As both a medical practitioner and a patient, Lyfebulb founder Dr. Karin Hehenberger knows a thing or two about living with chronic disease. As a young girl, she was diagnosed with diabetes and went on to earn her M.D. and a doctorate studying health complications around the disease. This week, Karin joins Paul and Gina to talk about Lyfebulb — the online platform she built with Postlight’s help to empower those living with chronic disease.
Gina Trapani I love that you can just you can say that aloud and say “This is an insight I gained from the community that I didn’t have. And now I’m better and I want to give this to everyone else.”
Dr. Karin Hehenberger I never said I was a good patient. [Gina laughs] [music fades in, plays alone for 15 seconds, ramps down]
Paul Ford Hey, Rich!
Rich Ziade Yes, Paul?
PF So we published this thing called Catalyst, kind of like a white paper, but like a fun white paper, like a readable white paper about how to how to do digital transformation, how to get them to actually say yes to your big software project. That’s what it’s really about.
RZ It’s a great cheat sheet for anyone that is doing something big with technology. It’s free. You can get email@example.com/catalyst.
PF C A T A L Y S T. We didn’t even mess with the spelling, right?
RZ No, we’re not playing that game. We’re not playing games here. And back in November, Paul, we had an event, a live recording of this podcast.
PF Rich, I’m going to tell you, you you invite people to a webinar, you tweet it out, and you expect about three people to come.
RZ I was hoping to do this promo without saying the word webinar. But here we are. [Paul laughs] It was a lot of fun. It was kind of—
PF Yeah, more than 100 people showed up, the questions were great. You made a deck that erred on the side of being a little ridiculous, which is what everybody needs when they’re working for home.
RZ Yeah, nobody wanted to see bullet after bullet after bullet, right? It was fun. And it was it was pretty loose. And I think we shared a lot of good ideas. It was part one of a series around the Catalyst framework, right. And so the second part is coming up on March 4th.
RZ On March 4th at 1pm to 2pm Eastern Standard Time. We’re going to talk about gaining consensus and the power of design in helping gain consensus. But as these things go, we will go off the reservation, no doubt. So we’ll keep it loose and fun and bring your questions. It was kind of interactive last time. So it was actually very successful last time. So we’re excited to do this again.
PF I’m looking forward to it, because some of the questions are, throw us off our game. Like it’s actually fun. So come on and see if you know, sweep the leg, see what happens. We’re looking forward to it. So Rich, what people should do if they want the invite, go to Postlight.com and subscribe to our newsletter, and we will send you info on how to come to our event…webinar. Let’s get back to our podcast. [music fades in] Gina Trapani.
GT Hi Paul Ford.
PF How are you doing today?
GT I’m doing great! Rich is holed up somewhere working on a presentation or something. So I get to do the podcast with you.
PF Oh my goodness, what a treat What a treat. It’s not the same, it’s a little different. It’s it’s more friendly, people make fun of us that were a little too gentle.
GT I know. It’s true. They say when it’s Paul and Gina, we don’t go too hard. But we’re just kind, nice people.
PF You know, it’s just it’s been a long pandemic, everybody can just relax and we’re gonna be nice.
GT A little bit of kindness during the pandemic is a good thing.
PF So look, we’re gonna do, as everybody knows, and we like to make fun of it. This is a Postlight Podcast, it’s about Postlight, we market the services of our firms by talking about technology and platforms. Every now and then, we actually don’t do this with everybody, every now and then we bring on a client.
PF And the reason we do this is when the client we think really has a good, interesting, compelling, exciting story about how technology can change lives. And a lot of times our clients can’t come on, because their companies won’t let them just go out and talk. But in this case, we have an entrepreneur who is running her own firm, and has a really compelling story and is building a platform for lots of different communities of people with medical issues that are really challenging, who need community. And I think, let me throw it to you because you worked far more closely here. And then let’s bring this wonderful person into the show we can talk to them.
GT Yeah, absolutely. I mean, look, we build things for our clients. And I think that the way that we talk about the work that we do is by showing that work, and this is this engagement, and this particular bit of work is incredibly meaningful. It’s gonna be obvious how that is, but it’s also personal for me as well. Anyway, I don’t want to prolong this any longer. I would like to introduce Karin Hehenberger who has joined us on the show today. Hey, Karen.
KH Hi. Thank you, Gina. Thank you, Paul. It’s really nice to be here with you.
PF Oh, we’re glad you’re here. So first of all, Karin, what is this company, tell us what you do tell us what Lyfebulb is and tell people how to spell it. [Karin laughs]
KH So Lyfebulb like a light bulb but with life. But life is with a Y. Because that’s what a light bulb looks like. So and it has it has a lot of meaning to a light bulb. Light bulb is really representing innovation, right? It’s the Edison innovation. It brings light to life but since we’re very focused on healthcare and life sciences, we needed to bring life in. So that’s why we’re called Lyfebulb. So I co-founded the company now six years ago, and really with the goal to connect patients and patient communities, with industry, and those communities that serve patients, right. So it’s really like it’s a different kind of language that is spoken between patients, and those who are trained to serve patients. And with that, I mean, doctors, nurses, but also companies that manufacture develop, and market products that will help to treat patients. And I’ve always found because I come from both, and I can talk about my own story separately, but I come from both of those worlds, both the patient world as well as the industry in the scientific world. And it’s really remarkable how misunderstood, I think these communities are in the sense that the insights and the solutions that come from those who are living with the disease, are not always appreciated or leveraged the way they should be, to better serve those who are actually part of that community. And the same goes for industry. I mean, I’ve spent about 20 years in the biopharmaceutical industry. And most people who work in that setting are incredibly committed to serving patients. But they of course, do it for a profit. And there’s often a misunderstanding, or I believe that those industry are profiting off of patients. While I think in general, those individuals are really trying to help patients. So you know, we’re sitting in between, because we understand that without the patient insights and the solutions, we will not be able to serve them really well. And without the industry that has the resources and has the competence and the capabilities to bring better products to them, patients are not going to survive even. So as Lyfebulb, as a company that is new to the space and a company that is growing, we have said that we are not here to cure patients, we’re not here to find solutions that will remove disease totally. But we’re here to improve the quality of life. And to me, as someone who has lived with a disease for now, more than 31 years that if in my case, type one diabetes, I knew that the quality of life, the little things that seems small to maybe other people are really what makes the difference. So we say that if we can allow people to thrive with a chronic disease versus just survive, we have made a huge difference. And if I think about the two things that really became the foundation of Lyfebulb, for me personally, number one was this insight that as someone living with a chronic disease, it’s really, really important to connect with another person who also has a similar disease. So patients need patience, as much as patients need doctors or nurses, the insights and the learnings of what is going to come next from someone who’s living that journey, that’s, that’s really, really critical. And that’s not easy to find, if you’re just someone who lives in a random place in the world to actually find another person who’s similar to you was just a little bit further down the way in the disease journey. So number one, we need to connect people. Number two, the insights of the solutions, as I mentioned now from individuals with the disease are equally valuable as the insights and solutions coming from trained scientists. So that understanding that patients can be innovators is the second concept that really became the foundation of Lyfebulb.
PF So before we keep going we need to tell people what actually got built.
KH So what you helped us build—
PF Oh, good for us.
KH So you asked me the question what Lyfebulb was, and because you asked me that question, I went broader, but now that you’re asking what we did together with you, and we’ve really enjoyed that, that partnership for the past few months, almost a year now, is a specific platform addressing patients and individuals who are associated with organ transplant. So Lyfebulb as a company is involved in 11 different disease areas, however, we so we understand that we need to connect patients. We built our first digital platform in the area of organ transplant. So every year in this country, there are 39,000 organ transplants done, but there are also 20 people every day dying because they’re waiting for an organ transplant. So we need to do more organ transplants, number one. But those who have done organ transplants, they have no community have no way to connect with others and it’s not easy to enable that. So as Lyfebulb, we decided to create a community that was digital because that is important and especially with COVID we can can’t really meet live and you, Postlight, help us build this platform.
PF I just went there, so TransplantLyfe.com. And I’m divided into the kinds of the the categories are, you know, kidney, liver, pancreas, heart lungs, helped me understand this user a little bit. Alright, so someone who is has just experienced a transplant, we’re going to bring them into a website and try to encourage them to connect to other people, like, where are they in their life? What is, what is your user like?
KH Yeah, and I would go a little bit earlier even, I would say that the person who wants to get on this platform is someone who’s at end stage disease, okay, knowing that they may need a transplant, or they may have been told that they have to get a transplant to survive.
PF Okay, so they’re in line for a kidney transplant.
KH And I personally was in that situation, 12 years ago, when I was told that I needed a kidney transplant, otherwise, I would need to go on dialysis and have about five years of life expectancy. You know, that point in time, when you’re told that you need to go through an organ transplant, that’s when you want to connect with other people, as the as the first point of receptivity. If you, you know that expression, I mean, here, the patient really wants to connect with another person. During the journey of transplant, of course, you want to connect with other people as well. But that’s, that’s the primary point. So if you are being told you need a kidney transplant, heart transplant on whatever the organ is, it’s a organ transplant, you can go to our now transplantlyfe.com with a y. And you can find another person and you can find one person. So you can connect with we call it find a friend, which through filters, as well as algorithms can connect you with a person who’s similar to yourself. And that is not just another person is waiting for a kidney. And this is, I think, an important distinction, because 12 years ago, and I was sitting in the waiting room, and I looked around in the waiting room, everyone else was about 30 or so years older, was not working full time, it was not in the beginning of forming a family or what I was doing in my adult life. So I didn’t really see anyone to connect with that I would feel would be similar. But on TransplantLyfe, we can be coupled with a person, you can be coupled with a person who’s similar to you. So that’s Find A Friend. But of course, not everyone wants that just one on one connection. Most people actually would probably want to go in on a forum and say I want to talk to many people, they may not be exactly like me, but they may have something to share. So the forum is a very important place as well where people can connect and ask specific questions, post polls, or just start a discussion. And anyone who’s registered can continue with that conversation. And I think what you did very well, because as Lyfebulb, we knew a lot about the area, we knew a lot about transplant, we come from, you know, backgrounds of medicine and user experience, and so on. But what you did really well was to help us with filters and organization. Because in contrast to for example, Facebook, where this is in existence right now, most patients connect on Facebook through groups, we can on TransplantLyfe can be just searching for specific tags, not just the organ in particular, but also tags, for example, if I’m interested in kidney transplant discussion, focused on relationships, I can find that. If I want to focus on financial issues in general transplant, I can find that. So it’s it’s very easy to get into a discussion, focus on the specific area that you’re interested in and start joining and participating and learning and sharing.
GT It’s incredibly powerful to be in a space where you know that everyone has had this you know this common experience. And you know it Lyfebulb’s mandate that patients need patients, it feels like TransplantLyfe is that is like here’s where you find each other. You know, since we’ve been working with Karin and Lyfebulb, I spent, you know, a good amount of time in the site as it was in development. And once it launched, which was only a few weeks ago now, it hasn’t been live for a very long time. And it’s just it’s incredibly profound. I’m not, I haven’t donated an organ or received the transplant myself but and I’m going to use vague terms just for privacy reasons a close family member of mine received a kidney and other close family member of mine donated the kidney. This is back in 98. And it was just a very profound, I was in my 20s and a lot younger and dumber then, so I didn’t fully understand that how profound that act is it. Spending time in the site, there’s an area just for caregivers, I became so much more aware of all the things that my family member has had to deal with over the years and became you know, I just became so much more empathetic and aware and it’s it’s such a it’s such an incredible resource. So Karin, before you had TransplantLyfe, how were you connecting with other patients? How were you finding other people and like what were the needs he saw?
KH Yeah, it was very laborious. I mean, in the sense that we needed to connect from various different sources media channels, we have to find people on Instagram, Twitter, Facebook, LinkedIn, we went everywhere YouTube, we have as part of our business model, we engage with specific individuals who are we call them ambassadors, or agents or entrepreneurs, they fill different categories. But all of them have in common that they are either a care partner, or they are a patient. So they are directly associated with the disease. And they speak about their, their situation, their life is about their advocacy in some way. But finding them sourcing them connecting with them really depended on our presence on other social platforms. And also pre COVID, of course, we did a number of live events, we have done more than 40 events in the New York area where we invite different kind of patient groups. But we didn’t have a way where we could capture patients and keep them on a platform that was our own, which is, of course, so much more advantageous, not just because we can now source patients directly from TransplantLyfe, for workshops or surveys, and, you know, even clinical trials in the future. But also we can find out more about these individuals. And what we’ve noticed already in just a few weeks that we’ve been live, is that there’s certain topics that seem very general, you know, if you’ve had a heart transplant, or a kidney, or an intestine, or a lung, or you know, pancreas, they all seem to feel similar things. I mean, I could speculate this based on my end of one. But you know, as someone who’s trained scientist, I’m not going to base my whole, you know, business on an end of one, so much of what we do going forward is going to be based on this database that we have created and the interaction and the real world data, which by the way, in our space, in life sciences, is being valued more and more. I mean, the FDA now is really requesting real world data for trials that are pre registration, not just market trials, or post marketing trials.
GT As you’re building the site, and I’ve watched, I’ve watched your activity on the site, you’re really active on the site and interacting with a lot of people there. I often wonder like you’re a medical professional, and you’re also a patient yourself. And I wonder, I have always wondered how you split your how your brain splits in those in those ways. And I think that you’re probably better at both of those roles, because you are both of those things.
KH Yeah, but it’s complicated. It’s very complicated. And I have, I mean, I chose for 20 years not to split them, but to be totally focused on medical and not involve my patient portion at all. I mean, no one knew I had diabetes for the first 20 years with my disease.
KH And that was clearly on purpose. I mean, I did my PhD in front of 100 people, and no one who had diabetes, and my, my thesis was on diabetes. So I left it because I felt that the bias would would look bad for me, and but I realized very, very dramatically what a mistake that was, and it hurt me as a person. But it is still very important to keep those kind of separate. Because when you speak to a patient, when I speak to patients, I need to be a patient. But then with certain people, I need to also have a sense of credibility and respect. And but when I speak to industry, I can convert the patient language into something they will understand. It’s a tricky balance sometimes, but I feel much more fulfilled as a person now that I can be both. I’ve come out as a patient.
GT I was gonna say, you have, I’m curious what, what was the thing that made you change your mind?
KH Well, I was not self, it was not by my, I didn’t choose that, I got so sick after 20 years with a disease that I had to I had to let everyone know, I had diabetes, and I not only had diabetes, but I had failed my diabetes, because now I have kidney failure, I had eye failure, I had every failure. It was pretty dramatic. My expertise was the complications of diabetes, meaning eye disease, kidney disease, and now I had to tell everyone that I had all those complications. So it was it was tough. But there was no choice. But after I had to come out with it, I realized that it was much better to actually be honest. Because when you hide something that is so fundamental to yourself, you become you have a shield when it comes to everything. I’m much more open now about everything, which everyone on Postlight and also Lyfebulb will know, I mean, I’m pretty much honest with my feelings.
GT Yeah, it’s great!
PF We’ve noticed.
GT It’s awesome. I love it. I mean, I think it builds your credibility with your patients.
KH It’s so personal to me, it’s so personal to me that it has to be very clear because I’m not wasting my time. I mean, my father gave up the kidney and this young woman who died to give me a pancreas, I live every moment. I can’t waste on nuisance.
GT But your story is very powerful and a part of the community. And I know you said you kept it to yourself because you wanted to maintain credibility amongst your peers. I think because you experienced it you build, you know, credibility amongst other patients and amongst your users. Tell us a little bit about your background. Tell us your story for folks who are just hearing about Lyfebulb and TransplantLyfe right now.
KH So, I was diagnosed with Type One Diabetes. as a very young person in in Sweden where I grew up, and at the time I was, you know, very active young individual had no issues. And when I was diagnosed with Type One Diabetes, I made the commitment that I was not going to tell anyone, it was not going to hurt me. And I was going to become a medical doctor and find a cure for diabetes. So I went from being a pretty successful tennis player to being, you know, going to medical school and doing my PhD in record time. But I never acknowledged the fact that I had the disease. So I spent time as a, as a medical scientist came to the US to do a postdoc at Harvard, and in the area of diabetic complications. And then I worked at McKinsey at the hedge fund, I worked at a startup that went public, and spent time at Johnson and Johnson as the head of metabolic strategy. And then everything collapsed, I got very sick. And I realized that the way I had spent my my life, especially the past 10 years, were very, very negative for my own health, it got me to change my behavior to a certain extent to be much more open with my own limitations that I could see also, sometimes, you know, a disability can become an ability, if you let it, let it be that. And it opened me up in a way that I think it gained, I gained friends that otherwise saw me as a little cold. And it also gave me actually a view of more opportunities. And I also realized that a person who had all these resources, all the knowledge in the world could fail like I did, I failed. If I look at myself on a curve of how people with diabetes can live, I had failed. So if I can fail, then it’s really hard to live with a chronic disease. So when I decided to take the steps to move from being in a much more protected space working for a company versus starting a company, I wanted it to be about something that I think that I could make a change in. So it took some time to build a team to understand exactly what our sweetspot would be, what the gap was. And I realized that if I could try to scale my own experience, which was so when I failed in my disease, I had to, to get my life back in a way, I had to go through a kidney transplant, which I did now, 12 years ago, nine months later, I had a pancreas transplant, which was a much bigger surgery. And then I needed a pacemaker to address my nervous system that regulates the heart. I kept passing out which, which could hurt you, of course, quite dramatically. And there were many other things that I needed to just address health wise. So eventually, after, I would say three years of going through this, I was strong enough to and wise enough. I mean, the combination of age and failure, I think really helped me. I would say I was thought I was invincible, and I clearly wasn’t. But it gave me wisdom and a passion and a real motivation to help others. So with Lyfebulb, I mean, our main goal is to empower patients, you know, I had seen what it was like to be a patient in a system where the patient is so weak, you’re always told what to do, you are the one who knows the least, not just about the disease. In my case, I knew a lot, but you don’t know the process, you don’t know what’s gonna come next. And the more we can educate, the more we can build, by the way, our platform in a smart way. We want patients to know, this is the next step, if you don’t do this, and this is the step if you do that. So when you join TransplantLyfe at a certain portion of the disease journey, if you can project your journey through an avatar or through a persona, and then see what it would look like over time, and game it out. I think it will motivate people to change and to improve their behavior. Because a lot about chronic disease, I think is about behavior.
PF And you know, you describe this sort of this point of kind of personal collapse. Even though you were in a position to know more about your own health than almost anybody else on Earth. You couldn’t see a clear path, you had to you had to sort of reboot your entire life. And so, at some level, this platform is designed, like right now if I come to it, it’s very conversational. The conversations are already blooming very rapidly. There’s a lot of a lot of growth here very quickly. But at some level, you want people to come in and not just have conversations but also see a plan and start to adjust their behavior in their life based on outcomes that are possible for them that they may not even know about, or that their doctor might not tell them about.
KH And the doctor may not know. So I think that the power of the crowd, the power of data that we can distill from this, and the ability through technology to build future plans for an individual, which I think I think even though everyone thinks they’re special, but I think we can build out certain personas, and and create these journeys that you can put yourself in, and you can see what you have to do to stay on that journey. Because if I had been told, as a 16 year old, that if I do this, and this, and this, I will end up with a kidney transplant and a pancreas transplant 20 years later, you know, I would have made other choices, especially, especially because it’s not just about the technology, it’s also the combination of knowing the future, or at least predicting, projecting the future, with a hand held, someone to hold your hand. You need that person who can come with you and work with you to change your behavior.
PF Why isn’t that part of the medical profession? Like why didn’t the doctor sit down with you 25 years ago, and stay “Karin, let me tell you some of the things that that you need to know as you’re planning out your life.”
KH Because I’ll tell you why, they’re very scared of doing that. Because doctors, first of all, doctors don’t have much time right now. I mean, the doctor of today versus the doctor, when I was trained, I mean, I sound very old now. But when I was trained in medical school, it was kind of the tipping point, those who trained me were great doctors. Among my generation, I think were some good, but most of them are in this cookie cutter medicine, where it’s just doing a job. And being a doctor is not a job, it is a calling in my view. And it’s not taught that way anymore, I think we don’t have the time, they’re not reimbursed for it, meaning they don’t get paid for it. And money drives absolutely everything, even medicine. So they don’t have it. But then going back to my first point, which is they’re afraid of doing it. If I’ve been told that if you don’t do that, you will lose your vision, if you don’t do that you will have a kidney transplant. They tell me that. I mean, they did tell me, they gave me pamphlets, I chose to not read them, and then I dug very deep because I became an expert in it. But I separated that from myself. If I had had an older, similar girl at the time to tell me, you should be open about this, you should be doing this because otherwise, this is going to happen. Or even better, if you if you go with me and do this, you will look like that in 20 years, you will be fine, you will have had a child, you will have, you know, you will have had a family. I think that the positive reinforcement, and the future projections that way and making it seem like it’s it’s actually part, it’s not just being normal, you know, I’m now going to the fundamental part of it, because I think someone with a chronic disease, they feel alone, they feel different, they feel less than the normal person. But if you ask a normal person, they will have complaints too, “Oh, I’m a little too fat, I’m, you know, I’m losing my hair,” you know, everyone has a problem. And you know, if you have diabetes, you just think you’re that it’s the worst problem in the world, because you have a malfunctioning pancreas. If you speak to someone who’s Multiple Sclerosis, you know, can no longer walk or or you know, can’t see properly. They think that’s the worst. I think showing the different projections and showing that we can all kind of accommodate to a certain lifestyle in a in a way that is still very productive, that meaning the empowerment of the patients is going to make it more more livable.
PF So in your plan, right, you’re going to have you’re going to have an ability for people to interact, and then you’re going to actually be able to help them explore different life stages and share knowledge in a very sort of, like structured way. You know, I’m looking at TransplantLyfe right now, earlier, we talked about social media and big conversations. It feels like also doctors should be learning from this, like they should be coming in and reading these conversations in order to understand their patients.
KH I mean, doctors, doctors are trying to get into Facebook groups, right. And I mean, I’ve gone to medical conferences where they even talk about it openly where they pretend to be a patient. But those are the doctors who care. You know, a majority of doctors unfortunately do not. They don’t take the time to do that. But I agree with you doctors should go into these conversations, good doctors will. But what we can also do because doctors have very busy lives, and it is a tough, tough profession, because sometimes you have to be able to turn off, right? As a physician, when you’re constantly hearing about the miseries of the disease. If you’re then taking your free time to also read more about patients. That’s why I wanted to steal the information a little bit for the doctors and that’s why if we can do do a research papers, we can do studies we can find on TransplantLyfe, the nuggets that the doctors need, so they don’t have to plow through this, when they need their time to reboot as well. So I think that’s up to us and our partners. And that’s why it’s so important for us. We just last week announced the partnership with Trio, which is the biggest patient organization for transplant patients.
PF Congratulations. I didn’t know that. That’s great.
KH Yeah, that’s it’s really important. That, of course, with our partnership with CSL Behring, which is one of the big transplant companies out there. And our goal is to build this platform to be very strong, and with our partner CSL Behring. But eventually, I would say in five years, we’d love all companies to be part of it so that we can learn more and can give this information to all the companies that do research and marketing in the space of transplants so that we can get better products all around.
PF But this is what’s interesting with digital platforms is that the, there’s so much that conversation exposes. So you know, that is, to me, the exciting part of platforms like this is like that, that knowledge starts to surface in a conversational way. And so, so now the next step is to keep building that community, but then also find ways to add structure and order around the knowledge that’s emerging for the community.
KH Structure as well as how do we actually isolate those points, right? Because right now, it’s small enough for us to manually see it. But you know, we hope that there will be 1000s and 1000s of patients on it. And it’s not going to be possible for me to go through it every night and say all “Oh these are the nuggets.”
PF No, you’re correct, you’re weeks in, but you’re gonna have 1000s and 1000s of users because I mean, this is just such a, people need to feel less alone. That’s incredible. That’s why Facebook exists, right?
GT Yeah, it’s gonna grow. There’s gonna be scaling issues, and I know there’s there’s great moderation now, it’s a very good tightly knit community, but it’ll it’ll grow, it’ll face all the things like communities that grow have to face.
PF I mean, if you need a technology partner, you should talk to Gina. She’s good. [Gina laughs]
GT I have to tell you, it makes me feel so much better that like, whenever I realized that I’ve been doing something wrong, taking my poll at the wrong time, or not catching the fact that I’m, you know, that this part of my health isn’t going well. And I’m like, ah, like, this is my, um, you know, not adulting well, I’m doing a bad job. I feel like a failure, I feel better that that is also a work in progress. And a cycle of continuous learning for you, as well as you are in the medical profession!
PF Doctors are not famous for being good patients. That’s not—like having known a couple doctors—doctors are there many wonderful things, but they’re, they’re famous for being terrible patients.
KH Very bad patients.
GT I want to ask, I actually want to talk more about this question of scale. And as the community grows, and I mean, right now, it’s very obvious to me even spending just a little bit of time on TransplantLyfe, that if anyone that I know that has had a transplant, or if there is a care partner should go there instead of Facebook.
KH Or a donor!
GT Or a donor. Yes, yes. Because there’s so many pieces to this to this puzzle. Are you current? Are you going into Facebook groups and saying, “Hey, come over here, it’s way better over here!” How are you articulating? You know, this is this is actually a better place for you than Facebook for the following reasons?
KH Yeah, I mean, I can’t do that on Facebook group saying this much better than Facebook. But I can say that there are things on it that don’t exist on Facebook, for example, the one on one connections, you can’t do that on Facebook, you there is no journal on Facebook. I mean, the journal function is something that we really believe is going to expand. And it’s going to be very important. I mean, that, it’s talking about empowerment. When you go to your doctor and you go maybe twice a year, so as a transplant patient, and you say your doctor “Oh yeah, I had a really difficult few months because I my gastrointestinal system was really upset.” And they say, “Oh, okay, but you labs look good. So what’s the problem?” So that was really bothers me, if I could come in there and say, look, I had diarrhea 10 times a day, for the past three months, the doctor will say, “Oh, yeah, that is a problem, I may need to treat that.” You know, having your data in your phone and being able to show it to your doctor or to whoever it is, your spouse, I mean, really showing that this is how I feel that may be why I’m not treating you so well right now. It really gives you power and validation for your behavior in some way. So you’re at least your feelings, you should never validate bad behavior. But that’s number one. But also the journal will give us more insights, talking about nuggets. I mean, if we can isolate some of these qualitative as well as quantitative numbers, that really will benefit us in our research into the space. And eventually, of course, we will also be able to package this to companies that are interested in developing new products or assessing their existing products. I mean, one thing that we would like to do on the technology front is to be able to have different kinds of logins, right? So that say that we have a trial of 100 people and those 100 people should log into the separate way have separate entrance, so that we keep them from the the overall TransplantLyfe, and I think that’s possible with Postlight’s help. And to make it very clear.
PF We will get right on it. What happens when someone shows up and says, “You know, you don’t need any any of this, you can simply inject yourself with tiger blood. And your pancreas will be just fine.” Like how—and I think in a general sense, like this is people sharing medical information and advice, like how did you structure things so that you’re protected, so that users are protected?
KH Yeah, that’s a big, that’s a big fear, of course. And that is what’s happening on Facebook, by the way. So that is a reason why we’re doing TransplantLyfe. And the way we’re doing it, we have heavy moderation. I mean, we have, of course, keywords that can’t be used that are immediately rejected. And we have observation, we have individuals who are monitoring these conversations. We have guidelines that we have set up, but people of course, don’t always follow the guidelines. You’re supposed to be courteous, you’re not supposed to swear, you’re not supposed to harass people. And when it comes to that, that’s basic. And I think that’s probably true for many new platforms. But the advice that you’re talking about, and that’s a balance, because, you know, advice, such as “You may want to eat some crackers when you’re taking these very toxic drugs, because it will help your stomach.” You know, that is somewhat medical advice. But it’s not, that’s not dangerous. That’s actually just positive practical advice that, you know, I took when I started, I didn’t get it from my doctor, I got it from another transplant patient. So you won’t be so nauseated, if you need this. So that we encourage, we even have conversations about it in the forum. But medical advice is not just discouraged. It’s not, it can’t be on there, we do not take any kind of responsibility for treating patients. We are not—but our database, as you built for us is HIPAA compliant. And so that’s protected. It’s AWS, and it’s called Dynamo, I believe.
GT Yep, that’s right! Nice, there you go!
PF We’re turning you into a platform engineer. [Gina laughs]
KH No. [Karin chuckles] I’m not an engineer.
PF This is a funny thing in our industry, right, which is that people act like HIPAA compliance is a secret journey of mysteries. And very often, it’s just using good cloud technologies that have already been evaluated and found to be compliant. And so that’s great. That’s really good. So TransplantLyfe, I mean, actually, there’s a number of different conditions covered on the site related to transplant. But I know this is from the beginning, from the first conversations we had, this is sort of just, this is just the beginning. Where else do you want to take the platform?
KH So we see this as a platform under an umbrella platform, and we call the UmbrellaLyfe Connect. So Lyfebulb Lyfe Connect, and Lyfe Connect should be the umbrella word for Lyfebulb’s digital platforms, and TransplantLyfe is the first one. It’s personal to me. And it’s also where the community is really lacking. But we hope that we will be launching two or three other platforms this year, in the areas of inflammatory bowel disease, Crohn’s and Colitis, hopefully, in Multiple Sclerosis, and maybe even in rare cancer. We’d like to also be working in mental health and in diabetes, which is my original disease. So the goal is to create platforms for all these kind of communities and have specific tangents as well addressing the caregiver. Right now caregiver is incorporated in the TransplantLyfe platform, but having specific tools for caregivers where they don’t feel any guilt, you know, complaining or getting help for their specific issues. So, you know, although TransplantLyfe is part of the family life connect, we see as Lyfebulb, that we will be building other digital products, in addition to TransplantLyfe. And that’s, that’s in the pipeline already.
GT That’s fantastic.
PF It’s worth noting, part of the work that we did is is making this scalable that way. That was one of the things you asked for, which is—
KH Exactly. So now we can add to, and there will be some some variations because the different diseases are somewhat different. But the more we study the patient connectivity, the more similar we all look, individuals with chronic disease all have similar wants and needs.
GT This has been fantastic, Karin. I’m so glad you joined us on the show. You’ve been on a hell of a journey in your life, but certainly founders journey. If someone’s listening to the show, and they want to keep up with Lyfebulb and know when those new, those new versions of the of the platform are going to launch, what should they do? Where should they go?
KH Well, our main channel is Lyfebulb.com. So that’s like a light bulb with life and with Y. Our TransplantLyfe.com is the specific transplant oriented digital platform. We’re also very active on social media. So again, it’s Lyfebulb on Instagram, Twitter, Facebook, LinkedIn. And if you want to reach me personally, I’m KarinLyfebulb, now on most of these channels, and so you can reach reach out to me personally as well. But that’s the best way to keep in touch with us.
GT Great, well, we’ve absolutely, we’ve loved having you today. And we’ve loved working with you. And I look forward to working together some more. Thank you so much.
KH Thank you. This was a pleasure.
PF Thank you.
PF I’m gonna tell you something Gina, I would not want to be on the other side of Karin. I feel that if she is going to do something, she’s going to get it done.
GT Oh, she’s gonna get it done. Yeah. Oh, yeah, sure, sure, yes. When we started working this, I was like, “Okay, we got to get this right.” [Gina laughs] Or else. Because this is gonna happen one way or another with or without us. So it might as well be with us.
PF The other lesson here for me, and I’ve learned this in different ways over the years, but you can really see it here is that the internet is the great engine of making people feel normal. And sometimes, you know, we often talk about that and sort of like bad, like, you know, people kind of on the forums, and they, they’re planning evil things, and it’s awful, but there is still that core element, which is, “I feel completely alienated from everyone because I have a fundamental health condition that nobody shares and it’s completely wrecking my life.” And then you find that forum and suddenly you’re normal and you can get a plan.
GT I mean, at its best, the internet is a an empathy engine and a knowledge engine. I can learn more about myself through total strangers on the internet than anywhere else. I mean, it truly is at its best.
PF I like building empathy engines at Postlight, that makes me feel good.
GT The world needs more empathy engines.
PF We’re very grateful to Karin for coming on. And yeah, if you need us check out Postlight.com but actually more than checking out Postlight.com, go to TransplantLyfe.com and see what was built, because it’s at one level, the classic forum, but at another level, you can see there’s a kind of layering of the platform really designed around creating a safe, moderated experience and that is fascinating work for us.
GT It is truly a model of a great community and 2021.
PF Yeah, that’s right, lots of moderators, and helping people feel safe and sane. Alright, let’s get out of here. Let’s get back to work.
GT Thanks, Paul. [music ramps up, plays alone for 3 seconds, ends.]