From Marketing Executive to Patient Safety Leader featuring Karen Curtiss
Listen in as we sit down with Karen Curtiss, a Board-Certified Patient Advocate whose journey into patient advocacy started with her quest for a lung transplant to save her dad's life. Karen was working in advertising and marketing at the time, but she dropped everything to advocate for her dad who was near death from pulmonary fibrosis and beyond the transplant cut-off age in most hospitals. Karen was relentless in her determination to get her father’s medical records to the #1 transplant facility in the world, convincing them that her dad was the ideal candidate for the lifesaving lung transplant he received at age 72. But everything took a turn for the worse when inadequate hospital safety measures resulted in her father’s passing.
Since then, Karen has been on a quest to help other patients and families access and navigate our complicated health care system for the care they need. She is the founder and Executive Director of The Care Partner Project, a Chicago-based nonprofit organization that develops and implements evidence-based tools and resources for both families and providers in order to support safe care practices and prevent harm in hospital settings.
Karen is a respected patient advocate and patient safety leader, and her story has inspired countless advocates, healthcare clinicians, hospitals, and policy leaders. Her strong track record of collaborating with other health care leaders and innovators including The Patient Safety Movement Foundation and as a study advisor at Harvard Medical School makes her a compelling and knowledgeable voice for the profession. Don’t miss this engaging and informative interview with one of the premier leaders in Independent Patient Advocacy and patient safety.
Transcript
Host
Karen Curtis, thank you for being here on the patient advocacy now podcast. Karen, it comes to us from the care partner project, which is a really wonderful nonprofit that has, uh, amazing resources, uh, for free for patients and loved ones. Um, and they partner with some of our favorite people advocates to spread awareness about these resources and about really being knowledgeable and confident.
in the healthcare space in general to get safe healthcare. Am I right? Am I saying all that right Karen?
Karen Curtiss
You said it perfectly and very succinctly. Thank you.
Host
Yeah, my pleasure. So tell me, tell me the, um, impetus behind the care center, the care partner project, how it got started.
Karen Curtiss
It started really from a very personal story. I was in advertising and marketing for many years, but gave it up when my dad was diagnosed with a terminal disease called idiopathic pulmonary fibrosis which has no treatment and no cure. It's...
usually claims a patient's life in about four years. And there is hope if you can secure a lung transplant. And long story short, I just made it my mission to get him on that transplant list. Cold calling surgeons all over the country. And I use...
Host
How do those, how do those calls go? You call up a surgeon and just say, hi, I'm Karen.
Karen Curtiss
Well, I should have backed up. I packaged up, as advocates do, in a neat little binder all of his records, all of his disks, everything, and also collected endorsements from his doctors and others that he would be the ideal candidate for transplant, and he would be very compliant, because there's a lot of...
Host
Candidate.
Karen Curtiss
care that's required post-transplant to ensure the viability of that lung and that he was just ideal. And so these binders went out by Federal Express to there were 16 transplant centers in the United States that I targeted and I would just literally pick up the phone and say, hey, I sent you this kit, this notebook and
Host
I think that's great. I mean, it's clear you have a marketing background. That's the perfect way to get your foot in the door. Everybody opens a FedEx package. As long as what you're sending is strong and compelling, who doesn't answer that phone call?
Karen Curtiss
Yes.
Karen Curtiss
Yes, and it was a binder and it was tabbed and it was, you know, I even had, it sounds silly, but there was a map in there of where mom and dad lived and then where all of the medical facilities were around their home so that if anything were to happen, it would be in very good hands, you know, so that lung would be protected. It was a gift, right? You know, the lung is a gift. And so,
Host
showing the proximity, yeah, absolutely.
Host
Yes.
Karen Curtiss
Unfortunately, dad's discharge was on the horizon after a successful lung transplant at the number one transplant facility in the country, by the way. And he took a fall and it just led to numerous hospital infections and blood clots and more. And even though his prognosis was really good.
His doctor thought he would be back on the golf course within a matter of a few months. He actually never left the hospital. He was there for seven months and died seven months and one day after his transplant. And my sister and mom and I were there nearly every day because that's what you do. The only thing we learn in healthcare is if a loved one is in the hospital, you show up, you go, you're there. But we were clueless. We were really clueless. We had no idea.
And about six weeks after we lost dad, my husband ended up with sepsis and a VRE infection following what was called routine surgery in another hospital. And he nearly died. It took him 18 months to recover. So we had very strong deep relationship with hospital infections. So the first thing I did was to look up
how are hospital infections acquired? How do you prevent them? And I organized it into a neat little checklist for families like ours, so they could take it with them to the hospital and know what to look for, what to say, what to do, and when to get a nurse. And that was the first checklist that I published.
on a website and made it free for anybody to use and to download. And from there, I went to Preventing Falls, Blood Clots, DVTs, and all of the other things that Dad experienced, which I later learned that Medicare had called never events. All of those things that he suffered are very common, they're preventable, and they're called never events because according to Medicare,
Host
Thank you.
Karen Curtiss
they should never happen to anyone. However, they're very labor intensive. I mean, it's, and we can't, it's tiny little things that add up to safe care. For example, all those hours of watching the Golf Channel with Dad, if I had that checklist, I would have known that I just pull out my antibacterial wipes and my bleach wipes, and I just wipe down every surface.
Host
Wow.
Host
What do you mean by that? They're labor intensive.
Karen Curtiss
And after anybody came into the room and left, I'd wipe them down again because MRSA and staff bugs and VREs, they all are carried in on uniforms and stethoscopes and equipment. And it's just keeping them clean. I mean, they're just knowing that, you know, you can pick them off the elevator button. So people have to keep their hands washed. It's...
It's just that simple, but we can't expect hospital staff to be running around cleaning all those circles.
Host
Yeah. One, and in the case of your father, you know, in order for the lung to be accepted, he has to be on immunocompromising drugs. So, so those infections are, are just rampant and you know, a common cold could be deadly for someone in that position.
Karen Curtiss
Exactly. That's a very good point.
Karen Curtiss
Exactly. And, you know, to some degree, all patients are immune, immunocompromised, but just because they're sick. So yeah, so I feel that's not strange. Yeah.
Host
Thank you.
Host
Sure.
Host
So that's how it started from a personal story and you made your first checklist. What made you decide to make more checklists and kind of really create a pretty powerful nonprofit that you're kind of behind now?
Karen Curtiss
Well, thank you. So I realized that doing SEO, meaning search engine optimization for a website such as ours, where we want people to come before they ever go for a hospital stay, or we now have checklists to cover how to prepare for any doctor appointments that you have so that you could get the most out of every minute together.
and how to make decisions between hospice and palliative care. We have all kinds of checklists now, but to do SEO for that, to bring people in before they have the need for it is nearly impossible because we don't, no, we're not looking for it. We're just not. And I'll never forget, you know, being, walking through the doors of that hospital when dad was getting his transplant because he got a call and he had to get there like in five minutes, you know.
Host
Yeah, because they're not looking for it.
Karen Curtiss
I just like, I could have kissed the ground. You know, it was going through that revolving door. I knew everything was going to be a okay. It's like the worst was over. We got the chance, a second chance at life. And I think most people feel that way. You feel just so grateful. And that is, you know, and that's great. We need to be grateful for all of our care providers
fabulous facilities. But on the other hand, they're stretched and we all need to know how to pitch in. But we don't know that, especially if you're not, if this is your first time, you know, you've had a healthy life, this is the first time you need any care. So advocates know that though, they get it. So I needed to figure out how to create, how to actually,
Host
Yeah.
Host
Right.
Host
No.
Karen Curtiss
create awareness in local grassroots kind of way. So created simple like one hour presentations that help complement actually our content on the website, kind of bring it more to life in these one hour community presentations. And by partnering
with the patient advocate community, the professional patient advocate community, I saw it as a win-win because if they can get our content out at the grassroots and they're the ones delivering it, they create awareness of the patient advocacy as a profession, but also of them as a resource, a valuable resource. Yeah, our checklist can take people only so far.
Host
of themselves as a possible solution.
Karen Curtiss
professional advocates offer so much more. And so, and as I say to the advocates who are part of our, we have about 50 now who are covering different areas of the country, is that you could give out your business card one at a time with people that you meet at the grocery store. And of course I'm simplifying it. There's so many other ways to get the word out. Yeah, or you can speak to a group of 10 or 12 or 40 or 50.
Host
for sure.
Host
Sure, of course.
Karen Curtiss
or 150 and they get your business card, they see you, they feel comfortable with you, you start to build rapport and trust, you walk away with their contact information, their email addresses, because we supply like the check-in sheets. So when people check in, they write in their names and they get their email addresses and...
Host
You… I'm always here...
Karen Curtiss
We have an evaluation form at the end and they fill it out and another opportunity to collect their email addresses. So there's a relationship that started because I have to tell you, like the reactions to our programs have been pretty great. And they actually, this is the best testament of all.
is in our evaluation forms, there's a final question. Is this a program that you would recommend to a friend? 100%, we've been doing this program since 2012. 100% of evaluations. I come from market research, that never happens. That question is on every survey you ever send out and it never comes in at 100% because...
I feel like people are picking up such valuable information and it's information they're not getting anywhere else. So the speakers, who are the patient advocates, walk out of the room as heroes. They're heroes. And they've made an impression because they've offered something super valuable and interesting. And I have to say, we try really hard for our presentations to be, some are tough topics, but we try to be very upbeat.
very positive. It's kind of hard, like I'm working on one now on hospice and palliative care. That's a tough one. But people are nonetheless grateful to feel.
Host
Yeah.
Host
Well, yeah, I mean, if you are in the unfortunate position of having to go to a hospice or putting one of your parents in a hospice, you at least want to know how to do with dignity, with care, and get the most out of the time you have left. And I think that that's what people are looking for.
Karen Curtiss
Right, right. And we have another one too that's very similar on, you know, how do you choose somebody to be your health care proxy? You know, so often we think, well, of course it's my spouse or my oldest daughter or whomever, but in our presentation we talk about from both sides what it means to be a health care proxy, why it may not be a good fit for you, it might be hard or for the person, why
you know, they might want to choose other people. We always give people something to think about and we try to cover all sides. Now we have another presentation that's called Maxine Moments in Healthcare 10 Times When It's Really Important to Speak Up. And it's based on that Maxine character who's very sassy. And so we cover.
Host
You can put a little light humor in there, make it a little fun. Yeah.
Karen Curtiss
So we have enough, I think we have enough balance.
Host
So for the advocates listening to this, this episode, are these programs and presentations just available for advocates to give over to different groups? Is that how it works?
Karen Curtiss
Yes, so we have a modest licensing fee. We have a month because all of this, the copyrights are to the Care Partner Project. And this is licensed material. So we have an initiation fee and then we have a modest monthly fee. We have a Facebook page where we can congregate and share information and have questions back and forth sometimes. I do a boot camp.
to help people feel comfortable with all of this. We have 26 different tools in our speaker toolkit. Everything.
Host
So it's the tools and then I'm sure even in the bootcamp, you're, you could go over how to approach different organizations, but you're essentially giving them toolkits to make connections and something to speak about that's actually beneficial that positions them as the expert that they are. I think it's wonderful.
Karen Curtiss
Mm-hmm.
Karen Curtiss
Oh, absolutely. Well, in our toolkit, we even actually give them lists of the types of organizations, a marketing letter. There are videos of me presenting each of the presentations so that they can get a flavor of it, so they don't feel like, oh, I have to go into this thing cold. I've seen it done. We have.
you know, articles that I've collected about, you know, just how to, you know, sharpening your skills as a speaker. Although people who do come to me and say, well, I've never spoken before. I don't know, I feel nervous. Honestly.
These presentations are pretty self-explanatory and they know this information cold and it just comes across that when you know your stuff, it carries the day.
Host
So I think, I think it's a combination probably of the aesthetics, putting it together and then the structure, because oftentimes what you find, especially, and I've had them on the show before where you have an incredibly educated and experienced advocate. Sometimes they can kind of hit you like a fire hose with all the information. It's just because they assume you know more than you do, or, or it's just coming out so fast. And so probably what the presentations also do is provide that
step-by-step structure that they might be glossing over that can speak to a wide audience. Slow Joe in the back row who might be getting it at his own pace kind of thing, is that right?
Karen Curtiss
You know, you are so insightful. Yes, yes. That is exactly what we try to do in our checklist and in our community programs, which are just PowerPoint decks, which are like nicely, we have a professional graphic designer who puts them together, but it's bite sizes that people can handle. And that's, you've got it, yes.
Host
And I, what I love about the program we, before the show started, we were talking about it is, you know, a lot of people then view the advocate as the expert and they join their email list. And then you don't leave the advocate hanging. You actually have newsletters that are pre written. So if they don't know what to write that week, they have something that they can download and send in their mail chimp or constant contact or whatever platform they use.
Karen Curtiss
And actually that's a separate subscription because not everybody wants to do emails or newsletters. Although I do say, you know, because I come from this advertising background, I do kind of keep in touch with like what trends are and marketing and so forth. Even though all of us feel sort of like, use the expression earlier, firehose, sometimes I feel like that with the emails that I get. It's like, oh my gosh, shut it up.
Host
Thanks for watching!
Host
Yeah, yeah.
Karen Curtiss
they're still the most effective way to stay in touch with your audience. So when you.
Host
Not only that in terms of the cost, I don't know if you ever heard the statistic. I think HubSpot did the survey and they said that, you know, email marketing is you get a 40 X plus return on your, on the spend. I mean, across all industries, it's, I think you're right. We get more emails than we want, but when you get that right email at that right time and you're in the right head space, that's when it pays off. And the only way to make sure you're actually there is by
Karen Curtiss
Oh yeah.
Host
the consistency of just doing it until that, you know, fateful kismet moment of getting in front of the right person at the right time.
Karen Curtiss
You're absolutely right. And if for no other reason they see your name pop up and if you've used a good subject line that links to a topic in healthcare, it's just that constant reinforcement of this person with this expertise. And I have to say all of our newsletter content is, you know, just it's.
bite-sized information that's valuable, interesting, little known facts about healthcare. So when they do read it, it's perfectly consistent with the expertise that is associated with professional patient advocates. It's just nothing but, it's a good, it's a good, oh, what was the right to say? Not a representation, a good, yeah, I guess that would be a good representation.
Host
It keeps them, it keeps them positioned as the expert that they are. Yeah. I think that's great. I mean, it sounds like you're providing incredible tools that just, if nothing else, make it easier for advocates to not worry as much about all the content they have to create to stay in front of their audience and stay pertinent and, and positioned as that expert. So they could focus on what they really love and want to do, which is working one-on-one with their.
Karen Curtiss
Exactly. Yeah.
Host
with their clients to make sure they stay healthy.
Karen Curtiss
Oh, absolutely, absolutely. Much less, maybe have a little extra family time or go out and get a manicure, you know, because.
Host
Yeah, right.
I've run email newsletters. It's not so simple to put those together. Well, I mean, it takes a tremendous amount of time. So
Karen Curtiss
Yes. And I like to write. I really do. I love writing these articles. It's, you know, we have kind of a big library and they're all, yeah.
Host
That's great. What are the big goals for the Care Partner Project?
Karen Curtiss
Oh my goodness. The big goals are I would love to double or triple or quadruple our reach of community education.
Host
So more advocates, more speaking, that kind of stuff? Is that what you're talking about?
Karen Curtiss
Yeah. And, and, and actually I would love to see them do more, just like, not to take your job away from you or anything, but like, and do press.
Host
Mm-hmm.
Host
Oh no, I'm… We're a non-profit also, this is not, you know, this is 100% just to spread awareness of the issues.
Karen Curtiss
Yeah. Well, one of our one of our speakers, Deidre Kindred, I just want to give a big shout out to her because she doesn't she doesn't wait for people to book her into a meeting room. She does lots of virtual, lots and lots of virtual. And she's very good at it. And it just nothing stops her. She'll she's you know, and and.
Host
Yeah, she's determined. She's been on the show. We love her.
Karen Curtiss
Yeah, she's great. And she's, you know, she's, I other people, I think, I don't know, maybe I'm wrong about this, maybe feel a little more intimidated by doing the virtual.
Host
It depends on their background. You know, some people don't have one of the nice things about being an advocate is you're really just dealing with one or two or three people in the family. And so the thought of speaking for some of them is a new concept. And, uh, but you, it sounds like you make, you know, you're holding their hand as much as you can short of actually being there physically with.
Karen Curtiss
Yes, I do feel like that sometimes. I don't want to micromanage them either. I feel like all I can do is provide these tools and encouragement. And I've given a class on how to just do like a one minute video, like just take one slide and just do one minute video that you can send out as a text to your list. Maybe that's an alternative to newsletters.
I don't know, but just, this is a bit self-serving. I want our content to get out there. I want every single person in the United States to feel like they're informed, confident, comfortable, and that it's okay to ask questions and to be part of their healthcare experience. But that really is a fire hose situation, but still we keep crying.
Host
Yeah. No, but I like, I think that's, that aligns perfectly with the goals of advocates, which is you want to empower the patients to take control of staying safe in a hospital setting, no more about their healthcare so they can prevent issues from happening. That's the ease. It's much easier to prevent a fall than to deal with it after it happens. So it's, I love the philosophy.
Karen Curtiss
Ha ha ha!
Karen Curtiss
Exactly. And we actually even have one on managing your telehealth appointment. And this came from one of our advocates. The idea for this is Andy Giblin is a doctor in South Carolina and she's on our speaker team. And she does a lot of remote telehealth.
And she was telling me that people were showing up for their appointments, like from the grocery store or the pickup line at school. And she said, this is not productive. So we have a whole program on how to prepare for that telehealth meeting and when it's right for you, when it's not right for you. But as I think that's, it just never, it kind of blew my mind when I heard it's like.
Host
Right.
Karen Curtiss
Really from the grocery store you're propping up your phone?
Host
Yeah, yeah, it's actually funny. I had to do it for one of my family members once and I have this vocal booth with a microphone and when the guy on the other end showed up, he's like, are you in a recording studio? And he's like, I'm used to doing this on a motorcycle with people. And I'm like, yeah, I just happen to work here. So it was, to him it was like, man, what a relief. We can get through so much, so much faster. And I had a notepad in front of me, ready to go with the questions and the answers. And
Karen Curtiss
Wait.
Host
That little bit of time preparing for stuff makes such a huge difference, whether you're doing it via zoom or whatever, telehealth platform, or even if you're going in person to see the doctor, cause you're not, you're only going to get 10, 15 minutes on average.
Karen Curtiss
Exactly. And that's what we stress. Figure 15 minutes, anything more is a gift. But get your questions up front. Get your goals met. And actually, I want to take this clip as a testimonial for our programs.
Host
Yeah, you're welcome to use it. Well, Karen Curtis, thank you so much for being here. If you are a patient or a loved one looking for some of these checklists, or if you're an ambassador, excuse me, not ambassador, an advocate looking to even join the speaker team and look at some of these community presentations, you can find it at the care partner project.org so that you do spell out the, the THC care partner project.
dot org. All the links are there. Um, and you'll even see some videos of Karen right on the website.
Karen Curtiss
And also, I should mention to you that all of the resources for advocates are in the blue nav bar at the very top and in the footer. And that's not to minimize advocates at all. It's just our next, in fact, I just wrote a grant for this is like, we need a big chunk of money to redo our website so that we can have a proper landing page. And it's...
Host
or the advocates, like a little portal.
Karen Curtiss
at least dedicated to the advocates. But right now we're just not, I just don't feel like, I built the website myself and that's the limit of what I am capable of doing. We need.
Host
Well, bravo for, you know, not waiting for permission and just getting it done. That's what the grassroots, you know, they always get things done fast that way. And it doesn't, and by the way, you know, for, for doing it yourself, you did a heck of a job, it looks, it's, it's about as organized as you can hope for. And, um, there's a lot of amazing resources. I highly recommend it.
Karen Curtiss
Thank you.
Karen Curtiss
Oh, aren't you sweet. Thank you so much. And thank you for this opportunity to share the Care Partner Project with all of your followers. Thanks. Okay, take care.
Host
Absolutely. Thank you for being here.
