health system before walking in the front door, and now we're working from a blank slate. There's a lot of history and a lot of context involved in making decisions when it comes to my son's care in particular, and any other patient that's.

Complex or in a long-term, more chronic acute scenario. They're facing the same issue. And just the lack of discussion was really striking. And I think I upset one of them. The other one was like, I'm really glad that you were here because you're a really good advocate for your son.

Bill Russell: That's awesome.

Have you used AI in your son's care

I said, what do I do in terms of my escalation? There was a practical and pragmatic application for using AI in this scenario, but the part that really struck me as most. Revolutionary in terms of technology. ChatGPT took a trauma-informed approach to interacting with me as his caregiver was validating.

I use chat GPT throughout our ER admission. And shared test results to the extent, anecdotally shared results in the application as we were going through. And, just deliberating on how do I face a really catastrophic milestone in his care? Should that be the scenario we're facing? And how do I process that?

And the trauma, our brain experiences when we're going through something like this really impedes our executive function. So having the ability to outsource, not just like the practical application of caregiving, but having an emotional validation friend, I suppose as I'm going through that's available to me, without any restraint.

And the emotional validation that this application gave me was remarkable. It was unbelievable. It was like talking to a friend.

Bill Russell: Yeah. That's trauma informed is really interesting. 'cause you're talking about a computer, you're talking about algorithms, but exactly this is what we've heard about AI to date.

That for AI to say those empathetic words costs it really nothing. Whereas for human, I'm, oh, I'm. Traveling around that hospital, I'm seeing all these different people. I'm busy. I'm sort of hectic and I don't know, it depends on what shift you're on and that kinda stuff.

I love the aspect of someone to talk to. I'm trying to explain this to people. Because I'm a sole proprietor with my business, and I've now gotten used to saying my business partner is AI.

Erica Olenski: Absolutely. I had several breakthroughs actually with the technology this weekend. 'Cause I've been using it for even some religious and philosophical study as well in my spare time because that's how I like to use my time apparently. and you know, just being able to identify texts that might be interesting based on my interests or other areas that I'm interested in exploring more.

That's really incredible or finding community around that and access to that. I learned things this weekend just interacting with the tool as I was validating some ancestry research I did about 15 years ago, and it helped me validate it and then helped me identify some areas of exploration that I wanna go pursue some more.

Being able to have discourse with a tool that can help you further and deepen your own knowledge and understanding of texts like that is incredible. And then in the same breath, say, Hey, my son's complaining of a headache. What should I do? And not that I'm gonna defer responsibility, like you said, as a business owner, right?

As a mom, I'm not gonna defer responsibility of me as a mom, but that sounding board outside of your personal connections, that can be tired, especially when you've got a long, chronic acute caregiving scenario like we do. Folks get tired, they get fatigued, providing support and emotional support. And so having an inexhaustible resource like that to provide the emotional validation and the strategic sounding board is invaluable.

Bill Russell: Dave deBronkart. Yeah. Give me my damn data. Dave

Erica Olenski: Uhhuh. Yeah.

Bill Russell: E-patient Dave E-patient Dave. I read a post over the weekend where he was talking about we have been working, getting the EHRs to have that longitudinal patient record.

He said what he would like to see in the future is that complete longitudinal patient record available to the HR. That's great. That's wonderful. He goes. I also want that complete longitudinal patient record available that I can give it to, doctor ChatGPT or Dr. Claude or Dr. Gemini, whoever you're going to interact with and have it look at that entire record.

There's people that are very concerned about that. They're concerned that we're gonna make the wrong decisions. They're concerned that, where does the liability lie in terms of making decisions on those kinds of things how do you think about that and where do you fall down on those kinds of things?

Yeah. And so I think that's a real concern that we need to honor and recognize and respect. But it's like swimming, right? Like you get in the water you respect the water, but it doesn't mean you shouldn't go swimming.

Bill Russell: yeah just jump in and you go, and you, the best way to become a strong swimmer is you get in the water and spend time in there and get to know it, and get to know your capacity, your capabilities you respect and honor where you're at in that space.

Erica Olenski: But you always respect the ocean or the water, wherever it is that you're swimming.

Bill Russell: Back in the day we used to worry about, the medical records scattered all over the place. Is your son's medical record brought together in one place? Have we gotten to an interoperability standpoint?

Bill Russell: Wow.

Erica Olenski: My computer, first of all, couldn't even get access to this document without a CD rom, which no computers use anymore. I had to get the data center to print it onto a CD. I had to go on Amazon and buy an external CD ROM drive to be able to run this thing, and then my computer couldn't render the document fast enough to be able to actually even do anything with it because I can't just control find all instances of some text thread I'm looking for.

Bill Russell: I do wanna talk about August's artists. Talk about how this started and what the mindset is around it and what the benefit is to patients.

But it was really in a large part, inspired from our inpatient experience when I was caring for my son August, which is. Its namesake as an organization. We spent obviously a lot of time in, the hospital and inpatient, and one of the things that the families do, and they were doing this already, so I can't take credit for the artwork piece.

But a lot of families are already using these window crayons to personalize the space that they're in. And there's not a whole lot of other control around your personal environment. When you're in the hospital. You don't get a lot of space to do things that you want. You might be able to have a blanket on your bed or someone delivered flowers and you could put them in the corner of the room.

personalize the space. And so a lot of families are doing this on their own as a way to spend time metabolize their grief or the trauma and stress of the experience of being in a hospital, being out of control of your environment so much. And so as I was inpatient with my son and we leaned in hard to this concept because it was a comfortable way for us to also process our own emotions.

And then when Covid happened and we were ideating on this concept, one of the things that stuck out to me was the, a lack of access to volunteer resources. So whatever the business model was that I was thinking through, that was initially inspired to maybe engage some artist communities to come in and donate time and resources, which I think are still possible today.

Covid really changed that because I wanted a solution that would allow us to survive. A potential pandemic should that happen again, and that meant that we might not have access to volunteer resources.

So the second pillar of our organization is focused on commemorating the artwork that the families make because when they get discharged, they can't bring those pictures home. But those pictures become a really formative fixture for their experience that space and whatever happened in that room.

Bill Russell: Are hospitals receptive to this? You give 'em crayons. Do they all have the space that they can do something?

Erica Olenski: Yeah. Most hospitals are designed that way. They have windows into the patient rooms. They don't isolate the door to the hospital room.

Really from a safety standpoint. So that is a conversation we've had is that with windows and a picture on the window? Is it obstructing a view. More often than not, it's not a problem because it's got some space around it and we're not doing necessarily artwork on all of the windows, per se. Or the families aren't doing artwork on all of the windows.

There's not a lot of extra space for program investments, so that what we do is we make it a completely turnkey process for them, where we work with the Child Life team directly to make sure that they have everything that they need and they can just outsource the program function entirely.

Bill Russell: so how can people be, involved?

You have hospitals, you have potentially families and patients, and then you have people that are saying, wow, that's amazing. I'd like to support that.

Erica Olenski: As any nonprofit, right? Capacity is our biggest challenge and there's a chicken or egg scenario with that comes with that. So donations are always appreciated because it gives us the ability to introduce this program to more facilities, which is really incredible, or lean into programs and facilities that we already have established and just continue to provide them more resources that help them support the patient families that they work with.

It's august artist.org, is that right?

Erica Olenski: Yep, that's right.

Bill Russell: And August is plural.

Erica Olenski: August is possessive and then artists is plural.

Bill Russell: August I wanna close with a couple things here. One is there's a quote from you from way back which hurts more, mile 22 or insurance prior auth.

And I wanna, I wanna come back to that quote. Because it does point to actually a series of articles I've been writing on this whole idea of the referral management and whatnot, and just how long that takes and how difficult that process is for the patient. Did, do you remember, is that quote attributable to you?

Erica Olenski: likely it's by mile 22. That sounds like something I would say.

Erica Olenski: Oh my gosh, so much is happening in mile 22. Well, it depends on which mile of which race too. So if you're an Iron Man, it might be a little more painful in mile 22 than in a typical marathon on its own, but it's its own race. Right. So it's its own experience. Mile 22 is a very interesting place to be in because you're still just far enough, you can't rely on adrenaline exclusively to get you to the finish line.

You're almost there.

Bill Russell: So there's a lot, there's a lot going on in your mind. There's a lot obviously going on in your body at mile 22. How do you equate that to insurance prior auth?

Erica Olenski: so prior auth is its own monster, right? And there's different variations of experience with that. When I think of prior auth, I guess I just think about the pain of insurance overall and what it takes to get things approved sometimes that maybe aren't automatically approved when you have to justify or explain why something should be included.

And so Mile 22 is similar to the prior auth because. Or really just any insurance claim requiring additional oversight and debate because you're almost there. You've already gone through the process of getting, whatever diagnostic test done, you've seen a physician, you've had a discussion you've debated, what direction to take maybe in your plan of care.

So it's like mile 22 because you're not done yet, but you can see the finish line, you can see where you're going, but it can create this additional obstacle that can almost confuse or like I said earlier, there's this like feeling of despair. I think that also fuels so much of that prior auth experience and the debate that we have as an industry.

Bill Russell: Because by the time you've gotten there, there's a little bit of hope that's been given to you. It's hey, we've found a path, a whatever, and then all of a sudden somebody from afar who you don't even see is saying, hold on. I need this, and this, before we can proceed. And you're like, well, but there's the finish line.

It's sorry. Yeah.

Erica Olenski: Yeah,

Bill Russell: do not appreciate. You're like,

Bill Russell: rapid fire to close here. I just started doing this recently with the show. All right.

Erica Olenski: Let's do it. What

Bill Russell: buzzword you'd most like to banish forever?

Erica Olenski: A buzzword?

Bill Russell: Yeah. Buzzword.

Erica Olenski: Oh I, I don't, I don't know this one.

Bill Russell: This, I was on a panel discussion and they asked me this question. It's which buzzword do you not are, and they were like, well, what about cloud?

What about this? I'm like, I like 'em all. I, I wouldn't get rid of any of 'em. I'm like, they're an indi. If they're a buzzword to me, it's an indication that people are talking about them for some reason So, worth looking at.

Erica Olenski: i'm very similar to you and I appreciate the use of language in so many ways.

But I think we've really thought through that word. Or maybe it's a little bit overused right now, this thought of reimagining something. And I don't know if we have to fully reimagine healthcare per se, but we do need to be thinking and imagining about ways to make it better. And so maybe that's my, my course correction on that word.

Bill Russell: Music question two points in your life. One is 16-year-old in a car. What music are you listening to? And when you're working out this week, what music are you listening to? I wanna see the progression is what I'm,

Erica Olenski: oh my gosh. Well, 16-year-old me and current day, Erica, our very similar. I am a Disney princess at heart, so it's not a stretch to imagine.

And that's my jam. I love anything musical theater, and in that category.

Bill Russell: Yeah. We were watching American Idol last night and somebody sang Defy Gravity. I think we were watching a couple weeks back. So if somebody's saying that's not what was on last night, then they can know that I'm streaming it, not watching it.

Erica Olenski: I've been singing Defy Gravity for 20 years now, and it's one of my favorite songs and I'm thrilled that it has become popular again.

Erica Olenski: The human.

Bill Russell: last one. Favorite post-race carb.

When you're done, your race, what do you crave and run after?

Erica Olenski: Ooh. It's the same stuff I eat during my races. Salted potatoes, watermelon, peanut butter, and apples.

Bill Russell: Really?

Erica Olenski: Yeah.

Bill Russell: So you're eating that during the race as you're going along?

So once you reach your capacity and training, you spend the last two months dialing in on your nutrition. That's mostly what you're training is focused on. So the stuff I eat that I'm racing with is the same stuff I'm eating right after the race. It's just my energy output's slightly different.

Bill Russell: So you never just go straight into cheat mode.

Erica Olenski: I just, I want good fuel. The fuel, the same fuel that helps me get through is the same one that helps me recover.

Bill Russell: That was very affirming and very I don't know. It sparked my conscience as you said, that like. food is fuel. I, food is

Erica Olenski: fuel, movement is medicine.

Yep.

Bill Russell: Absolutely. Erica, I wanna thank you for coming on the show, sharing your experience, and I look forward to catching up with you soon at a conference soon.

Erica Olenski: Oh, I can't wait. Thank you so much, bill. I appreciate it.