Threading the Story in the Data with Senan Ebrahim

Featuring Senan Ebrahim, President of NDWA & Executive Director of Caring Across Generations

English [00:00:01] We can't fix the world alone. But collaborating isn't easy. And systems are allergic to change. So how do we do it without losing our damn minds?

Jeff [00:00:11] That's what we're here to find out.

English [00:00:14] I'm English. Saul.

Jeff [00:00:16] I'm Jeff Walker. Welcome to System Catalyst, the podcast that cracks the code for making the world a better place.

English [00:00:28] Hey, Jeff.

Jeff [00:00:29] Hey. English. How are you?

English [00:00:30] I'm doing good. You sound a lot better than last time we spoke. How are you feeling?

Jeff [00:00:35] I'm better, for sure, but still got a little bit hoarse voice. I had the flu and my whole family did. And my grandkids, you know, did. It's like. It seems like it's everywhere.

English [00:00:46] Definitely. I was just talking to someone just about how much school my kids have missed. Just because they've been sick or we've been sick or I think they've been to school collectively a whole maybe one week in January because everybody's been sick.

Jeff [00:01:00] Yeah. You know, it makes me really appreciate our health system, where you can just go to the drugstore and get some Tamiflu from the doctor. You and I and our experience in Africa, in health care, there is harder to access. I can't imagine it for refugees. I think it's the subject of your interview today, right?

English [00:01:19] Yeah. I'm really, really excited about this interview today. I was able to interview, Senan Ibrahim, the co-founder of Hikma Health and the CEO of Delfina. And he is a really wonderful guy. And as you know, I'm a data nerd and he's a data nerd. So we really got to talking a lot in this episode about data and access to data and how we can better use data to really enable better health care for people.

Jeff [00:01:47] Well, particularly refugees. Right? There's 75 million of them out there and growing dramatically, sadly. And they stay in these camps for over 20 years on average. So you got to have a health system to support it. So great. He's building that organization to do that. Tell me more about how he does that.

English [00:02:07] Yeah. You know, he really walks us through the process in this episode and, you know, talks a lot about not just building the technology and really trying to enable better access to care and higher quality care. But, he also talks about a really inspiring and heart wrenching trip to a refugee camp in Lebanon and everything that he learned there. And I think one of the main things that I, you know, pulled out of that interview is that the data is so important and having high quality and just really robust data infrastructure, but also it's about pulling out the story from the data and the humanity that exists within the numbers and within the technology and and ultimately what it is we're trying to achieve with providing health care.

Jeff [00:03:01] That's great. And and I know one of the other points I heard about him is that he spent a number of months looking at the system, actually interviewing people before he actually created the app and created his answer, which I think is an important learning point for us to really listen better to what the problem is before we jump to the solution. Sounds like he went through that, so I can't wait to hear about it.

English [00:03:27] Yeah, it's a really good one. Here's my interview with Senan Ibrahim. So soon on. You're a physician. You're a data scientists. You're an entrepreneur. You're a dad. You like so many other things. What made you want to pursue these areas? And B, tell us about how Hikma Health kind of evolved in that pursuit of wearing all of those different hats.

Senan [00:04:02] Yeah, I'm really grateful that I got to work and continuing to work at the intersection of a lot of really dynamic fields, and I'm grateful that I was just born in a certain place in time, right? As a physician. Now, there are all of these opportunities to engage deeply with software based technology as a lever for change in a way that, frankly, wasn't even possible 20 years ago when I first started out my career thinking, I'm going to be, you know, a practicing physician. I didn't realize the extent to which these technologies would transform my ability to make change. And Hickman Health had a very, very special role in my life and my arc as a physician and scientist, where I realized we can actually democratize a lot of what's currently already being done here in the United States and elsewhere in other high income nations, and bring it for the first time to people who need it most. Whether that's in refugee camps in Lebanon or, you know, migrants serving clinics in Nicaragua or, you know, the refugee camps in, you know, Cox's Bazar in Bangladesh, we have a real opportunity here to bring the technology home to where it can make the most impact. And then, you know, bent the arc of my entire career where I ended up actually not practicing clinical medicine, which had actually been my decadeslong intention, and forging a career at the intersection of health care and technology. And as I think about the future, you alluded to the fact that, you know, you and I are both parents, very grateful for my little one who's just rounded the one year mark and thinking about what the world will look like for him and what the world that we now have a responsibility to create for our children, making sure they have, you know, access to health care, access to responsible technology, particularly with, you know, the the eye wave that we're seeing going on right now. And as you and I have discussed more recently, the kind of habitable environment that will enable all of that health to come to pass. So really grateful to now be, you know, entering this phase of my career where I'm able to make an impact at the scale of now, you know, with the help hundreds of thousands of patients and aspiring to impact millions of patients with the technology that we're creating.

English [00:06:15] Senan is combining his medical and data experience to help alleviate the health crisis in refugee camps across the world. When asked why this issue in particular, he often refers back to a story about a refugee called Hassan.

Senan [00:06:31] He was a, an eight year old Syrian boys now in his teens, and he moved from Syria to Jordan around, you know, 2015, 16, middle of the Syrian civil war. Turns out he had type one diabetes. Nobody actually realized that when he was living in the camp in Jordan. And he kept presenting with these, you know, systemic symptoms like fever and just a runny nose and like, lethargic or just feeling lethargic. And so his family had no way of really knowing. And his providers, when he would show up to the camp clinic would say, oh, I think you're just you've got a bit of a head cold, just, you know, go home, you'll be fine. That happened multiple times before. He developed a much more severe crisis, a diabetic ketoacidosis crisis, which is a life threatening complication of diabetes. And eventually, you know, he presented to a Jordanian hospital where thankfully they reversed it and he ended up being okay. But it really the his story has been shared very publicly in the on the front page of the New York Times article from about 5 or 6 years ago. And that was what we realized. That is who we have to solve for. We have to be able to if we're going to give any level of insight, whether that's simple data as a picture, a summary data panel, which is what we provide right now, or some kind of AIML based analytics, it all has to just work for that first clinician. But let's say it was a member of the nursing staff who saw him in the camp clinic and triaged him so that you would triage it correctly. It has to work for the physician who should have seen him, and the physician who did see him in the emergency department. They should all be looking at the same story. That should have pointed to the possibility that this young man has type one diabetes.

English [00:08:16] That's a really powerful story. To make sure this kind of oversight never happened again. Senan and his brother Hassan created an app that functions as a simple electronic health record, commonly known as an EHR. Basically, it stores or refugee's medical information that a doctor can then reference to provide the right care.

Senan [00:08:41] So what we built is basically this are Hikma Health 1.0 system that's live is free and open source on our GitHub. Anybody anywhere can download an and activate it. So what it is is basically a free and open source offline first year that works in multiple languages with lightweight, easily customizable workflows. So it is designed to fill the gap of about 50% of clinical settings on Earth today that don't have access to an Epic or Cerner, and it wouldn't be the right product to meet their need. So we wanted to create something that was versatile and flexible, easy to use with the understanding that these clinicians are not looking to replicate the burdens that we've created on our American health care system with extensive documentation for billing, but they're looking to create and capture data that is clinically impactful and useful for them to refer to in the future in the care of patients who will almost certainly be repeat visitors, especially in the chronic settings that we see with the refugee crises. And then as the needs of the clinic change, they don't need to put in a change request with some corporation, you know, a million miles away and they wait a month for to happen. They can drag and drop in their admin interface. Okay, now I need a Covid workflow. I like the default one from the W.H.O.. I'm going to tweak it with these three other questions like how much access do you have to sanitation, etc. which are most pertinent for my refugee camp. And I'm going to put out that 12 question workflow and collect that data on every patient that my practices in the next two months. So we really it was very rewarding to see that during Covid where, you know, our partners were able to use our lightweight interface in ways that we hadn't really even imagined, and to help potentially stave off the spread of what has been now the epidemiological challenge of our time by using some of that data.

English [00:10:36] Well, the workflows piece is so important because if I'm a patient and I'm coming in and my provider has, you know, access to my house EHR and they have that and that's what they're using and they're like, okay, I've got a 33 year old white female versus a fibrosis who has X, Y and Z. There's specific questions that that provider needs to ask based on either if they're screening for Covid 19, if they're screening for malaria, if they're trying to understand my health background, if they're trying to deduce whether or not they need to put me on a certain medication, hey, maybe I'm pregnant and they need to figure that out, right? Because they're not going to do certain things. If all of a sudden they find that piece of information out in our interaction. And so we're talking about getting the right data at the right time to make the right decision. These workflows are so important, and we expect so much of our providers to be able to have every iota of health information and training and being up to date, all of that in their head at one time, and having a partner, having a technological advisor, coach, you know, something right there to be able to say if this, then that changes the game. Because the stakes are so high here. Senan wanted the app to be as practical and effective as possible, so he and his brother Hassan visited a refugee camp in Lebanon to learn what doctors on the ground actually needed from them. The experience was eye opening.

Senan [00:12:31] This is like right around New Year's of 2020. And, you know, we had been fortunate to work with partners throughout the region and had other visits, but that was actually a very impactful visit, in particular because of, I think, the depth of relationship that we were able to build, in particular with one clinician who works with endless medical advantage. His name is doctor for us of about, and he is personal hero of mine. He is a Syrian physician who was practicing right at the Syrian Lebanon border, and was one of the last physicians that was able to be active practicing clinically. As you know, the town was shelled through the Civil War and he, you know, took it upon himself once he relocated with his family to Lebanon Valley, which is one of the poorest and most under-resourced parts of Lebanon. And where many of the refugees actually have an informal status. They don't have a UN refugee status. They don't receive the food stipend. They live in informal camps, ten shelters that are set up on agricultural land. And seeing how people live there, you're seeing people struggling to provide food and fuel and shelter that those of us in the data and technology world, sometimes we take for granted. You know, that was really eye opening as one clinician driving around in a van trying to serve hundreds of patients a day, I kid you not, hundreds. You know, we would consider 30 or 50 to be a high volume in the United States for daily look. Him seeing 100 or 200 patients is unheard of in the United States. So seeing that level of practice at that level of commitment and engagement, even if it's only 3 or 5 minutes with each patient truly trying to solve his, you know, the problem of the patient in front of them with the resources that he had. The way I think of him is more like a star athlete. I'm his coach. I'm his waterboy. I want to help him practice at the top of his game. Right. I want to see him be able to serve as many patients as possible with as personalized and proactive care as he possibly can, because that's what he's doing 16 hours a day. And if I can help him do ten, 20% better, that could be, as we heard from his patient, volume 10 or 20 lives every single day. That deeply inspired me and taught me that the product just needs to match. It needs to fit that use case, needs to work off line, needs to work in Arabic so staff can work with it. Needs to work in a one click setting where he can open it up very quickly. Record the data that needs to be recorded to fully appreciate the data story of that patient. And then when Covid struck, you know, two months later, three months later, that was top of mind for Hassan and I, that thinking about that camp environment where Covid was going to spread very, very rapidly. And so we put together our Covid module very quickly in about a week, with clinically validated inputs from MDH and others in order to serve, you know, doctor 11 and his patients and others like them. So it was just so instructive. And I would really ask any other social entrepreneurs out there that are solving the problems of our time to try to engage as much as possible. And now that, you know, hopefully post-pandemic, we can do that again in person, really visit, spend the night, stay in their homes if they welcome you, stay in the camp, stay in places where the patients actually are, drive around with them. Understand the nitty gritty of the problem because it will come back and be reflected in the technology in a really beautiful and empowered life.

English [00:15:52] I think you said something really important on that I want to double down on, and that is this. You and I, we have the privilege of living in this world of data and painting a picture and understanding intricacies and details and being able to capture the state of something, or even hypothesize about what the future holds through data, through information and what can happen a lot especially, you know, we live in the tech world. We live in the data world. We live in places where our needs are met and we can there can be a disconnect between what we see on the screen and what we see in, you know, our Excel documents or on our portals with the actual lives that are being lived and the actual people that we are getting that data and information from. And I think your point of saying, go be there, go see it, go understand, so that when you're looking at the data, you can read between, you know, the rows and the columns, and you can actually feel and see the human life that's occurring.

Senan [00:17:03] You know, I think this theme of threading the story in the data, that's that's really the that's what we're trying to do at Hickman Health, fundamentally.

English [00:17:15] As data plays a bigger role in health care, we have to remember not to lose sight of what really matters the patient. At the same time, data can be a really powerful tool for finding just the right treatment. I know this from my personal experience. I'm not sure I've actually ever mentioned this to our listeners on this podcast, but. So I have a disease called cystic fibrosis, and I grew up going, you know, into the hospital system and, and really being a patient. And there are these tests like when you go for a checkup and you have CF cystic fibrosis, there's these tests that you do. One of the main ones is called a pulmonary function test. So you blow through this kind of like pipe into this big machine and you like, it's like, take a deep breath and you blow it out as hard as you can. Almost like you're trying to, like, blow up a balloon with all your might. And through that test, a bunch of data comes on the screen, right? It measures your small airways and your large airways and your flow. Volume loop and all of these things. And that data was so indicative for me of how the rest of my day, week, month life was going to go right. If those numbers weren't exactly what the doctors wanted or what we wanted, it indicated some other change in course. It indicated a different trajectory of life and of my experience. And I wonder if if you seen on, have any of your personal experiences, either as a patient, as a physician of how that information you saw that connection and that information between human and data?

Senan [00:18:58] Well, thank you so much, English for for sharing that. I think seeing it from the other side, where being in the emergency department and seeing so many patients who have conditions that are first of all, the most frustrating thing is when we know them to be treatable. They have, you know, CHF, congestive heart failure. And we know that if they were able to have access to healthy nutritional food that was not high salt, they wouldn't be showing up fluid, overloaded, unable to breathe. Right. That was always the biggest frustration to me, knowing that we live in such a wealthy country with excellent hospital like technical resources and clinical resources. But the work that needed to be done was outside. So when I would see the same patient over and over again, like a month, I spent a month in the city and see this same gentleman come in 5 or 6 times for the same thing. And even more frustrating would be, and I can only imagine how the patient in their family would feel as a patient with a psychiatric diagnosis, whether that's substance related or otherwise. And they keep coming in to the Mass General Hospital emergency department over and over again, because that's the only place they can give care, whether clinical care or social care. And, you know, our colleague, Dr. Henry Ashworth, you know, is now our chief research officer. And my health, I'll never forget he taught me this. I don't know if I've ever told you this before, but we were in the E.D. together, and we had one of these patients. And I was sort of frustrated that, like, man, what are we even doing? What can we do? And he hands me socks and a blanket that he's been warming in the blanket warm. And he says, give these to the patient because that's something we can always do. And so I think Henry exemplifies the best of what an individual physician can do. But we have to empower people like Henry with more than socks, that blanket. We have to make sure when the patient leaves once when she walks out that door, she's going to have the resources that she needs socially, clinically and otherwise. And if we have that problem here in the United States, a high income nation can imagine what you know, the Post-discharge profile looks like for a patient with a chronic disease in a refugee camp, and let alone each one of those people has their own story. And we need to support those who are on the frontlines writing it.

English [00:21:15] How easy or difficult or what barriers have you faced with funding? Just funding of of Hikma Health and and really funding the movement of this of this system change work that you guys are doing?

Senan [00:21:30] It has been challenging because we're on a decades long project here, and we're in a space that usually gets instant attention after a natural disaster or the acute onset of a conflict. And then months later, people have generally forgotten about the conflict or the natural disaster. And, you know, from a donor perspective, the money starts drying up. What we're doing is also very novel. Typically, if you look at, you know, RFPs and grants and what they're looking for, it's not always for like building a technology system is that this is starting to change increasingly now, especially post-Covid. But when we first started, we thought, oh, we're going to set out to build an HR, a project that has taken tens of millions of dollars for some companies, and we're going to do it with a million or less. And how do we do that and make sure it's the best for this use case? It's totally secure. There's things that we're not going to compromise on. Then we have to go find the resource for us. You know, I would just say to all the social entrepreneurs out there planned for, you know, making impact on the timescale of a decade and don't, you know, just sort of like go all out and spend all the money at once. And so after we did our first cycle of development, as you know, English, when we first started partnering with you all, we actually had extra funding and we were thinking about how to most use this for the maximum impact. And instead of, you know, building some additional set of features, we said, how about we start a new model, which is what we called our Year of Migrant Health. And in that initiative, we empower clinics to directly just go for it. If the bottleneck is that you can't afford to, Google Cloud costs will pay it. The bottleneck is that you can't afford or find. Technical support will help you hire a local engineer. So I think looking to the future, I'm very optimistic that especially with our expanded vision and a renewed focus on responsible AI and ML for global development, I. We're in a position to substantially scale.

English [00:23:24] It's great to hear that despite the occasional setback, Sinan remains hopeful and even excited about the future. And I think that has a lot to do with a recent development in his personal life. Tell me about one thing that's surprising you about being a dad.

Senan [00:23:41] I think what most surprised me, honestly, English is just perspective on like, what matters. And there were a lot of things that even two years ago, like, I'm not that much older, but I feel like just a fundamentally different person. And I think, you know, it applies to work, but also just in my personal life, you know, if something doesn't quite go my way, like as long as my son is happy and healthy and fed and see him smile like that's that's really what matters most. And I think, you know, the bad days become less bad and the great days become even better. And in my work, I think it gave me a new sort of perspective and passion for, I think on a longer term timeline, you know, particularly things like environmental issues, which now I'm thinking more about, you know, the global challenges that his generation's going to face. It really puts the the work that we are doing together into a decades long perspective. And the importance is even higher. But the timeline, I'd say on the flip side, I think I have a little bit more patience for something that maybe will come to pass and make impact in five years or ten years that I might have had before.

English [00:24:42] I feel like that's true, especially with me as a parent. I think with a lot of young parents like you kind of have this realization that time moves too fast, and yet it's okay to just be in the moment a little bit more, linger a little bit longer, having more patience with the day to day. I like that. I like that a lot. One last thing before we go. Any final message or words of wisdom piece of advice that you want to leave our listeners?

Senan [00:25:12] Well, I know my headphones are covering it a little bit, but I am getting a couple grades, so I appreciate the wisdom of question now. I guess being a dad will will sort of, expedite that process. So I would say my my biggest picture, word of advice to all social entrepreneurs out there for profit nonprofit doesn't really matter what exactly you're doing, but to do it by listening first. And I was given that advice, actually, by Josh and Isaac, whom, you know, while at medic, and I consider them friends, mentors. And they told me, you know, when I was first setting up to do this, 5 or 6 years ago, I did I talk to them and they said, we did a six month listening tour. And I think in technology that you can often be a production pressure, like go build something, I build it and they will build it and break things and iterate quickly. Well, if you're truly trying to serve a community that you're not really part of, which is true for us as well. Like, like, yes, my my grandmother was displaced by the Syrian civil war, but very privileged. We don't live in a refugee camp. So how do we understand truly the health challenges? So we actually learning off of them? We also spent 3 to 6 months literally traveling around, listening, talking to doctors and their patients and, you know, allied health professionals, community health workers, operational folks that I think are true heroes that are often underappreciated in this work. How do we actually make a product that truly serves you? And I think that's why we got it right, is, you know, we were able to spend the time. We're grateful for that opportunity to visit on the ground and really learn from them there. And again, that's not something that always comes naturally. And technology certainly doesn't come naturally to me. As you can see on this podcast, I'm a big talker, but I'm grateful for the journey with my health, teaching me to listen, teaching me to empathize and understand deeply with the patient, the clinician, the operator, all the users of the technology we're creating. So I'm just hopeful that anyone else out there listening who's jumping in with both feet on creating something new and exciting that might impact the world, go for it and start by.

English [00:27:19] That's it for today's show. Please don't forget to subscribe to System Catalysts so you don't miss out on a new episode. Also, do us a huge favor by rating our podcast and leaving us a review. Thank you all so much for joining us, and we'll catch you all in the next episode. Before we go, we'd like to thank our producers at human Group media. We'd also like to thank our incredible network of partners who are supporting our mission, the Skull Foundation, the Aspen Institute, Echo and Green, DRK Foundation, Maverick Collective, Virgin unite. Charlize Theron Africa outreach project. Boldly go. Philanthropy. Scenarios for Global Nexus and new profit. If you are interested in becoming a system catalyst and would like to learn more about our partners, please visit System catalysts.com.