Hello Friends đ
This week we have the pleasure of introducing you to Dr. Karen Luyt. We, at The Incubator, are in awe of Karen's work and her dedication to improving outcomes for children. Karen embodies what we like to refer as consistent excellence demonstrated by the success of the large scale quality initiatives she has taken on over the course of her career. We hope you enjoy this episode. Have a good Sunday!
Do not forget to register for our upcoming conference March 27-29 at www.delphiconference.org. We are encouraging our listeners to register by offering a 30% discount by using the code INCUBATOR at checkout.
Bio: Karen Luyt read medicine in South Africa and specialised in Paediatrics (Neonatal Medicine) in the UK. She has a clinical academic post, based in Neonatal Intensive Care at St Michaelâs Hospital and the University of Bristol. She has worked in neonatal critical care for 25 years.
Karenâs laboratory-based research focuses on mechanisms of injury and protection and in the newborn brain. Her clinical research concerns neuroprotection and optimising health outcomes in newborn infants.
Karen was the chief investigator for the DRIFT10 study, a 10-year follow-up of the DRIFT (Drainage Irrigation and Fibrinolytic Therapy) randomised controlled trial for ventricular dilatation after severe intraventricular haemorrhage. She is the clinical lead for the National PReCePT (Prevention of Cerebral Palsy in Preterm Birth) QI Programme and Health Foundation funded PReCePT-Study, focused on optimising the uptake of Magnesium Sulphate for fetal brain protection, in every unit in England. She is strategic clinical lead for PERIPrem (Perinatal Excellence to Reduce Injury in Premature Birth), focused on reducing preterm brain injury. She leads the National Child Mortality Database (NCMD) programme in England. These roles have the aligned purpose to improve survival and reduce brain injury.
The transcript of today's episode can be found below đ
Ben 0:54
Welcome. Hello, everybody. Welcome back to another episode of the incubator podcast. It is Sunday, we have an interview for you today, Daphna. How are you welcome back?
Daphna 1:09
I'm doing well. I had so much fun in Scottsdale, I learned a lot I got to meet so many people that we've been talking to for the last, you know, two years. So that was a really, really,
Ben 1:23
it is weird to meet some of the people that we've been interacting with on the podcast in real life. You're like, do they? Do they know who I am? I can I go and just say hi, or do I need to like just like, do a FaceTime first so that they see me in the in the screen?
Speaker 3 1:38
That's exactly right. That's exactly. And he knows none of us look exactly like our pictures on things. So. But the it was such a cool experience. A great conference.
Ben 1:51
I mean, I got I got some FOMO I saw all this social media. And I was like, Man, I'm missing out. I was I was on service. I wish I could have I could have attended. But the feedback that we received, is that you you killed it. You did? You did phenomenal. Media incubator proud.
Unknown Speaker 2:09
Well, that's kind of you to say,
Ben 2:11
thank you to Paul, by the way, who's who, like took some pictures of you on and send them to us like, it looks so professional man.
Unknown Speaker 2:19
Yeah, he did a good job making me look perfect. Yeah, that's great.
Ben 2:24
Well, you know, it's exciting to interact with the community and, and we're looking forward to meeting all of you guys on our on our trail this year. And if you are planning on visiting Florida, then please join us at the Delphi conference this March 27 29. We have a great lineup. It's going to be an intimate conference. And there's going to be opportunities to connect and and, you know, share ideas. And so yeah, we look forward to seeing all of you here. In we should announce I mean, we haven't. Last year, I felt like every week we announced something new that we were working on and and so there's a cool word been we're working on. We're always working on something.
Unknown Speaker 3:14
It seems like it does.
Ben 3:16
The exciting thing we're working on these days is again, trying to expand the dissemination of evidence based practices around the world. And to that end, we are working with physicians in to female physician in Iran to try to have a podcast and Farsi so that so that we could serve the community in the Middle East, just as well as we are serving the rest of the world. So this is super exciting for us and we've been Maryam is a is a is a physician we've been working with and she's she's great. So we're very excited about that. We'll let you know when the the episodes are released. I just, I'm sure they're recorded. And it's going to be if you unless you speak Farsi it's going to be you're not going to have a hard time you're gonna have a hard time understanding but it's gonna be very, very cool.
Speaker 1 4:02
Yeah, the incubator family is growing, right? Yeah.
Ben 4:07
So today we have the pleasure of having on with us, Dr. Karen late. Karen studied medicine in South Africa and specialized in pediatrics and neonatal medicine in the UK. She has a clinical academic post based in the neonatal intensive care unit at St. Michael's Hospital, and the University of Bristol in the UK. She's worked in neonatal critical care for 25 years. Her laboratory based research focuses on mechanism of injury and protection in the newborn reign, her clinical research concerns neuroprotection and optimizing health outcomes in newborn infants. She has an impressive resume when it comes to her research work. She was the chief investigator for the drift 10 In that study a 10 year follow up of the drift randomized controlled trial for ventricular dilation after severe ivh. She is the clinical lead for the National precept, which is the prevention of cerebral palsy in preterm birth Qi program. And the Health Foundation funded precept study focused on optimizing the uptake of magnesium sulfate for fetal brain protection in every unit in England. She is the strategic clinical lead for Perry Prem, focused on reducing preterm brain injury, she leads the national child mortality database, which we will talk to her about in England. And these roles have pretty much all aligned purpose to improve survival and reduce brain injury in our population. She is active on Twitter at Karen late. We will link her Twitter profile in the Episode Notes for today. Please, without further ado, join us in welcoming to the show Dr. Karen late. Professor Karen Leigh, thank you so much for being on the podcast with us this morning.
Speaker 4 6:15
Lovely I look forward to the next 60 minutes or so.
Ben 6:20
So do we, you have a very interesting background. Obviously, your medical training and your medical career has taken you from South Africa to the UK. We always like to ask this question to our guests. What led you to pursue a career in neonatology?
Speaker 4 6:39
I think when I did medicine in South Africa, it was really clear to me what the contribution of newborn health is to the general health of the the bigger picture. And I could also see that you know, a lot could be done to to improve outcomes already at that stage. And the enormous contribution for instance, that inborn errors of metabolism congenital anomalies and prematurity have to the general health of children. So that's what what interested me.
Ben 7:15
And you went to medical school in South Africa. And now you work as a neonatologist in, in the parkour capital of the world, by the way, for the people who don't know, there's so many. If you're a fan of parkour, Bristol is the place what? How come you're, you're in Bristol, what what? Is there any factor that prompted you to remain in Bristol not to go back to South Africa, I'm just always interested in how life evolved from that standpoint.
Speaker 4 7:48
So when I did my house, my internship in South Africa doing pediatrics, I met a registrar who'd worked in Bristol and in the southwest of England. And that was the connection really. So when I finished house jobs in South Africa, you know, South Africa was at the point of going potentially into civil war. And my husband and I decided to travel to England, to travel the world really, but also to to further our studies. And so it was in the Southwest where I started in Bristol. And then working in Bristol, I realized that, you know, it's only when you're in a place that you realize what the contribution of Bristol is to to, you know, the larger sphere of neonatology. So there I met some important people. So Professor Mariana Torrance and Professor Andrew white law, we've been working on improving neurological outcomes in Europe protection and newborns. And, you know, that is where, you know, I realized that this was a place where I could make a big difference. If if I managed to pursue, you know, my studies there and if I managed to work with them, so I then decided to specialize in neonatal medicine. So I did general pediatrics, in my rotation in the southwest. I also worked in Great Ormond Street Hospital in London, doing critical care there. And then I went back to Bristol and did my PhD in in neuro protection in the newborn Euro protection in the MRC Centre for synaptic plasticity in Bristol. So Bristol was very much for me a place where, you know, where we were doing, you know, as a group, quite serious research on improving outcomes, particularly near neurological outcomes for newborn babies. And, you know, that's where I also met my mentor, Professor white light law. And so my career really took off from there.
Daphna 9:51
And I was gonna mention how I struck I'm always so interested when people tell us their stories and It really identifies how we just have to be open to opportunity, and you followed something that really interested you. And it turns out that it sets you up really for the rest of your career. So I love that about your story. So I'm hoping you can speak more to taking opportunities as they come. And in addition, what's interesting about your story, again, is that you have worked in so many healthcare systems, and something we like to do on the show is just address what we've learned and we take from one system, you know, to, to another to, to optimize our systems everywhere.
Speaker 4 10:44
I mean, I would agree with that. So, I think, you know, opportunities for me, my personality is one where I take opportunities, so you know, if doors are there, push against them. My whole, you know, my whole CV, if you're, if you read through it is about how opportunities have come up, and I've gone for them, I've also gone for lots of opportunities that didn't succeed. So I think the, you know, that the learning for younger faculty is that you have to remember that, you know, quite meant many things will fail. And it's not failure, you know, you're building yourself in the process. But the, it's only by taking opportunities that you you know, you're going to get anywhere. So, for instance, my PhD opportunity was, you know, one of the senior consultants in the unit said to me, there's a new clinical academic training scheme in Bristol, and did I consider going for it, you know, the closing date was one week from that day, I had the discussion. And I thought, this is an opportunity not to be missed, you know, three years full funding to do a PhD in Bristol, you know, in a world class sentence, so I just went for it. And, you know, spent every our next week preparing for it, and I managed to succeed, you know, equally, you know, there's a chance that I would not have succeeded. But that opened the first door for me. So I'd say to, to younger members of our faculty, our trainees, yeah, go for opportunities, I don't think you can sit here and look 20 years ahead and say and predict, that's where you're going to be that my career wasn't like that. I just took opportunities along the way. And I think take opportunities to work in different systems, if you can, you know, gives you different perspectives. I think just working in one center, without getting influenced from others is, is short sighted and and I think to be a well rounded clinician, but also a well rounded researcher, you do need to have influence from different systems. And certainly, I learned a lot working in pediatric intensive care as well, not just neonatal critical care, and also working in, you know, in different countries. I mean, the other thing I would say is opportunities, like going to conferences, you know, people think and nowadays, of course, it's it's less costly, but you know, by doing online conferences, and so on, but some of my biggest ideas in terms of research, and you know, sort of epiphanies for me actually came from going to the past conference in the States, or the the big European one, which would rotate around the big cities in Europe, listening to influential speakers, you know, about how they see they see a problem. And how they found solutions. To me, that is where you can literally absorb in one hour what some some brilliant person has learned in their whole lifetime. And if it's your you know, you know, obviously go to broader talks, but also go to this very specific talks. And I think this is where you get perspective. So take those opportunities, you know, I think it's money well spent going to international conferences.
Ben 14:05
That's what we're trying to do with the podcast, right? Definitely. I mean, they're trying to recreate a little bit some of the environment that we have at medical conferences where we can just share ideas and hear how people think and just just try to inspire others to pursue their passions. So that's, that's pretty cool. If it's okay with you definitely want to jump. Yeah.
Speaker 4 14:27
For instance, I mean, I can give you an example on the contribution of prematurity to child mortality, the I listened to a brilliant talk by Professor Joe alone, who does Global Health at the neonatal society annual conference. And you know, she presented what the, you know, the top cause of child mortality in the world globally was prematurity. And there's massive impact of prematurity globally. And I went back to my own You know, to the England where I'm living, living and working now and I tried to work out what was the contribution of prematurity to child mortality in England? And I couldn't find that data, you know, no way online? Could I find out what was this contribution, and I knew it was going to likely to be the same thing. And, you know, that's what inspired me to, to actually collect data. So so when the national child mortality database contract was advertised, I thought that my team should go for it. Because, you know, that was my vision and my mission to try and you know, sort of clarify that for for England, because you know, that data just did not exist.
Ben 15:41
So then, yeah, I could not agree with you more, we were talking off air about this. And the idea that if you want to find large epidemiologic data on the impact of, of broad issues, such as prematurity, congenital disease, it's very hard to find that data from an I'm going to say, from reliable sources, because you will find stuff, but the sources are questionable, and it's hard as for us as clinicians to to utilize this data reliably. So yeah. And, and it is very important. So I want to I want to go to the topic of the national child mortality database, because it's an amazing initiative. And for the people who are not familiar with what the NCM D, the National Child mortality database is, can you tell us a little bit as to what it is and what it is aiming to do?
Speaker 4 16:37
Okay, so in England, we have the Children Act, which is the legislation safeguarding children. And in there, there is a requirement for all children who died before the age of 18, to be notified to the national child mortality database. And then underpinning that there is a system of child death review, which means that every child who was born alive and then dies before the age of 18 has a systematic review of their life, their care, their social situation, and eventually the the reasons why they died. So it's an enormous data set on every child death, that is all collected into the national child mortality database. And so there are just over 50 child death overview panels in England that do the mortality reviews of every child death, and then they submit the data into the NC MD. And our remit is to produce reports, thematic reports, but also annual data. You know, we publish the annual data on epidemiological data on child mortality. And our thematic reports are very much about focusing on what we think are the big issues. So we've we've now produced three, three thematic reports, of which the perinatal report is one. But the and the beauty of this data is that the the seed ops this child has over your panels also look at modifiable factors. So every child death is reviewed through the lens of is there a factor in that contributed potentially contributed to the death of the child, which, if it was altered or transformed, might reduce the the death of future children, so it's completely focused on the future. And, you know, it's about it's about pulling together those modifiable factors that we will eventually make a difference to child mortality. And that's what these thematic reports do. And, you know, the first one we did was on the contribution of social deprivation to child mortality, which is something which was not really very visible in England, you know, in a country where we have universal health care, and universal social care, we showed in that report, that one out of five deaths could be prevented if we could eliminate social deprivation. So that that report was, you know, quite key in in focusing our minds on the impact of social deprivation on on child mortality.
Ben 19:13
Can you can you clarify for those of us who are not familiar with the term social deprivation, what does that entail, specifically like some examples of what that would look like?
Speaker 4 19:24
So in in England, we have the index of Multiple Deprivation, which is based on your postcode. So every postcode is is coded in using this index of Multiple Deprivation. And that has aspects such as income, the environment, the housing situation, violence, and in the read in that area, et cetera. So social deprivation is very much I mean, the primary thing is poverty. And you know, children living in poverty. This is what this report focuses on. And, you know, for instance, conditions like we know, prematurity, you know, two or three times more likely likely to happen in in mothers who are socially deprived. So who looked who live in the poorest areas in England, the same with sudden unexpected death. So caught death, trauma, all these things are socially patterned. And that report shows that very graphic limb.
Ben 20:30
And so then that's, that's, I guess, my next question, which is, you've mentioned trying to identify deaths that are caused by a modifiable factor. And and and obviously, a lot of these of these deaths can be attributed to things like you said, prematurity, social depravations, which are, which obviously, could technically be modifiable, but isn't that we've been trying for years and years and years to reduce the impact these have these factors have on healthcare. So technically? Is there is there other factors that have been identified that are more easily modifiable, that that that the NC MD has has identified?
Unknown Speaker 21:11
Yeah. So for instance, if you look at short
Unknown Speaker 21:14
term, easy modifiable is tough.
Ben 21:16
I know, right? I guess I guess something where Yeah.
Speaker 4 21:22
Nothing's easy, right. But it's, well, it's about looking at the bigger picture and looking at, you know, where, where is the? Where are you going to have the biggest impact, isn't it? So if you focus on prematurity, for instance, there are several evidence based interventions, that one can reduce prematurity from happening in the first place. So and secondly, improving the outcome from prematurity. So where preterm birth is inevitable, you can actually optimize the outcome for that premature baby. And there are evidence based interventions which we are not already using. So, you know, an example would be and this report the the contribution of newborn health to child mortality in England, actually has some suggestions in there. So there's some case studies about how you can do this. But I'll take one example, magnesium sulfate for neuroprotection, given to mothers and preterm labor, you know, and the impact on is protecting the fetal brain. This is an intervention that has high level evidence, which was already published in 2009. So the Cochrane meta analysis on this, and you know, it took years to bring in in England, we we brought in an equality Improvement Program to achieve this. So within two years, we achieved it in England. But if you look at for instance, now, international data like the Vermont Oxford networks, data on, you know, all sorts of morbidity and, and interventions, you can actually see that, for instance, in the United States, magnesium sulfate, neuro protection in it for preterm babies has really not taken off. So, you know, when we started in 2015, in England, the uptake was 20% for eligible women. And we've managed to push her to 85%, you know, and we've sustained that over the last two years. And the US sits at 65% and it hasn't changed. So in 2014, it was 65%. And then the last day to 2020 21, it was still 65%. So that gives you an e&m and I and you know, and that is a drug that for every 37 mothers, you treat you prevent one case of cerebral palsy. Cerebral palsy is a life limiting condition. And so children with severe cerebral palsy often die, you know, much younger than them than they would have. So that is just a prime example of an evidence based intervention. The other the other things are things that we already do like antenatal steroids, but we're not very good at giving a complete course within the seven days of birth, steroids, Hobbs, your risk of severe ivh. And we know that extreme preterm babies you know, about 30 to 50% have severe ivh and that's why they ultimately die. So bringing in you know, Doom doings, antenatal steroids and a really focused way, you can make a massive impact on a child's life, delayed cord clamping, you know, 30% reduction in mortality. I'd say to our, you know, listeners to the podcast, are you doing it? Are you actually doing it properly? And then, you know, other things like evidence based interventions in the new native, you know, I could go on probiotics, you know, 30% reduction in mortality, caffeine 42% reduction in cerebral palsy, you know, volume guided ventilation for every 11 Babies to ventilate without low, you can prevent one severe case of intraventricular hemorrhage. So these are evidence based interventions where we could make a massive difference. And I would challenge people listening to go look back at your data in your own units and see whether you are actually doing these things. And and in England, we're trying to, you know, to, to organize this in a in a in a structured way so that everybody is given the opportunity, every baby is given the opportunity of receiving all these evidence based interventions.
Ben 25:32
And I'm happy you mentioned these, these these modifiable risk factors, because it also underscores the thoroughness with which you review each case, right? Because at face value, it may appear that you're just looking at a death certificate that says a patient died of NEC of necrotizing, enterocolitis. And so Oh, that's the modified No, you're doing a thorough review of their whole hospital course, looking at interventions that potentially could have improved outcomes along the way from birth until unfortunately, death and seeing where this could be improved. I think that that helps us understand the depth with which the kind of work that's being done at the NCMC sorry, definitely, go ahead.
Daphna 26:10
No, I was gonna say it's, it's, it's multi fold the fact that you guys are doing this, right. So it's about like you said, with a, with an eye to the future, what, how can we improve it, so every baby has every opportunity, which is, which is so valuable, especially when I think about the numbers you shared, you know, Ben and I have worked at major centers. And so we're seeing these things as routine. But the truth is, even here in the United States, there are centers that are not doing some of these things. And the fact that it's layered, right, they're cumulative, it's not enough to just do one, but to really provide every standard of care all throughout the admission. And when I put on kind of my palliative care hat, I can imagine how important it is for the families in in your community, you know, in your country that feel like, you know, their baby was seen, you know, as an individual who had a medical record who had a history, and that somebody looked at it, I just, I can imagine it, it is a powerful thing, in bringing together the families of the neonatal community, even those who had babies who who died. So I, I that's probably not a major goal, but I think it's a potential side effect of of the work you're doing.
Speaker 4 27:38
Yes, I think that's right. And, you know, parts of the child death review, you know, our national guidance, is that families also have a voice. So every family has the opportunity to ask questions, which will be raised at the childbirth overview panel. And we will get back, you know, the clinicians that every every child has a name clinician, who will then bring back the information that was discussed and summarize it for that family. And, wow, yeah, so I mean, our reports, just, you know, just numbers, but actually, every every number in there is a child who, you know, who has a family and friends and, you know, was connected in some way. So, a very important part of what we're doing in the end CMD also is the engagement work or involvement work with charities who's who represent families, but also individual families. So every report we have written so far, has got stories of shared, shared by families, about their child, their child's life, and how it happened, that they died, and their perspective and and they've shared that with us with a hope that people will read this and, you know, understand what these modifiable factors are, and that it would motivate them to transform care. And so that is an incredibly important part of what we do. And I always say you know, if you look at projects and how you even if it's just in your own units, or if it's a national level or regional level, the you know, the first thing you need to do is to convince others to share your vision and join the journey. And for some people it's data so looking at a convincing data to to to click make that switch you know, that we need to change here there's that there's a need for change, but for some people is actually listening to a story of you know, some people are more inclined to to understand that and so I think it's very important when you when you're looking you know, when you're out writing report like this to have a balance of both both data but also also stories.
Daphna 30:00
Well in you, you must encounter so many stakeholders, right. And so the type of information you share probably affects people in different ways. So I think that's actually a really important piece when we're talking about getting people on board for our, you know, our projects is how we share the information or what is the need, that's very valuable.
Speaker 4 30:25
I think if you look at our database, you know, SMD N CMD dot info, there is also section on involvement. And we wrote a recent case study on meaningful engagement with, with families, which is very relevant to anyone doing research or you know, anyone doing national type of analysis or reports. And that is about you how you involve families meaningfully in what you do. So not just window dressing, you know, just actually giving them a voice.
Ben 30:55
This episode is proudly sponsored by racket meat Johnson. Recommend Johnson is dedicated to the research and development of nutrition products that help support baby development at every stage, including an extensive Enfamil portfolio for premature and low birth weight infants learn more at HCP dot meet johnson.com. Yeah, and I think this is something that's quite surprising when you go on the national child mortality database that you have so many. Initially, when we first got in touch with each other, and I and I looked up the database, I was expecting to find an Excel sheet, right? Or I'm kidding. But obviously, you're expecting to find a database, but it is so much more. And you have all these resources for providers, for families. For people who are not necessarily familiar with the traumatic event that is the loss of a child that you have. You have resources for general practitioners. And this is where I think you've taken it to the next step. Because I'm not sure I mean, I'm sure you are actually but it the work that you're doing in the UK specifically, is reminiscent of of work that we've mentioned on the podcast before, by George Neumann, who published in like the early 1900s, the book called infant mortality, a social problem. And this is sort of attributed to be one of the work that sparked attention for infants and mortality and really was was a linchpin in the evolution of neonatology and childcare. So I am interested to know exactly, when when you're looking at this database, how do you convince people that we need to have this broad spectrum of resources available to actually make a positive impact? Because it's a very foreign concept, and God knows how people react to concepts that are not very traditional?
Speaker 4 32:58
Yes, so I think the the success of this, you know, this database actually started when it was put into the legislation for safeguarding children. So that means it is something which, you know, the data collection has to happen by law, there is no opt out, it means that, you know, it does give it a sense of urgency. And so that means all clinicians are aware that they need to contribute data, and so on. And I think that's part of the success of events. So it means we have a complete data set. And also the way data is collected is standardized. So as you said, it's not just what's written on the certificate of cause of death, but much, much more in a much, much deeper. And also because in legislation, we there isn't, there's a requirement to notify each death within 48 hours of it occurring, it means that we can monitor mortality in real time. And of course, in the pandemic, that was incredibly important. So we could actually look at mortality week by week in the pandemic, and see, you know, if there were any trends, and actually, you know, act act promptly if we saw anything. So I think the if countries wanted to follow up our example, and of course, England has a, you know, a population of 60 million people 12 million children. So it's about a fifth of the size of the US. If you wanted to do this at national level, I think the first thing is to get it into legislation. And that, you know, then you can start you've got something that you can work with seriously. And, of course, you that you need the vision and you need buy in from people to do it properly. And it's by producing reports, like we're doing now that I think everyone the whole child death review community, as we, as we call our communities, motivated to actually collaborate and, and, you know, submit the best possible data they can do So it's that shared vision, you know, and getting, you know, a whole team of, you know, hundreds of people buying into buying into the idea because of course, it's work for everybody to do, you know, to review a child to child death in a in a in a thorough way.
Daphna 35:18
You've told us about some of the interventions, obviously, these these medical evidence based interventions, and I'm just thinking about, you know, Neonatologist at the at the bedside who say, Okay, well, I'll be sure to to ask the obese, they can get magnesium, they can get betamethasone, we can do caffeine. But as you mentioned, it's some of those, as we call them, really the social determinants of health, that are still a major disparity in in the babies who do well compared to the babies who have poor outcomes. And so that's still a place where, especially here in the States, I think we have a long way to go and providing equity to be these. And so I'm wondering what are some of the solutions that you guys have found to target some of those problems, which may be the neonatologist at the bedside feels, is out of their scope, but really, I think is not out of our scope. Because no matter what we do in the NICU babies still go home to like you said, their, their zip code where their resources may may be more limited. And so I guess my question is, how can we motivate people to be advocates not just in their hospital systems, but in their communities?
Speaker 4 36:40
Here, right, so I think that is, you know, the first one is public health. So looking at, so I think it's public health, but it's also how we work together as a team as a perinatal team. So, so much, you know, lots of what, you know, the die is cost already in pregnancy, and it's maternal health, you know, this is where it all starts going wrong in terms of prematurity in terms of ending up with premature babies. So I mean, the first thing is the the biggest modifiable factor in our database that we've come up with in our in our annual report is maternal smoking, and smoking in the home. So maternal smoking, if you can see if you can motivate a mother to stop smoking early in pregnancy, you know that the risk of prematurity is dramatically reduced, and also the risk of growth restriction. So in the UK, we now have an international program to to motivate moms to stop smoking during pregnancy. And that is likely to have a big impact on prematurity. And it's actually incentivized as a scheme. So there's a national guidance about this. And, and women are actually paid a fee to try and stop smoking during during pregnancy and it works. But so so deprivation report has an excellent case study in from Manchester and you know, how they've gone about caught in a good program called smoke free. And if your families are still smoking on the unit, you know, you're trying to tackle that. So even if they've smoked during pregnancy, when they go home, if you can motivate them to stop smoking, that's going to have an impact on that baby's health, you know, good impact on how they can stop smoking. So if we think of SIDS, you know, COPD death, the risk of if the parents are smoking of COPD, death is massively increased. And the risk of a premature baby, you know, dying of SIDS is much higher than a term baby. So it's that whole package of care around educating families about the risk of cot death, SIDS, and how they can reduce their risk to to it to a minimum level is really important to knickers. And I don't know if your units do this in the States, but we have, you know, there's a very good charity called the lullaby trust that has very specific guidance for families about how to limit the chances of cot death. And there's a specific guideline for premature babies. So it's slightly different for preterm babies compared to compared to turn babies and SIDS or cot death as is, you know, three, four times higher in socially deprived families. So if you start targeting that in your neonatal unit, you can have an impact. And you know, the rates of SIDS in the US is much higher than the UK so that is that is all about education and supporting families when they go home. So we have health visitors in the UK that can go into the home and look at the home environment and advise families about where the baby should sleep, the temperature in the room. Home Safety so things like you know when your bath the baby you have to supervise 100% You know, don't turn away look at your phone because the baby can drown. Thing is like dangling bits like blind calls your children get strangulated in that. So that these are the sorts of things where health visitors going into the home can make a big difference in educating families about the risk of the risk to their baby. And then the other thing is massively impacted. Sorry. You carry on?
Daphna 40:22
No, no, I want to hear I want to hear the rest. But I was I'm curious about this health visitor, I think that's what you call them? Is that for every family? How does that work?
Speaker 4 40:34
Yeah, so every general practitioner, so Primary Care Center has health visitors. And so there is a schedule of visits that how visitors do it, you know, for for families, and also, the midwives go into the home for the first 10 days after a baby's born, so that they're two to two influences there that you can help help set up families to, you know, to safeguard their children, and focus on breastfeeding, etc, as well. So that's the sort of thing you can do with universal health care. And it's something which we've we've we know, we obviously fight for, with all our minds in the UK to keep this and to keep the health visitors in place so that we can offer the service to all families.
Daphna 41:25
Yeah, it's a real I mean, it's a real commitment to that early newborn period into supporting families across the board.
Speaker 4 41:35
You know, the other thing I firmly believe in is that families, you know, pregnant women should be educated women should be educated even before they're pregnant, you know, BB prematurity, if you all the users have been involved in all my projects. So, you know, parent advisors who've had experience of preterm birth, told me they had no idea that had there was a risk of prematurity, they that it was something that just wasn't covered in pregnancy. And if you look at the, you know, optimization of the preterm baby all starts with place of birth, especially, you know, as below 28 weeks gestation, so the extreme preterm babies, if you born in a tertiary center, and there's enough time to optimize your baby, the likely outcome is going to be better. So you know, being born in a small hospital, where there isn't a team available to do all the, you know, the golden hour time stuff, sets that baby back, you know, in terms of brain injury and mortality. So there's something here about educating this to all women are in about the risk of prematurity and what to look out for. And also having preterm birth clinics in place so that our obstetric colleagues can, you know, focus on the women who are high risk, look at cervical length and all these predictors of prematurity and then actually making sure the baby starts off their life in the right place, receiving all the evidence based interventions that they're eligible for. And so, you know, I think that's where the energy should be put. So, educating families and women but also, you know, working together with our obstetric colleagues, the maternity team, because you know, it's the whole life. It's the whole perinatal care pathway that needs to be optimized. And it starts with maternal health during pregnancy. And it ends with us with a baby, you know, on a ventilator on on NICU. And it's that whole, that's what makes prematurity so challenging. It's this whole pathway that you need to influence. And it's not just doing one thing at the end on NICU, ie, you know, the way you ventilate the baby, that's going to make a difference. It's the you know, it's incremental gains.
Daphna 43:59
Yeah, I think also, sometimes our interactions with with families in our in our medical systems is a missed opportunity. You know, and in my experience, we we sometimes see the families for multiple pregnancies, right, some families will still continue to carry risk for prematurity. And so we may see them again. But had we taken the opportunity to talk about some of those risk factors or, for us in the States? I think if we had some of those social supports available, we could change an outcome. Maybe not for the first pregnancy, but certainly in a subsequent pregnancy. So, you know, I think what I'm taking from this is that we do have a role to say, Can we get moms can we get parents families to stop smoking during their NICU admission with us? Can we set them up for more reliable resources at discharge? You know, to while they're interfacing with our system, And so I really appreciate that. I want to ensure Ben doesn't have any more questions, but we have to get on to some of these. I think he wanted,
Ben 45:08
I wanted to say something because you're both are bringing an interesting point, which is that we tend to think for us as neonatologist as prematurity being the ultimate outcome, right. And so it's interesting for us to think, well, the baby's born premature now, I'm not going to harass this mother or this father, about XYZ, because I mean, what's done is done. But what I think the work you're doing with the national child mortality database is that it puts into perspective that the risks are long term. And when you look at some of the data that you've published, especially in your latest report about outcomes at year one, year two, then you start realizing that the story doesn't end with the NICU, as we often say, on the podcast and and us understanding that what we can still continue to modify during the NICU stake and potentially reduce mortality after the baby in the family goes home is hugely important. And and I think this is this is one of the big lessons that I'm taking from, from engaging with you and from and from perusing the website, that there is work to be done to reduce mortality, not just in the NICU, even though neonates in the first in the first year of life are quite a large proportion of the reported mortality. There's room there's room for improvement beyond that point.
Speaker 4 46:30
Yes, indeed, and that and I think probably the probably the big the probably the big things are, as I said, if you look at why premature babies or babies with brain injury, hypoxic ischemic encephalopathy, why they why they die in the first 10 years of life. The you know, in that report, we've got that spider plot showing showing the different causes of death. But the you know, some of them I've covered is caught death, so that, you know, that is highly modifiable, depending on you know, the home environment, and the other one is infections. So we look at the panda in the pandemic, children who died of COVID infection, you know, the Lord proportion had perinatal brain injury. So these were children with cerebral palsy. And I think the the general lesson there is all about, you know about vaccinations, so, you know, parents need to know what, how to recognize infection. Primary care needs to know how to recognize infections, because we know with infection deaths, they're highly modifiable. If if a recognized early, you know that this is severe sepsis, and we can get antibiotics in, you can make a big difference. So those are the so you can see there, the you know, the biggest contributions are infection, and then, you know, chronic conditions. So these are, you know, children with often chronic lung disease or cerebral palsy who eventually die in the first 10 years of life because of their underlying medical condition. So that's where we, you know, wanted to certainly infection, I think, is a big one. Carry on.
Ben 48:17
Yeah, for sure. I wanted to ask you one more question about the work you're doing with the mortality database, because I feel like as neonatologist, we often have this specialization where we get further and further into the hole of neonatology and engage less and less with the other specialties. I mean, in the context of the NICU? Sure, but but we don't really. Yeah, like I always say you rarely see the neonatologist at pediatric Morning Report. But the work you're doing with the child mortality database has, maybe maybe by default, pushed you into looking at some of mortality through the field of pediatrics for children all the way up to teenage years. And I am wondering, what was that experience like for you? Technically, we are all pediatricians, we've all gone through pediatrics training, but it is it is, in my opinion, at least for me, it would be a challenge to start delving into causes of mortality have older children in age 12 1317 What was that experience like for you? And was there any challenges in the beginning?
Speaker 4 49:27
Yes, you're right. So so I mean, firstly, as part of this role, I you know, when child deaths get notified to us every day, the there's an online system and and I actually still act as one of the clinical coders. And I think that's really important. So I'm the lead of this, this program, but every day I can see the data coming in, and I can see why children are dying. And you know, so that's that's about 10 children every day that die. And and that gives you a really, really clear perspective on what's happening. So it's not the same as looking at aggregate data actually reading the stories, you do get a really good vision about what's going on. The second thing is, of course, I tried is it trained as a general pediatrician as well, but it's about the team that surrounds you. So when when I built up that team, when we when we went for that bid, and then designed the mortality database, but also the project team, you know, I made sure that I selected people on that team that are not like me. I've got my strengths, that I've selected people who have different strengths from my own. And that goes, yes, some are, you know, intensivists, some are, and we've got a big professional advisory group that basically represent every single specialism in pediatrics, as well as public health, social care, etc. So you don't have to know it all basically, what you need to do is to has around you with a team that knows it all, so that you can tap into the right people. And you know, in that team, I've got brilliant people, you know, brilliant project managers, because that just frees me up to do you know, more of this sort of strategic thinking, you know, I've got communications officer, General, pediatricians, GPS, the whole lot. So so so basically health visitors on that project on that team. And of course, you know, representatives from parents and charities. So I think that's the first thing is yes, it was challenging, but I think when you when you when you do realize that you don't need to know it all. And you just have to have the right people that you can tap into it makes it actually work. I love that.
Ben 51:51
That's great. Okay, definitely you can you can move on.
Daphna 51:57
Well, I just wanted to make sure that we got to the work with Perry Prem, and I wanted to make sure I, I know the I want to tell people what Perry prime stands for. And I can't find it just now. But I'm open. I'm hoping you could tell us about your or your work with Perry brown.
Speaker 4 52:20
So Perry Prem is is a project about what we call perinatal excellence. And it is it's a care pathway of 10 intervention, evidence based interventions to reduce brain injury and mortality in preterm babies. And it was it also disrupt it's in that perinatal report of it on the child mortality database website, it's featured as a case study. Now, what we did in the southwest, so the southwest of England is 12, hospitals, population 5 million, so that's the size of New Zealand or, or Norway, we all work together, we realized that we actually have a higher than expected brain injury rate. So that severe intraventricular hemorrhage and white matter injury than then we should have from national data. And so we designed this this care pathway have evidence based interventions to try and address that. And it's something we kicked off with in the pandemics that we actually launched about a week after the first lockdown. So that was in 2020, April 2020. And it's a perinatal care pathway. So that means it's it's a project that's run by obstetricians, midwives, neonatologists and neonatal nurses, the whole perinatal team. And we worked with these hospitals and the perinatal teams from the ground up to bring all these interventions into place in their units to ensure that every baby has access equitable access to all of those interventions in the care bundle. And as part of that, we reduced we produced online materials because it was, you know, launched in the pandemic, we never actually, some people have never actually met face to face part. But you know, during this whole thing, it was all done virtually. And so it means that it's all free, free free access, if you want to go and download the materials, you can do it. So these are evidence packs, toolkits, posters, the whole lot, as well as the data collection, spreadsheets so that you can do run charts and so on. So the ambition with the peri Prem project is to the NHS has a long term plan to reduce neonatal brain injury and mortality by 50% by 2025. And that's what this, this this care pathway is about. It's designed to do that. And, you know, within the first year of implementation, we've got The data back, we improved. So we went from 3.3% of babies had the entire all the interventions that they were eligible for when we started. And at the end of implementation, it was 30%. And every month that's still going up. So that means getting every single, you know, so for instance, a 28 week gestation, baby or below needs all 11 interventions, because they they in the highest risk group. So the process has, you know, we've measured them that's recently been published in BMJ open quality, and then the patient outcomes. Interesting, we, you know, in the first in the implementation year, we can already see an effect. So, brain injury, so that severe intraventricular hemorrhage and cystic white matter injury, we reduced by 33%, compared to the baseline data of the previous five years, and mortality has been reduced by 22%. So it is a clear pathway, which should work because you know, these are all high level evidence based interventions. And it looks like by doing it in the southwest, we are achieving that. This is phenomenal.
Daphna 56:14
What I what I think is so impressive about the initiative is, especially when we talk about perinatal care, I mean, it is we've talked about this on the podcast, there's so many transitions of care. And you've included basically resources for everybody on the continuum. So that's the emergency department which frequently is involved in perinatal care, but gets left out left out of are these like educational packages, obstetrics, do you need technology, the pediatrician, lactation, it's all included. And I mean, this is this website is phenomenal for anybody who wanted to roll out, you know, a quality improvement project or program related to any one of these interventions or certainly the bundle. I mean, this would be a great place to start and at a at a minimum, just looking at the array of webinars, some of which you host talking about the these interventions individually, I think would be a good place to start and individual units
Speaker 4 57:19
that the biggest challenge and parry Prem I think the biggest challenge in neonatal, certainly improving outcomes for preterm babies, if you look at QI project, the you know, some of our most powerful interventions to improve the outcome given given by the obstetric team and the midwifery team. It's not under our control as neonatologist. And that's why if you if you're really serious about improving outcomes, it's all about collaboration. So if you work in a hospital where you're not talking to your obstetricians or your midwives, that's the first thing you need to change. You need to work as a perinatal team, where everybody has this vision to improve the outcome for the baby. And you know that our parents advisors feel very strongly about this. And if you look at most countries, we still talk about neonatal teams and maternity teams, maternity units and neonatal units. Very few countries talk about perinatal units, if you look at and that's why parry Prem is called Perry Prem, it's all about you know, perinatal excellence. If you look at, you know, I still think if you look at a country like Australia, I've never worked there. But I've, you know, a lot of colleagues that I collaborate with there, they have phenomenal outcomes for premature babies in Australia. Go and look at how they set up. They talk about perinatal units, perinatal research teams, is not separate in a separate silent siloed care. And I think that's, you know, that would be my strongest points I want to make really is that if we want to make a difference to outcome of children, it all starts with, you know, great perinatal care I love that.
Daphna 59:05
Yeah, I think that's most obvious by the the baby passport, where some of the interventions that would be checked off for that baby or happening, you know, before before before they even arrived, right and making sure that you know, to you're already starting to write the story for that for that baby. And then it's a it's a stark reminder when those things have been missed.
Speaker 4 59:32
Yeah, and I think the the baby passport has and is an interesting one, the, you know, on our steering group, we have a few parent parents with lived experience of preterm birth. That was their idea. So we had you know, the clinical passport, which the goes around with the mother and baby between units. But then the parents said, Well, how about we can have something similar for for the mother to hold for the mother and father to hold about their baby and All the interventions that their babies eligible for and what they've received, which we thought was a great idea, completely innovative. And you know, the feedback we've had from families who've used this passport is that it's, it's actually very empowering for them. Because having a preterm baby is extremely disempowering for for for a family. But this gives them back and an element of control. And also, it highlights that actually, it's not a disaster of your baby's born preterm. There's all sorts of things we can do to try and improve the outcome. So it puts a positive focus on it. And some of those things are in control of the mums. So you know, starting to express breast milk in the first six hours, et cetera. And yeah, I think the baby passport is, you know, that was an absolute amazing innovation from from our families.
Ben 1:00:56
That's, that's, I mean, you're you're saying so many things that we've we've been trying to bring up on the podcast and discontinuity between obstetrics and neonatology is so important. Obviously, we're running short on time. And I wanted to ask you, I guess, the typical question that we'd like to ask people like you who are achieving so many things, how do you manage to get all of these things done? And how do you manage to get all these things done so well, but also, I guess my second question would be, for people who are trying to do many things, do you think it's important that all these different things are somehow connected? Because I feel like there's so many connection points between the national child mortality database between the work done at Perry Prem, and your research interests? Do you think that's important for for you being successful in all these endeavors? Or maybe not necessarily, and it's just a matter of extreme organization?
Speaker 4 1:01:53
Yeah, I think to get lots done. I mean, the first thing I think, is you need a vision, right? You need to know why you're doing what you're doing. For me, that is really, really important. So my vision is to reduce mortality and brain injury. That's my you know, that's the mantra basically. And then everything I do, if I'm starting a new project, I think, is this going to get me there? Is this going to meet the goal that aren't, you know, that the the vision, the ultimate vision that I have, and if not, then maybe not invest time in that one, you know, and of course, you learn this, you learn this over time. The other thing I would say is to you Don't you do need thinking space, so to have your vision and to work towards it, you. I think we all as as as neonatologist need thinking space. That means, you know, working 100% Clinical is I think it's very difficult to do that. And I think the time has come that, you know, hospitals and health systems need to realize the neonatologist do need a bit of time to do research, and you know, quality improvement, research might not be your thing, but improving outcomes for your children in your own hospital Qi, you need time to do that. And, you know, I think that there needs to be investments in that I think everyone needs four hours or so a week to do Qi or research or thinking or thinking time. And the third thing I would say is to to have, you know, teamwork. So you know, no matter where you are, you know, if you're a leader of a program in a national programs like I am, I'm surrounded by a team of people that work really, we work really, really well together, we all share that vision. And that means, you know, we speak the same language, but we're a team of multiple talents. And I don't have all those talents. I've, I've I've got people on my team who have the talents that I need to get to get to reach my vision and my goal. And I think if you can organize yourself in that way, you know, that makes it a whole lot easier. And more likely that you that you achieve your vision and your goal.
Daphna 1:04:11
Yeah, my that was my last question. I just also wanted. And, again, your the array of work that you're doing is both clinical major database, but also basic science. And that was just the last piece of the puzzle I wanted to mention. I think so many trainees and learners are feeling like, well, I have to pick one or the other. I have to pick either the basic science or clinical or translational, I can't do both. And I mean, I can't do both. It's it's impossible, right? Or, you know, my mentor does this. So there's no way I could crossover into something else. And I think what you said is so important that like, if your goal is to reduce whatever it is or to improve whatever it is, then it makes sense to to have Yeah, to allow yourself the opportunity to participate in different different kinds of projects and that maybe it brings even more value to to your career. And I love that you highlight the fact that really to get work done, I mean, physicians and scientists just we need a little bit more, we need to advocate for a little bit of time, so that we can think about these big problems outside of the day to day work.
Speaker 4 1:05:29
Yeah, and I think trans, you know, translational research, you know, that's an interesting one, we tend to think of, you know, bench to bedside that part of trans translational research. But actually, if you look at the definition of translational researchers, it's the whole lot, including implementation science, which is the last bit you know, so we spend billions on basic research, researching molecules that say, you know, for near protection, millions on trials to test out these new drugs. And then we spend virtually nothing on getting those drugs, once you know, a trial shows or a meta analysis of trial shows something's works. We spend nothing, we expect it to get into clinical practice, just through diffusion, through people talking to each other. And, you know, I think that's a bit of translational research that we and clinicians, you know, even if you don't do research, that's the bit that we can all contribute to, to doing well. But I do think that national funding bodies should be focusing more on on because it's wasted money, you know, that first bit of translational research is completely wasted and irrelevant, unless you get it to the patient. reliably. I love it.
Ben 1:06:43
Yeah. I have no more question. This was phenomenal. Karen, thank you. Thank you so much for making time to be on the podcast, we will have on the episode page, all the resources, the links to the websites to both the national child mortality database, to the Perry Prem project to some of the BMJ publication that you've mentioned. So that people will be able to see the whole array of work that is being done. And hopefully this inspires people to support your your your work in the UK and maybe inspires others outside the UK to follow on a similar path. Thank you very much for making the time. Congratulations on all this work. It's, it's quite impressive.
Unknown Speaker 1:07:24
Thank you very much. I very much enjoyed talking with you.
Ben 1:07:28
Yes, this was fun. Thank you Daphna today. Thank you for listening to the incubator podcast. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcasts, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address NICU podcast@gmail.com. You can also message the show on Instagram or Twitter at Nikki podcast or through our website at WWW dot v dash incubator. That org This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns. Please see your primary care professional. Thank you
Transcribed by https://otter.ai
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