PowerLiving with Kimberlee Langford
PowerLiving with Kimberlee Langford
Transforming Kidney Health Through Patient Empowerment
Power Living with Kimberly Langford, where inspiration meets empowerment. Kimberly is a nurse, executive leadership coach, reiki master and your guide on this journey to whole person wellness.
Speaker 2:Yes, I am so excited to have you back on the podcast, dori. As you know, I'm a big fan of the work. Well, I'm a big fan of you and the work of Emi. I love the materials you put out. I just got to make a plug for you. You are at my right hand.
Speaker 1:Oh, you have all of the things. I have all the things. You have all of the things. You have the new things, you have the old things.
Speaker 2:This was my first intro, you know, as I was developing a passion for CKD and specifically keeping people off of dialysis. I just love this and I was sad when I heard it wasn't in print anymore until I got this, yeah we updated it a lot.
Speaker 2:And it's so good. It is so, so good. And you know what I love about this is that it's easy to find what you need and it's easy you take, which, in my mind, is the hallmark of any real expert right Is they take complex topics pathophysiology and you distill that down to actionable bites that people can grasp and figure out how they're going to optimize for their renal health, and you make that simple and you do such a great job of that. Then shut the back door. You came out with this one which, and I just think it really speaks volumes to the work that Medical Education Institute is doing.
Speaker 2:You know you've got what I consider to be the gold standard for patient education and also for provider education, and I know you and I've talked about that. Nobody knows we do that. I think it's a best kept secret. It's time we bring it out of the closet. But before we launch into juicy topics, I figured maybe you can give how you came to. You know, uh, develop again for all things renal and and, and tell us a little bit about medical education Institute and why people want to follow.
Speaker 1:Oh so, kind of a funny story when, when I was in college, actually when I was getting my master's degree I learned how to do PageMaker. Okay, it was desktop publishing, PageMaker 1.2, right, Like the first one out there, and I'm doing layout and it's fun and it's cool. And then they got to PageMaker 1.3. And all of a sudden I could not make heads or tails out of it and I'm like, well, there goes that idea for a career. But I was working for a woman, Edie Oberle, who was an English teacher and the wife of a man, Terry, who was in medical school when his kidneys failed. They were married and they had one, one son, and he is two years into a three-year medical degree and he had Alport syndrome, so did his identical twin, and both of their kidneys failed at just about the same point. They actually wrote a book about it, called Twin Cyborgs, which I own a copy of somewhere and I have read it.
Speaker 1:Terry was the very first dialysis patient I ever met, very first fistula I ever saw, and it was a good inch. I mean that thing was. That was a very well-developed fistula and only Edie, I think. But I saw that and I'm like looks like a snake under his skin and I offended her really badly, which I didn't mean to do, it was just my honest reaction. I had no idea. I've never seen one of these before and what Terry really taught me is that it is absolutely possible for people to have a good life after their kidneys fail if they do a treatment that lets their lives work.
Speaker 1:So here he is in medical school kidneys fail, what are they going to do? And somebody told them about home hemodialysis. And I don't know if you knew Lila Jorgensen I'm not even sure if Lila's still around. I met her when I first started working in the field. Lila was terrific and she was still working as a home training nurse and she kind of looked a little bit like you, with the blonde, long, flowing blonde hair and just very sunny and very outgoing. You do kind of remind me of Lila, but Lila trained Edie and Edie did the treatments for Terry. And Terry finished medical school and became a renal pathologist, turned down transplants his whole rest of his life. He lived for 43 years on home hemo and turned down his transplant, Turned down so many transplants. His, his sons both offered him kidneys and he said no and he, just you know, all day long looking at microscopic slides of bad kidneys and he felt good but he had a.
Speaker 1:You know, you can get kind of a skewed view of. You know, all of the kidneys are terrible, you know, which wasn't true. But he did feel good and they did do the things that they wanted to do and they traveled and they bought a cabin in the North woods and they went there. It was beautiful cabin Don't picture a little tiny, like, you know, kids drawing of a cabin. This thing was like three stories and vaulted ceilings and it was beautiful, yes, and the grandkids came there and they really built a wonderful life. And so here's Terry living this amazing life. So clearly it's possible to do that.
Speaker 1:And then I'm looking at the statistics, I'm looking at the USRDS, I'm looking at, you know, the survival statistics for standard in-center dialysis which is not what he ever did were and still are how do I say this? Nicely, dismal. That's the best I can do, you know. I mean, when we compare ourselves to the rest of the world and there's always people who will make allowances oh well, we're different, we're much more diverse. You know, we do. We dialyze people of all ages. You know what Every country does. That that's. That's not really true? What's really true is that other countries who are doing dialysis are doing it more gently, are doing more hours.
Speaker 2:They're doing it slower and longer.
Speaker 1:Absolutely they are and they're doing. You know. Kidneys filter blood one drop at a time, you know so fire hose dialysis was never a great fit, unless you're getting paid by the treatment and not the hour. There you go.
Speaker 2:Yeah.
Speaker 1:It looks really good, you know, and that's what happens. So so I knew there was a gap. For decades now I've known there's this gap between the possible. You know, people doing really well, people feeling really well, people not feeling like oh my God, my life is over, my kidneys failed, aren't getting treatments that fit their lives and what they want to be doing right now, which could be changed, it could be different two weeks from now. You know something could change completely and you know people's treatments need to change.
Speaker 1:Maybe not every two weeks, but you know we're not cookie cutters aren't we no, and we all have a different set of things that matter to us, and matching those to you know the life you want to live and seeing how the treatment is going to affect you is, I strongly feel, the way to move forward. And that's that's, that's the big project, that's the, that's the dream.
Speaker 2:That was the passion. You saw what dialysis could be. Yeah, you know, it's interesting Cause when I think back of where my end for for the renal space comes in, where did you get yours? You know I I covered pretty much all of North Idaho, from Coeur d'Alene to the Canada border, um, actually from St Mary's and just south of St Mary's, idaho Idaho is so beautiful, it's a good chunk of the state that I covered as a home health nurse and you know I was in a lot of homes and I worked with diabetes everywhere and it just seemed interesting to me how everybody was.
Speaker 2:They all had the trifecta right Diabetes, hypertension, high cholesterol and then pretty soon you see them getting their toes, their toes chopped off and then up to the ankle, and then it's below the knee, and then it's above the knee and their lives sucked and they got robbed of their independence and their lifestyle. Everything changed how they felt about themselves, their relationships and their lifestyle. Everything changed how they felt about themselves, their relationships, their freedom, all of that. And then they end up on dialysis. And about that same time this was a few decades ago, but I got certified as a professional coach, and mainly because what a great background for this.
Speaker 1:That is amazing, right.
Speaker 2:Well, it was kind of selfish on my part because my family was struggling and I wanted to.
Speaker 2:I needed something to be able to really help them and I did find it was incredible in my personal relationships to use some of the coaching framework things that I was learning about personal relationships, to use some of the coaching framework things that I was learning about. But it made me a much better nurse and I found you know, I and I lived up in North Idaho for most of my life and so you know, being able to follow people for decades, your impact was gone. And to see a matter of fact, I was just talking with a colleague today about this very same thing, seeing a guy who you know before had a hard time getting around his house and I still remember it was right before we moved down to Southern Idaho and I and he lived about a mile from me and I watched him walk in my neighborhood with his walker he could not have done that before our intervention and, uh, huge impact, or people who just see people's lives getting better.
Speaker 2:Oh yeah, it's all about. It really is. And and I think sometimes we we forget, um well, just in the hustle and bustle of healthcare as a business right, healthcare is a profit-making machine we forget the human, who's in the center of everything, that we should be in the center of everything we're doing. And, you know, one of the probably one of the biggest reasons why I'm such a fan of what you and your team are doing is you do so much to fill the gap, and there's a gap in terms of education, patient education. There's no shortage of educational material. Right, a patient goes in and sees their provider and they get shoved a handout or they're told to go home and lose weight, go home and get your a1 right in the hospital. That was the thing that, you know, my nurses always talked to me about was about how well I don't have any time to teach. Right, if you go in the room, your mouth should be moving. You should be talking them through everything you're doing.
Speaker 1:I always thought that the acutes in particular, were such an amazing teaching opportunity Because you've got somebody who crashes into dialysis and starts in a hospital one-on-one nursing, for a three or four-hour treatment.
Speaker 2:It's like you've got nothing to do but coach and teach and yes, but a lot of clinicians have a really hard time doing that and I think we don't teach people how to do that and one of the things that I've found is that most nurses, when they come into a program like some of the programs I've built we're used to telling people what to do. Well, my kids are all grown. That does not work.
Speaker 1:It never worked. Yeah, that's not how we adults are. It's kind of a joke in our house, but I'm often telling my husband is often telling our daughter what she should do and I'm like you should never say should with an adult.
Speaker 2:Quit shooting on yourself or others, exactly. Yeah, I mean, that's not how we inspire behavior change. That's that we get a different outcome. Now, every health plan out there, they want the savings, but they want this quick fix. And when it comes to how the habits that we develop, I tell people all the time we are where we are in terms of our relationships, our finances, our health, whatever the case may be, we are where we are because of the things that we're doing that we don't even think about. Whatever the case may be, we are where we are because of the things that we're doing that we don't even think about. It's the habits of self-care that make our future automagic. So it really becomes no matter what your goal is, whether it's renal or cardiac or financial, or your waist size. Hello, it's really a matter of figuring out what are the habits that I need to do to help myself optimize the chances for me to end up over here.
Speaker 1:Well, and why do I want to be over there? What is in it for me to make me change my behavior? Because it is hard to change behavior. Lifestyle changes. Yeah, because it is hard to change behavior. Lifestyle changes you know, I tell people this fairly often, like the messaging for how to slow CKD. It's super easy, yeah, big deal. All you have to do is become more active, lose weight, drink more fluids, don't eat garbage, avoid x-ray diet test, quit smoking and it's like no problem. Who?
Speaker 2:cares, you can do all of these things. Yep, absolutely. And isn't it funny Because the playbook doesn't change. But what changes to your point is figuring out what's the hot button for the person. Yes, exactly, and you know to your point the why, and it's different for everybody. You know whether it's um, I want to get my sex life back, um my relationship with my spouse has changed. Or I'm afraid of losing my job, or I'd like to get back to the size whatever had pre-diabetes for 24 years.
Speaker 1:24 years I have six genes predisposing me to type 2 diabetes, which my dad had, and my aunt and my grandmother on the one side, and now, after COVID, my brother is pre-diabetic, my mom is pre-diabetic they never were before but they are and I was all this time and I don't want to end up like my dad did. That is my motivation. I'm like, oh no, I am not going, I am not walking his path and I do not have diabetes after 24 years and hopefully I will continue to not have diabetes. But that's a daily effort. You know, that is an everything I put in my mouth effort. That is a checking my blood sugar every morning effort.
Speaker 2:Absolutely.
Speaker 1:I do it because, even though you don't, want to.
Speaker 2:You're too tired, or whatever.
Speaker 1:Yeah, I can't find my glucometer in my top dresser drawer but you know, yeah absolutely but. But we each have to find our motivation, and I think that maybe a lot of us don't sit around all day thinking gosh, what is my motivation? Why do I want to do the things that I should do? Where are my values? Those aren't things that we, I think, tend to think about, and yet they're everything they're everything they are driving us, whether we, whether we.
Speaker 2:Uh, augment dino, I love. He's got a saying. He says if I'm gonna be a slave to my habits, I'm gonna pick which ones I'm gonna be a slave to. Right, be the master. So, with all of that in mind, understanding that there's a huge gap in what we think is education for the patient, what the patient, you know, really takes a hold of, it's juicy and meaningful to them personally what do you find? Are some of these the major barriers in terms of patient well, and clinician education? We'll get to that too, I'm sure, but what's getting in the way?
Speaker 1:In terms of patients. I think the biggest thing that gets in the way that clinicians, I believe, are mostly just not taught to even think about, is the emotions, so human brains. You know, you've probably heard of the lizard brain, right, which is could I tell you where in my brain? No, I really do like lizards though, but, but you know, we have this primitive brain that reacts instantly to things, that protects us from what it perceives as threats. You know whether those are a big dark storm coming or a very large spider, or you know whatever it is, and we react emotionally before we are necessarily even consciously aware of what it is we're reacting to.
Speaker 1:The reactions are that fast because, they're intended to save our lives because you know your kidneys are, they're not doing so well. And you know, part of the issue that we have is we don't systematically teach anybody about their bodies, about you know, do we do? Do most people even know they have kidneys? If so, where did they learn that? I'm not sure you know there's just we're not really very consistent as a culture and saying, okay, all third graders are going to learn that they've got kidneys and whatever. We don't do that. And saying, okay, all third graders are going to learn that they've got kidneys and whatever. We don't do that. But also those emotions mean that if something scary is happening, the reaction is to protect yourself from that. And so what happens when I get to talk to nephrologists? Yes, exactly, see no evil, hear no evil, speak no evil. The monkeys you've seen those. Right, that is what's happening.
Speaker 1:So whenever I get a chance to talk to doctors which is less likely than talking to patients or nurses or dieticians or social workers or technicians you know the groups I usually get vascular surgeons. I speak to them every year. I don't speak to very many neurologists, go figure. But when I do, I always ask them how often has this happened to you. You are having the talk with a patient. They're at stage four and the slope is not looking good and you need to have the conversation. You need an access, you need to choose a type of treatment and you have, you give them the spiel and the patient is that the eyes are welling up with tears or they're staring off into the distance or they look like a deer in the headlights. And they come back two months later, three months later, whenever the next appointment is, and you have to have the entire conversation again and I get a room full of bobbleheads. Yeah, yeah, that's exactly what happens. So here's why that's happening.
Speaker 2:Well, and how many providers. They're terrified Well, and providers too right. We don't want to share. It's hard to share bad news with people, so I think there's no preparation to do it.
Speaker 1:Oncologists, I think, actually learn a particular schema for how to have difficult conversations, but for some reason other clinicians don't necessarily get that training, and nephrologists pretty much universally don't have it, and so we can't really blame them for not being good at something they never learned how to do. But when they should be offering reassurance, they offer facts, and facts are great, but they do not change behavior.
Speaker 2:They really don't. I love what you and I've talked about this before but the whole that twin pillars of fear and hope, you know, and how you know how we feel those twin pillars, because it is, it is scary to have news that is a threat and it's kind of scary for a clinician to share bad news, but it's not caring to not share it, right?
Speaker 1:They used to not share it. You know, even when I started in this field in the you know, 1989, so early nineties, it was common practice not to tell seniors, for example, that their EGFRs were were falling, that their kidneys were failing. They're like, ah, you're not going to live long enough, why give you the stress? And then at some point the tide turned and they did start telling people. But I think it took advocacy to get that to happen and it wasn't necessarily always a kindness to do that, you know, depending on the circumstances.
Speaker 2:But Well, you know and you it was. What you and your team at Medical Education Institute are doing I think is so fabulous. You have curated a library of patient-centric, easy-to-access tools where members can get accurate information in a timely manner, and it's hard to distill some of these concepts into three minutes, but you do it so well. Tell us a little bit about you know the tools and the innovative teaching methods that you use to really give clinicians and members the tools they need to make the decisions that are right for them in terms of modality treatment, prevention.
Speaker 1:What we are mostly just trying to do is help people understand not only what the facts are, but how the facts affect them, why they might want to care and what they can do to take action. So I was a psych major undergrad psychology and sociology and history of medicine.
Speaker 1:I dropped sociology because three majors was no wonder you're so smart well, it was a really really good psychology department and a really really good history of medicine department at uw. At the time they did not have a public health department, uh school, which was a shame, because I would have got a master's in public health. I'm probably gone and done something completely different, but anyway, it's really important that we I don't know how to. I don't know. It's weird because I'm not. I was not an educator, I wasn't trained to be an educator.
Speaker 1:But the way that I think about this in my head is, when we're trying to get new information across to people, we kind of need a structure for that information. We need places for it to go. They need to know why they care, but they also need to know what are the basics, and we specialize in not reinventing wheels. Plenty of good wheels out there, good, great wheels all over the place. All the vehicles have at least four wheels. Wellenty of good wheels out there, great wheels, all over the place. All vehicles have at least four wheels. Well, okay, some have two. Unicycles have one. You know what I mean.
Speaker 2:There's wheels. There's lots of them, yeah lots of wheels out there.
Speaker 1:Feel free to edit this out, but I tend to think of this as either a skeleton or a file cabinet. But you need a structure to put information in. When you have a complex new body of information that you need to learn about quickly, because otherwise you don't have anywhere to file it, and if you can't file it, you can't retrieve it, and if you can't retrieve it, you can't use it. So we need a way to help people organize information, fit it into a structure so that they can access it. So we're doing a lot of that. The tool that we've done, that I am probably the proudest of over 35 years of working in this field and doing all sorts of things, is that decision aid that you refer to, the my kidney life plan. Because well, that goes with the book, or the book goes with the tool, or they go. They just start like this um, yeah, so that's the book, but the tool is version 2.0.
Speaker 1:The first one was my life, my dialysis choice, which beth wittitten and John Agar and I built, and it took three years and we had no outside funding. We just did it because it had to be done and we couldn't fit. We couldn't figure out how to incorporate transplant and conservative management, so it was only a dialysis tool. That's why the title of the book changed. Yeah, that's why the title of the book changed. Yeah, that's why the first book was right Help. Yeah, first book was help, I need dialysis.
Speaker 1:The second book is my kidney life a new direction, because did figure out our operations. Director Christy figured out a way that we could include transplant and conservative management. So my kidney life plan it's free and it's online and it's in English and it's in Spanish and it's at a fifth grade reading level and it's based entirely on evidence. So there are probably 600 references if we were to count them all up, which I have not bothered to do because they're in different chapters but lots and lots of. I mean it was a year just of doing research to put that tool together and have it be up to date and accurate, and we had so many experts review everything in that book. But the point of that tool was to help people. Help people find the hope, to help them, instead of um coming at people with um. You know well. Here are your options.
Speaker 1:Pick one yeah all of the options look bad and nobody wants to need any of them. That's the trick.
Speaker 2:Well, I really like how you center that tool around. You know what's important for your life Exactly, Not just to hear your options, take your pick, but to your point, we did try that and what I mean.
Speaker 1:It took us three versions to get that first first tool done, and that was one of the ones that we rejected and it just didn't work. And the reason that we built a tool in the first place is that we moved to Maryland in 2011. So my husband could go work for the Medicare Innovation Center, and the first person that he met and we're still friends with him and his wife today was diagnosed with prostate cancer, which his father had died from, and so he had to make a decision about which treatments was. What was he going to do, and we did not know him well enough to have conversations about that. I mean, especially prostate cancer, that's kind of an intimate area. I'm just like, yeah, no, but I went online and I looked and I'm like maybe I could find him a decision, aid and send it and it would help him.
Speaker 1:And all I could find were what I call modality first approaches. Well, you can have surgery, radiation, watchful waiting, pick one, I'm like, but how do you pick one? And then I looked at the hospice literature, because there's a lot of that, you know. Do you want palliative care? Do you want this? Do you want that? Do you want dialysis? Do you want a feeding tube? Do you want a respirator? You know, if it comes to that, how are you going to make those decisions and what are you going to want. And the approaches are just always very.
Speaker 1:Like drinking from a fire hydrant. Well, but it's. The problem is that it gives you the information but it doesn't put it in a context that lets you make a choice. Yeah, like okay, and and what really kind of did it for me is I was working on a project with one of the qios who were they were trying to I think they were trying to get people to get vascular accesses before their kidneys failed, which meant that instead of being an ESRD network, it was in the realm of the QIOs and unfortunately, they did not come to me until they had already set up the entire project in a way that was never going to work. I'll just look like, oh no, you know, they wanted people visit patients in their hospital rooms and I'm like, have you heard of HIPAA? Because this is just not anyway it. I could tell it wasn't going to work. But as part of that project, I went to the National Kidney Foundation.
Speaker 1:People like us live classes and I will never, ever forget this because I sat through those classes and you know I I can use her fine, but I remember walking out next to someone who was talking to her partner and just anguished and said, but I don't know what's right for me and I thought, bingo, that is what's missing. So sometimes it's just like being in the right place at the right time, hearing the right cry for help. Well, like what when you don't, when all of the choices look bad? Yeah, nobody wants to need surgery for a transplant, nobody wants to be connected to dialysis. I mean, nobody wants these things, even though you and I know that they can give you a good life for decades. Nobody wants to need them and you can blame them. None of us would sign up voluntarily. Yeah, exactly, nobody wants to need them. But what do you want? Well, you want your life as you can get it. What you want is not to have, not to lose all the stuff that matters.
Speaker 2:Right.
Speaker 1:I don't want to lose my partner, I don't want to lose my job, I don't want to lose my home. I want to be able to put my kids through school like we always planned, you know. I don't want to have to give up my pets. I want to be able to eat food that tastes like food and not cardboard. You know, whatever it is that motivates you, like.
Speaker 1:Once you have that front of mind, then you can look at those treatments in a different way and you can say all right, these are the three most important things to me. Which treatment is going to give me those? And that's what we did with that tool and that's what was is kind of, because I think there are a lot of other medical decisions where people have a lot of seemingly bad choices where they would really maybe benefit from, instead of saying we have an x percent chance of dying in the next x years if you do this and only a y percent chance if you do that, and it's population data and it doesn't apply anyway. Customized, customized, yeah Right, exactly what if instead we came at people and we said you know this one, this treatment gives you a lower chance of having neuropathy, or this treatment gives you the best chance of having more energy, or this one is work friendly and will let you keep that job that that gives you so much self-esteem and income, and also your health insurance.
Speaker 2:Yeah, what's important to you, it's. You know, it's funny, cause while you were, while you were talking about that, I was thinking that's exactly how I shop for a car, right, and yet we don't. Yes, yes.
Speaker 1:What's going to fit my life, what I want to go camping. What's going to fit my life, what I want to go camping, what's going to fit all my camping gear, what's going to tow my Airstream, you know, whatever. Yeah absolutely. You know, so you buy the wrong car. You cannot fit the golf clubs in the trunk because it's much too short. Oops.
Speaker 2:Yeah, yeah, that definitely changes things Well, and you know it's interesting because the tools that you have besides the decision made. I love your kidney school and I've shared that with so many patients and I tell them shoot. When you're sitting in the chair there's even the audio book put in your headphones. Listen while you're there.
Speaker 1:Yeah, that was my baby in like 1998 to 2004.
Speaker 2:I still love that.
Speaker 1:Teen ladies. Now there are 18.
Speaker 2:Yep, he's there. Well, and you've got so many great things out there and, like I said, the three-minute video clips that help people to understand what's the GFR and what are the different options like. But not only that, you also have what I consider to be the standard for clinician training for dialysis techs and dialysis nurses. Tell us a little bit about you, know what you're doing there, and particularly about SPARK. Tell us a little bit about you. Know what?
Speaker 1:you're doing there, and particularly about Spark. Well, just give one brief plug to the core curriculum, because it's in its seventh edition and I worked on all seven of them.
Speaker 2:Boy, do I know a lot more now than I did when.
Speaker 1:I started working on that. One hopes, right. We hope we get smarter every year. Yeah, you know what I can edit a lot, but you still would not want to send me in a room and have me string up a machine. Maybe I might be able to do it now, but I would not do that. So SPARK is Self-Guided Program to Advance Kid kidney knowledge and we intended that as continuing education for nurses and technicians, because technicians can generally get CE credits in the States where they can earn them for anything that nurses can.
Speaker 1:And the idea was for Jen Ravert, our programming director and a home training nurse, both PD and home hemo. Jen was blessed with amazing mentoring. She worked with a PD nurse for a year who had 40 years of experience in PD and for home hemo. She worked with Sherry Miola, who is a rock star in home hemo training and just one of the most patient-centered professionals. I'm trying to figure out how to describe Sherry is amazing and she finds solutions and you know she would when she was training. I think she's partly retired and doing consulting now, and forgive me if I'm wrong about that, but I think that that's where she is now.
Speaker 1:But, um, but if a patient was working. She would train them after work, she would train them in their homes, she would train them at night, she would find a way to make a home treatment work for the patient where they were, and she just really passed along that patient centeredness to Jen and Jen just really feels this obligation to share that degree of mentoring that she had with new nurses who you know there are still new nurses entering the field and even entering dialysis but they're not learning dialysis in nursing school. They're learning kidneys, they're learning anatomy, they're learning kidney disease, but they're not learning dialysis and so they hit the clinic kidney disease, but they're not learning dialysis and so they hit the clinic. You know it's a great fit for nurses who have young children, who have school-aged children, you know who want they're not going to be off summers but but you know you can work a reasonable day and not necessarily three 12-hour shifts or you know things that would be difficult to raise a family.
Speaker 1:So for a lot of people dialysis is a great fit and for exactly that reason that you were talking about, which is that being able to have long-term relationships with people, being able to follow them over the long term and hopefully to see them thrive and do better, hopefully to see them thrive, you know, and do better, because that that is something that I think helps attract people to the field and helps keep them in the field. Like I am making a difference in people's lives, I can see this difference. This person came in in a Walker and now he's using a cane and he barely needs, you know, look at how well that kind of thing really makes a difference. And so Spark. The first two class or the first two topics for Spark happened to be home dialysis.
Speaker 2:Because we are so passionate about home dialysis, we did courses on reducing home dialysis dropout because nobody wants to go to the time and the effort and the cost and the hit to morale of getting somebody home and then having them drop out three months later.
Speaker 1:You know that's just leaves everybody feeling very defeated. You know that's just leaves everybody feeling very defeated, exactly. And there's so much that can be done to support patients and so much of that is an attitude of um, of making the treatment work for patients, of teaching them the whys of what they're doing and not just the do this because I said so, because that doesn't, doesn't work for anybody?
Speaker 2:Yeah, it doesn't.
Speaker 1:But you know so, Jen, in the course of putting together evidence-based content, and we do a full lit review for every single thing that we do. So everything is up to the minute. We are way, actually way, more up to the minute than up to date and we we use up to date and then I'll look at the references and I'm like, yeah, you could slap a january 2025 date on there, but all those references are old team. Yeah, yeah, so true, you know, that's not what we do. We actually are kind of obsessive about getting the new literature and making sure that everything is, you know, up to date, if you will.
Speaker 1:But we save lives and we save money and we save time when we help people teach their patients in a way that will allow them to succeed, not just in the short run to get them home, but in the long run to keep them home. Yeah, absolutely. And then we see the patients on the other side. We see them in our Facebook group. So we've got a Facebook group for Home Dialysis Central of 8,200 people and there's a cycle that we see that is just incredibly gratifying where people join the group and they're like, oh my God, my kidneys are failing, I need to choose a treatment and generally, if they found us, they're at least contemplating a home treatment, and they may do PD and they may do home hemo we don't know and we kind of guide them to that decision aid.
Speaker 1:Well, why don't you see what might fit you best? And then there's, of course, a zillion people who have done every different option, who can say, oh yeah, no, I needed to work too and that worked for me. Or I love to travel, and this, this makes it possible, or whatever. But we we sort of inoculate patients, if you will, who are going through home treatment, we say expect to feel overwhelmed. This is a lot to learn and it's complicated and it's life and death. And you're going to feel like there are times when you're going to say there is no way I can do this. And you can, and we know you can, and a whole lot of people in this group have done this and they've been where you are and they got past it and you can do it too, and so we are cheerleaders for folks that's so powerful.
Speaker 1:The peer to peer, yes, such a different level of support than talking with a physician yeah, yeah, the best thing for me ever, absolutely like anywhere in my in my life or my career, is to then see those newbies mentoring the new patients and saying, oh, I know exactly where you are. I was there two years ago and I joined this group and this is what happened and listen to what everybody says and you know you can do this and there's somebody awake 24 seven. You know and ask anything you want. And you know, I mean we have a. We have a whole active admin moderator team that is mostly peers, you know. I mean Jen and I are, obviously, and Beth Witten we're all admins and moderators, but it mostly is peer-to-peer and we have expert patients and expert care partners who you know will not only guide people in the right direction but also catch people who are not doing things the right way.
Speaker 2:Yeah, that's so powerful and I really do think you know when we tend to get the best results. It's not just one tool right? The best outcomes, what I have found happen when you have this multifaceted team approach and this full spectrum. You know, across the continuum of renal care or wellness. Right, when you have that kind of approach, you typically that's what really yields, you know, the best outcomes.
Speaker 1:That is exactly right. What you're doing when you work in that space is you're you're fixing this sort of your little, this little corner, big, big, expensive corner. But you know this little corner of the health care world because, in general, us health care is fragmented and disconnected and it's not patient centric. No, it isn't expected. And it's not patient centric? No, it isn't.
Speaker 1:I mean, I just I mentioned earlier that I saw physical therapy today because I have a tendon that's unhappy and I have a different issue with a different. That's a leg tendon. I have an arm tendon that is also unhappy, so I need to see OT for that. And I went down to make an appointment with a doctor to get a referral to OT and they literally are like, okay, well, you saw this doctor the last time.
Speaker 1:I'm like, yeah, he was great, this was for the hip tendon and he's like, well, but this is an arm and have to see a different doctor because it's an arm. Like, seriously, they're both orthopods and I was like, do I need one for the left arm or the right arm? Right, wow, but what you're doing when you have a team approach, when you follow people over time, when you use data to track how people are doing and to identify people who are at risk, and then you intervene to get them the information that they need, to find their motivation, to get them on board, to be actively engaged in their care. You're fixing what's broken in healthcare and you're allowing them to have the life they should have, absolutely, and isn't that what it's all about?
Speaker 2:Yes, if it's anything, health care should embody caring. Yes, and it should be personal, should be personalized. It's not anymore, but you know folks like you.
Speaker 1:What is more personal than than healing has always been a personal thing yeah, really absolutely well.
Speaker 2:and you know, for folks who are, because I know, because personally, because I've developed a lot of teaching tools and patient education material and I also know that you know to your point, there's so many good things out there already. It takes a lot of time to reinvent a wheel when you could just partner and share somebody else's wheel.
Speaker 2:So tell me a little bit about you know, for folks who are looking for a partner in developing their educational material, you know how do you come alongside? Because I think you offer pretty robust support in that department as well. Pretty robust support in that department as well.
Speaker 1:Yeah, well, what I think a lot of people when they think about MEI, you know that parable of the blind man and the elephant, you know, like they're all none of them can see. So one of them's up against the side of the elephant oh, an elephant is very much like a wall. And the ones by the tail it's like, oh, no, an elephant's like a rope, and one's by the leg, it's like no, an elephant, it's like a tree trunk. And I feel like that's how people view mei. They're like, oh, and I only they. They do school, yeah, and I open the core curriculum and everybody's got one little piece and nobody sees the whole. And we kind of know that and we're we're working on on trying to address it.
Speaker 1:But people work with us in all different ways. And what a lot of people don't know is that because we develop all of our content and we own all of our content, we can license all of our content and we can white label all of our content. And we are, you know, we think that our things look nice, but the reality is we don't actually care how they look. You know, if we do a booklet and it's orange, and we do have a booklet and it is orange, but your brand colors are blue and purple and you want a blue and purple booklet, by all means license the content, make it look however you want. We would ask that the diversity in images be kept. It doesn't have to be our images, but we think it's really important that everybody who look at kidney education materials because kidney disease affects everybody People should be able to see themselves. So what we don't want is, you know, materials where everybody looks like you and me.
Speaker 1:You know there's all kinds of people in the world, but, you know, short of that, our mission as an organization is, as a nonprofit, is to help empower people with chronic disease to manage, improve their health. Does that mean an orange booklet has to stay orange? No, it doesn't. But it does mean that we want people to get the content that we need. We know that they need to get past the emotions, find their source of hope, figure out what drives them and learn what they need to do to manage and improve their health well, and to be able to, to partner with a company like mei for peer reviewed, you know, validated and uh, you know, readability, uh, right levels appropriate readability six paragraph by paragraph, unless it's fifth grade, like the decision, and that's so hard.
Speaker 2:I think I'm writing to a, you know, third and fifth grade level and you put it through the tool and I'm like I'm writing at grade 14.
Speaker 1:It's not great.
Speaker 2:And it's not.
Speaker 1:Well, that's actually my comfort level is right about there. Also, you know, I have a master's degree. It is a discipline to teach yourself how to write at this other level. Yeah.
Speaker 2:You know, and it doesn't mean that you're dumbing down content at all- oh no, people are scared, they're not stupid, right, absolutely Right. But people with diet it's hard when they're, our kidneys fail. Well, people come from all different kinds of backgrounds as well, and socioeconomics, social determinants of health. We know that plays a huge role and just the process of kidney failure means that you know it's difficult.
Speaker 1:The brains are not working as well as the brains once did right, yeah, and people aren't in college, they're in life.
Speaker 1:True you know, over 35 years of of writing patient education materials, I've had exactly two people complain that they were too easy and they both had phds and I just kind of laughed. Like you must know, with a PhD, that very, very small percentage of the population has PhDs. We're not going to write materials for you, we're going to write materials for everybody else. You are welcome to go to PubMed and look up all of the published, all the clinical articles you like, but we can't expect that everybody will be able to do that, and so you're not our audience, sorry.
Speaker 1:yeah, well, I still laugh at that yeah, well, it's a great point.
Speaker 2:So how do people uh get in touch with you? If people have questions or want to know more, or people want to, you know, find out how they can best incorporate your services, how do people find you?
Speaker 1:I mean, anybody goes to meiorg, there's a contact form. Actually, anybody goes to any of our websites, there's a contact form, and the contact form, the email address, is info at meiorg, and all of those emails come to me. Lucky me, I get lots of emails. They all come to me and then I will forward them where they need to go. You know, where do I get 12 copies of the core curriculum? Oh, I will send that to Karen. Karen will make sure that they get hooked up with 12 copies of the core curriculum. But yeah, that's we're fairly easy to find.
Speaker 2:Pretty awesome and I know you've got videos out on youtube. If you're on youtube or linkedin, you can find lots of resources there as well.
Speaker 1:But meiorg and info at meiorg, it's way easy to try and spell my name well, dory, I can't thank you enough.
Speaker 2:You're truly just a treasured person and a treasured contact in this field, and I so appreciate the work that you're doing, and thanks so much for sharing time with us today.
Speaker 1:I appreciate you as well and the work that you have done and the work that you are going to do, going forward and I am very interested to see what that looks like Me too. Yeah, I know, but yes, I have 100% faith in you, 100%.
Speaker 2:Oh, yay, I'll pay you later.