 So I have the pleasure of introducing our speaker and I'm getting there. I'm just pulling up her note here or my notes. Apologize Daniela just having just a little problem with my word one second. Okay. So Daniela Drantich is head of the reproductive rights program at Croatia's largest parents advocacy group, Rota Parents in Action, advocating for the right to evidence based dignified care and choice in medically assisted reproduction, pregnancy, birth and postpartum. She is a member of the mother friendly hospital initiative working group at the Croatian Ministry of Health and collaborates regularly with UNICEF Croatia. Daniela is also a board member at Human Rights and Childbirth. She holds an honors bachelor's of arts degree from the University of Toronto and is currently working on her master's in maternal and infant health at the University of Dundee. Daniela is author of a number of surveys and reports on maternal care in Croatia and has collaborated shadow reports to international agencies on maternal care. As you can see on the screen, the title of Daniela's presentation is more than surgeries and survival, how to use statistics to inform consumers and change policy. Daniela, I will now give you moderator privileges or presenter privileges so that you can advance your slides. Excellent. Thank you Diane for that wonderful introduction. I'm really happy to be with you today from Sunny Zagreb where it's about nine, sorry not nine o'clock, seven o'clock in the evening. Today I'd like to talk to you about going beyond surgeries and survival. What do we mean when we say going beyond surgeries and survival? Well, traditionally, the most important or at least the most basic statistics that we collect about maternity care across the world are the percentage of caesarean section rates and the mortality rates, be they perinatal mortality or maternal mortality. But more and more, it's becoming necessary to go beyond those numbers. And in some parts of the world, including some places that it's quite surprising, it's really hard to go beyond those numbers because it's a question about what numbers are we collecting? Are we collecting them? How are we collecting them? How can we get them? And what the heck can we do with them once we have them? So that's what I'd like to talk to you about today using our example of Iroda, which is an organization in Croatia. Just to give you an idea of what is Iroda parents in action, we are Croatia's largest parents advocacy group, and we're organized in a number of different program areas, one of which is the reproductive rights program. Iroda has about six employees currently working full time and about 200 members. This is a photograph from one of our actions a number of years ago where we had a large number of us in one picture so you can get an idea of what it looks like. If you look closely, there's one person wearing an orange shirt, and that's one of our dads. Our dads are very welcome and always present, but there's not a lot of them. It's mostly a woman run group. To give you an idea of what Croatia looks like, it's this boomerang shaped country that starts like this and then goes down like this with a very, very long coastline. Croatia has a 23% caesarean section rate, which seems like a lot and it is a lot, but in retrospect or not actually in retrospect but in comparison to the countries around us, we don't have that high caesarean section rate. Italy's rate is much higher. Austria's rate is much higher as is Hungary's. Serbia's rate, we're not really sure exactly what it is. Same with Montenegro and same with Bosnia and Herzegovina. The problem with these countries is that the statistics are not calculated or collected in a way that we can be sure of them and we're not sure of the national statistics, even though some of the local ones may be accurate, that doesn't mean that the national ones are. Croatia has a population of about 4 million and there are about 35,000 births per year. The birth rate has been falling considerably over the last 10 years and just as another note, one quarter of the population, not most, lives in the capital city, Zagreb. And Croatia has a very long coastline and lots of little islands where lots of children are born. Unfortunately, the islands don't have any maternity units or community midwifery, which means that women are transported to await birth on the mainland or in some unfortunate cases, which have happened and we had one recently. Unfortunately, women give birth in helicopters. Unfortunately, these are often times military helicopters and they do so with paramedics. It's not an ideal situation. Unfortunately, part of the problem is we don't know how many women are giving birth on islands. We don't know how many women are giving birth en route. We don't know how many island women are having their births induced or giving birth by caesarean section because they're sick of waiting for their birth to start on the mainland. So there were a number of different ways that we tried to go about getting maternity statistics in Croatia. And the first was the easy way. It was the way that was readily available and published on an annual basis. And that was through these statistics from the Croatian Institute for Public Health. They give an annual report that counts surgeries, that counts mortalities, and they give us kind of a basic idea of what's going on in maternity care. Unfortunately, there wasn't enough information in this report and the information was only national. There was no regional or hospital based data. Just as an aside, Croatia has about 30 maternity hospitals and 99% of the births take place in these hospitals. So it's not a huge number of hospitals and it's relatively simple to kind of keep track of what's going on in each hospital. Once we realized that we couldn't get the data from the Public Health report, we tried to find different ways of getting it. The next place that we kind of went was a place I like to call the Crafty Place. We went to the official journal of the Croatian Paryonatology Association, which is the association of doctors that work with women around before and after pregnancy, before and after their birth. The reason that I call this crafty is because these statistics, actually this journal is not available to people outside the profession. So you have to be a member of the profession in order to have access to the journal and the journal is only available in paper format. So basically what we had to do is we had to attend one of the Paryonatology conferences and actually get a physical copy of the journal in order to get the hospital data for different aspects of maternity care. In this case, we were able to get data on VBACs, on physiotomies, and on other little kind of segments of maternity care, but it wasn't enough. There were still pieces of the puzzle that were missing. So we decided to fill in the gaps of the missing data and we did that by sending an access to information request to the Public Health Institute, asking for the little pieces that were missing from the first two sources of information. And this was quite fruitful as we were able to fill in some of the gaps, but then there were still more gaps and we realized that there were no more official sources of information that we could get to. Just as one aside, we also tried to get the hospital level information from the hospitals themselves, but most of them were not very keen on providing that information. And if they were providing it, we weren't really sure that it was for all the hospitals that it was 100% true or they would skip some of the questions that we were especially interested in. So we decided to crowdfund, not crowdfund, but crowdsource the information and we asked women. We asked women what their experiences in maternity care were, what they felt in maternity care, how they felt their care was, how satisfied they were with it. And we had an amazing response. In 2016 when we presented our first survey to the public and asked women to complete it, in just over a week we had over 4,000 responses. That's about 10% of the women who gave birth in any given year, but given that the actual survey had almost 200 questions and it was an absolutely amazing response. Women are keen to share their experiences. You just have to ask them and you have to have access to them. One piece of information that we got that was missing from the official data was the percentage of crystalline maneuver. For those of you from North America, the North American name for the crystalline maneuver is fundal pressure. So this is when healthcare providers push on a woman's belly to expedite the birth towards the end. In Croatia for legal reasons, the crystalline maneuver is only very, very rarely, if ever, noted in the women's hospital notes. So there's no way of having an official source of information on the crystalline. But what we discovered from asking women was that of the women who had given birth in the two years previous to our survey, 54% of the women who gave birth vaginally experienced some form of the crystalline. And here you can see on my slide the different forms that were used. The one thing that we found most surprising was the fact that 20% had the crystalline with two providers using their full force on her belly. That type of violence and that type of harm in maternity care is something that we had received sporadic reports on. But for the first time, we actually had a piece of statistical information showing us that this was in fact a very widespread problem. So now that we had all this data, it was a question on what to do with it. There are many lots of many different options, but we decided to use a strategy of two different methods. On the one side, we wanted to educate the public and stakeholders in maternity care on what was going on. And on the other hand, we wanted to use the data for advocacy. We were ashamed to have all this data in one place and available for the first time in kind of one area and not to have it available to researchers, to healthcare providers, to policymakers, and to women who at the end of the day are choosing which maternity unit they're going to have their child in. So if we look on the education side, we managed to secure a grant to make a website that's called erodilishta.eroda.hr, which basically translates to maternityunit.eroda.hr. And thanks to excellent inspiration from colleagues from Poland, we collated the data for every hospital and made it into a user-friendly website where women can come and click on their hospital of choice and find out some of the data for that hospital. It was necessary to take the huge mass of data and kind of identify what women would be most interested in and what would be most helpful for them when they were choosing a maternity hospital. Thanks to our very adept and creative IT people, we also managed to add a few little kind of fun features. So this is in Croatian, but I can point it out to you. So here we have general information about the hospital. There's some information about antenatal courses, what the woman has to take in the hospital for herself, so what she has to pack, what she has to pack for the baby, how long a typical hospital stay after a vaginal birth is, how long it is after a caesarean birth, when visiting hours are. So these are, you know, information that the public needs and the public wants to know. After all this kind of information, we have statistics for every hospital. So it's the number of births, the V-back rate, the caesarean section rate, the vacuum rate, and other kind of information. Now where the clever part comes in is we have a feature where women can send us their birth stories and when you click on a chosen hospital, the very smart background takes out the stories from that particular hospital. So that a woman who's browsing or maybe considering a certain hospital can also read stories, birth stories from that hospital. The birth stories also have these little tags that kind of tell us, you know, was it water birth, was it V-back, was it a caesarean birth, so that the woman can further kind of find something that she's interested in. We also provide kind of like specific information for the hospital, like, you know, a little map, maybe a phone number, and general information that women are interested in. This may seem a little bit silly to some of you who are, you know, coming from very high resource countries. Croatia is a relatively high resource country, but we don't have this kind of information available on hospital websites, at least not for all hospitals, not always in a user-friendly way. So this was a great way to put all the information in one place for our maternity care users. There also had to be a way to kind of take that massive information and communicate it to the interested public, or just, you know, the public in general, and to raise awareness about what was going on in maternity care. For the average Croatian person, if you're coming out of the hospital alive and you have a baby that's healthy and alive, that's kind of the end of maternity care and what we expect of it. Our expectations are very low. So what we wanted to do was we wanted to present the fact that different hospitals had very different procedures and had very different statistics. This is a stark example from the very far east of Croatia from Vukovar General Hospital. We prepared a kind of pictograph meme using a free online tool where we showed what happens to the women who go into that hospital. As you can see, 16% of the women here in grey have a caesarean section, 61% have a vaginal birth with an episiotomy, and 23% leave the hospital without being cut above or below. So they don't have a caesarean section and they don't have an episiotomy. This hospital has an extremely high episiotomy rate. And if we take a look at the episiotomy rate just for vaginal births, it's about 75%. So it's a huge number and we wanted to compare that to other hospitals that are relatively close to this one geographically but vastly different in their routines. And we also wanted to show that some of the differences in the hospitals have much more to do with the culture of the hospital and the practices in that particular hospital than on good practices. We really wanted to show that not all the practices were evidence based. And just because, sorry, let me just go back one sentence, we really wanted to show that women were exiting the hospitals with healthy babies in a similar fashion among all the hospitals but the actual routines and the practices in the hospitals varied widely. So we wanted the public to see, yes, everybody's basic goal is for the woman and the baby to be healthy and alive, but there's different ways to get to that goal and those ways are not necessarily violent. The other way that we used the data was for advocacy. So we collated all the information that we received into a survey on maternity practices, which was a tool that we later used in different forms of advocacy nationally and internationally. For example, we worked with the Center for Reproductive Rights in Geneva and another Croatian civil society organization to prepare a shadow report for the periodic review of Croatia before the committee on the elimination of discrimination against women, which is also called CDAW. This is an excellent tool that every country can use because every country has a periodic review every four to five years and it's an opportunity for advocates in that country to kind of give the members of the committee background on what's actually going on in the country. The state is going to give a very pink and rosy picture of what's going on, but it's up to us who are on the ground to provide a little bit of an alternative to that. This was extremely successful and in their concluding remarks the committee reprimanded the Republic of Croatia for not providing home birth, for not providing maternity care to women on islands, for not doing anything to combat harmful practices in maternity care and other different kind of aspects of reproductive health care. We were really happy about that because with this we were raising the awareness of the committee and of other international organizations about the problems that are happening to women in maternity care. We built on some of the momentum built by colleagues in other countries and I really do encourage you to seek out organizations that deal with human rights in your countries and give them a heads up on what's going on in maternity care because maternity care really is more than just women leaving the hospital or surviving the end of pregnancy. We used the same report when we had a visit by the special rapporteur on the right to the enjoyment of the highest attainable standard of physical and mental health. This was a visit by this UN special rapporteur who visited Croatia at the end of 2016 and we used the same data and presented it to him and he also included that in his final report. So, you know, the state is getting now had kind of a second voice from an international organization telling them that they had to improve things in maternity care. With these, we're always kind of building a little bit of momentum. And it continued where the High Commissioner for Human Rights at the Council of Europe, which is kind of an organization that's that includes countries that are in the EU, but a little bit outside of that scope as well. And he basically told countries in the Council of Europe that they really had to start dealing with access to respectful maternity care and access to out of hospital birth. And he quoted some of our activities and some of our reports in addition to reports from countries like Slovakia and Greece. In addition, you know, at some time you have to find out, you have to seek out some of those unusual suspects that can also be allies and collaborators. And in this case, we worked with the coordination of associations for children, which it all is a member of because we're parents and we also deal with issues that have to do with children. This year we helped prepare a list of issues, which is essentially a shadow report using some new terminology that they have at the committee for the convention on the rights of the child. And basically what we did was in addition to issues facing children in Croatia, we also took the issues in reproductive health care and maternity care and framed them within a framework of the rights of the child. And we presented that as part of this report, which will be presented in Geneva over the next few weeks and months. Our Croatian periodic review before the Council on the Convention of the Rights of the Child is in 2019, so this is kind of us getting ready for that report. All this advocacy nationally because we have to work with national organizations and internationally has lifted the public's awareness about issues in maternity care. So that our Human Rights Report for 2017, which came out just a few weeks ago, also features maternity care. So basically we're taking these issues using the data that we collected and we're putting them on the agenda. What we've done is we've worked with usual and unusual suspects. We've catalyzed midwives health and other health care providers and women and together we're coming together like wonder women to affect lasting change. Together we can be wonder women. We just have to collaborate. And this is one of my favorite quotes that I like to end my presentations with saying that, you know, in order for women to be successful, we have to hold each other up. And in order to hold each other up, we really have to concentrate on what our end goal is, leave our egos aside and work together to lift everybody up to put our issues on the agenda. And to make maternity care an issue that's important for everyone. And that's all I have to say for you today. I'd love to hear any questions that you may have. So thank you, Daniela. Excellent presentation. So it's really exciting to hear about how you utilize statistics, which is oftentimes a word that many of us shy away from. And the process that you went through in obtaining the information that you needed to undergo such and highlight such an important topic. So I will open up to the audience for any questions that they may have. We've had some discussion in the chat, Daniela, about fundamental pressure that's been an ongoing discussion here. And let's see. Fundal pressure is common. It's quite common in Central and Eastern Europe, and it's quite common in Southern Europe. So it's something that you see all around the Mediterranean basin. And it's something that you see a lot of in countries that were a formerly communist. And Cecilia is definitely amazed at how you've done such wonderful work in a region without organized data. And I'm also amazed that you had such limited data to begin with and how information is not shared with online or the use of technology when you talked about the journals. Only available in paper format. Well, I mean, I think that is kind of a planned strategy on the part of certain health care providers. They don't want the data stratified from hospital to hospital to be available. Because then they have to confront the fact that one hospital has a 75% of PCotomy rate and the hospital just 50 kilometers away has a 20% of PCotomy rate. Right. And Linda has something in the chat. She says that she thinks the US is getting such bad press about the higher mortality rates because they produce statistics. Other countries do not keep or publish such data and thus keep that under the radar. Absolutely. And some of the things coming out of the United States over the past few months have shown this. But there is a problem at the state level and throughout the United States. And I'm sure you know more about this Diane than I do, but you know, the statistics are not the same from state to state, much as they're not among European countries. And the problem is that you can't count all the maternal deaths necessarily. And you essentially have to crowdsource the information, which is what ProPublica did in their maternal health series in the United States recently. One of the problems that I think a lot of European countries are starting to see more and more of is the fact that we're not all counting maternal deaths for the same period of time. In Croatia, for example, maternal deaths are only counted up to six weeks postpartum. So if a woman dies, you know, two months later, it's not counted as a maternal death. Okay. Interesting. And Donna has a comment here. She says she's really surprised that the PCotomy rate. She's saying surely it isn't necessarily that high. Yeah. Now there's there's a huge difference in the PCotomy rates throughout Europe. We can look at a country like Denmark where the percentage has been, you know, between four and 6% over the past 10 years. And then we look at countries in Central and Eastern Europe where the percentage is huge. I was also very surprised to hear the PCotomy rates in France and Belgium. There's also been a lot of media coverage about those recently and they're approaching 70% in some regions, which is astoundingly high. Wow. And Linda's confirming what you just said. She says in many countries they have much higher rates of a PCotomy. Right. Yeah. Cecilia has a comment here and I think this goes back to how you know things are measured like maternal death and so on. And she's saying that's correct that not all U.S. states use the uniform birth certificate. I think that's what she's referring to. Is it Cecilia for reporting data? Yeah, I think so too. Yeah. And the problem is also the death certificate as well. So if a woman, if a woman of childbearing age dies, you know, do we collect the data on whether or not she was pregnant in the year previous to her death? And is it investigated like it is in the UK to see whether or not her death was related to pregnancy or something related to pregnancy? Right. And I think this is what Cecilia is speaking to about the lack of uniformity in reporting. She's saying this highlights the need for a minimum data set across countries and regions so that we can compare, learn and determine appropriate responses. Absolutely. Yeah. And Linda said that in Iran, for example, if you don't have a Cecilian scar, you will have an amnesia out of me. Yeah. That's the cut above or the cut below. I mean, I've even heard stories from Hungary where a woman who had a C-section was also given an amnesia out of me because the resident who was doing, who was in charge of her birth at the hospital was afraid of what his or her boss was going to say if they saw the death certificate. You know, the women didn't have an amnesia out of me. So I mean, that's totally ludicrous if she's already had a C-section, learn earth to she needed amnesia out of me. But it's just kind of, you know, the mindset and that really strong hierarchy where everybody's afraid of the person above them and the person above them basically, you know, sets the tone for the hospital and that can be good or it can be bad. Wow. And Cecilia has another comment here in relation to the lack of use of a current birth certificate. She says, yes, there is one birth certificate that I think only about 30 states use the latest version. So it sounds like they're not using the updated information to report the required information. Yeah. Yeah. Yeah. And Linda said, go ahead, Daniela. No, no, that's okay. Go ahead. I'm just make. So just a comment from Linda that not all governments will give you the data, those data. And she said, and shall we mention informed consent? Well, yeah, that's a whole week. So just to address the first part of the comment. So yes, not all the governments will give you the data and that's the issue that we faced. We have the kind of benefit that Croatia is not a large country and most of the institutions are centralized. So we didn't have to go from hospital to hospital begging for data. We just kind of went to a central location. I have colleagues in Poland where they have over 400 maternity units who who were kind of listening to me go on and on and complain about the problems that we were having collecting data. And they said to me, you know, at one point we were in court with 40 hospitals about access to information because they did not want to give out their statistics. They won every single case, but that's just, you know, in some countries it's really, really hard. And what I decided after hearing that story is okay, I'm not going to court with anybody because I don't have the resources for it. But I can perhaps, you know, try and figure out a way around it. And that's basically what we did with regard to informed consent. We did ask about that in our survey, but the problem is the women's understanding of what informed consent is and the healthcare provider's understanding of what informed consent is. So many of them thought, you know, just signing a blanket consent form on admission was enough to handle all the consent and all the issues dealing with consent. When in reality you have to ask the woman every time before you do anything to hurt or her body. So that's kind of an issue that we're still working on educating the public on. Wow, quite interesting. So Cecilia has a comment in the chat. She says, she has a comment and a question. She says there was a movement in the U.S. five to 10 years ago to promote apesiatomy to preserve vaginal strength and tone. Data was presented to support that as well as data to refute it. She thinks physicians have moved backwards away a bit. And she was asking, you know, what do you think and also reaching out to Catherine for a response. Yeah, perhaps Catherine can type a response in the chat box. I mean, that's a myth that is quite pervasive in this part of the world that apesiatomy is going to save women from something. But when we look at hospitals who have lower apesiatomy rates, we don't see that there are. I'm looking for the English word right now, but like for three third and fourth degree tears, we don't see a huge increase in them. And it seems that, you know, whatever the hospital practice, the hospital's practices have more to do with the third and fourth degree tears. And especially when doing funnel pressure or the crystal are then, you know, lack of apesiatomy. Wonderful. So is there any other discussion or questions for Daniela? So let's see. Catherine is saying that she recalls an consensus conference that presented data on vaginal integrity. So is there a necessary and on demand? Yeah. Is that a question for me about the Syrian on demand in Croatia? I can pretend like it is. It doesn't answer. So that's a very interesting question that I think I really want to do some more research on. We do have one maternity hospital that's private. All the other hospitals are within the state healthcare system. The one private hospital has accounts for less than 5% births a year and it has a 75% caesarean section rate. Yeah. The conference was on the conference was on maternal requests for. Yeah. I'll just I'll just finish since I started this topic. There is in this part of the world quite a lot of cash payments going on under the table in order for women to access Syrian on demand. We don't have a number on that. And in fact, many women pay under the table in cash to get better treatment during pregnancy and birth. But we don't have any information on what that number of women is. But that's another issue for something that that we're going to have to crowdsource the data on or do the survey ourselves because there's never going to be any official. And do you see Linda's comment in the chat? Of course that is the problem in countries like Iran where the women want to see section because it keeps them good for their husbands. Yeah. That's also a myth that, you know, we have to teach women about. And Catherine Prostance was preserved vaginal tone. Okay. Alrighty. So that's interesting. Okay. It is. I mean, as much as we may think that a Pseudomy is is Preval is high. The Pseudomy rates are high in only certain parts of the world. When you kind of deconstruct it and start looking closely at different countries, you get very surprising rates in places where you would not expect it. Wonderful. Anyone else? So Daniela, any final words, final summary? As for final summary, I really think that we can build on each other's momentum and learn from each other and see, you know, positive examples of what's going on in other countries. I've been inspired from the listening to mothers survey going on in the United States and similar movements in the UK and in other countries. And by, you know, taking best practices and see what you can use in your own region and then using the reporting mechanisms, especially these international ones, we raise the profile of the importance of maternity care. It's not just about avoiding surgery and coming out of pregnancy and childbirth alive. There are so many other issues that have to be taken into account. Maternity care is such a complex puzzle and it's not fair to say just, you know, leaving it alive and healthy is the only goal. There's so much more that we need to do to empower mothers and to empower families. And I think that if we build each other up and build on each other's momentum, we're going to continue to raise the profile of the importance of maternity care. Thank you, Danielle, for such a very stimulating and informative presentation. And I can see according to some of the final comments here that the attendings are echoing that with very interesting presentation and discussion and encouragement to keep up the good work. Thank you.