Computer generated transcript

Warning!
The following transcript was generated automatically from the content and has not been checked or corrected manually.

So we now move onto the next session, which is presentations and a panel discussion. We're moving into preventing unnecessary cesarean section birds and improving safety from the public and the patient involvement area on from the funders perspective. So we have in right now by my Mohs and monsieur Mean big. Um, we're going to give us a presentation on patient and public involvement. Um, Andi. This mosque is a patient and public involvement representative. She shares the National maternity and very little. Or the Clinical Reference Group has worked on multiple city studies of the Box Research Center for Women's Health, developing and advising on patient and public involvement. And she assesses the bag for funding applications and reviews content for health education. England on. She was previously an involved advisory group member. Onda Yes, Maine is a PPI representative member off the HR Academy. She facilitates online workshops or medical research. She has extensive interest in research in pregnancy and gynecology. She's a public contributor. An expert with lived experience is that she likes to share on helps strategic development of services, techniques, medications and digital tools. I think she also now our company's women during their birthing experience on DA. She has started her educational keep a career after having her family is so That's a plus point. So welcome. Both off you to take us through, uh, this session and then we'll come on toe. Charlotte. Welcome. Okay. Hi. Thank you, everyone for coming. Yes, I would just introduce ourselves a little bit and then tell you a little bit about some of the work that we've done in promoting and advocacy for women's health. Eso next. Yeah, that's us. Oh, so, yes, I'm now, why on this is yes, Maine. And and So, um, has you mentioned on a PPI? Remember, at the NIH or academy, which I got into with, ah, lot of struggle on a lot of thumb hard work. After failing many interviews that I finally got in, Um, so, uh, I'm a qualified organizer community organizer, and my background is more about helping members of the community. I do a lot of work on a voluntary basis to empower housewives and kind of men told them to become more independent on, but I teach the me sole, and I do all sorts just to get them going on, especially women who do not speak English and speak Bengali or does the first language? Um, I've yet So I've I've started but not started. I have bean helping, um, assisting deliveries for women who do not speak English. So I I actually, when they find out they're pregnant on day, uh, I usually do this through recommendation. I started with families who needed help throughout pregnancy, and they're on birth on then because they liked how I helped them are. They recommended me. And that's how I started helping other women in the communities. And so far I've assisted in delivering 10 babies, so I've kind of been there. Think it'll on Also, I have five Children of my own, so I actually have no only see me, and I've actually been there, done it all. I had the forceps on twos, you name it. I've been there, except except except the C section, which I'm very fortunate. I feel very fortunate that I didn't go through that this close to it until my baby was actually born sir. Um and actually, this is how my journey started. After having my first born in 1998 my labor was extremely traumatizing on. Actually, that's when everything was tested on me. I felt like a guinea pig. Onda it was I was very young. I was only 19 on. I just had the most traumatic experience from the get go on the hospital. I was at the Royal London on, but I think that the care that I needed and afterwards I was just so traumatized. I think I must be the only mother that actually didn't want to see their baby after the baby was born because I was so so I just I wasn't with a tool. So when the bait, when the doctor came and they they said that well, the mid by she said, This is your baby I said, I don't want to see. I don't want to see after everything that being through, I don't want to see the baby on. I couldn't actually, because he was rushed off to the NATO. Um, but that's when I realized if I can speak English and still go through all that the racial discrimination in everything that I suffered at the hospital, well, all those go women going to do You cannot speak the language on that inspired me to get into research on day to not get into research, actually, but to start helping other women in the community to to empower thumb on it, to help them becoming dependent and make choices on their own. So that's not on their own, but learn to make choices. But that was impossible if they couldn't speak English or understand it. Um, so that's my story, and I'm going to pause it over to know, you know, thank you. Yes, men. Yes, my name's not always, I said, and I was one of the founding members for early charity, which is helping to sponsor today on ditz around. Protecting on promoting women's health internationally were only very small, but we have been ambitions, So I also I'll tell you a bit about my story in a minute. But I'm a non oral. Remember a Q A M U l for the work that I've done for patient public involvement in research, and I'm also on the voting panel for the UK National Institute of Health Research, which has been amazing and for me is I've learned so much. I mean, when I think about it, I started probably about four years ago. I don't know how again, like, yes, when I go interviewed, I don't know how how I go in, but, uh, very honored that I did. And when I reflect back now, I probably assessed about 100 million lbs worth of funding applications. So in that process, I feel like I've learned so much not just about women's health, but about research in general, in different fields. I also have two lovely Children on, I think, like, yes, man. I also had quite traumatic experiences on that really pushes you to want to make things better generally. And I think for us, research is kind of like a tall for that. Really? Um, so this is me when I was pregnant, So I started my journey on patient public involvement as a participant in a research study, Eh? So I you know, I worked in shipping nothing to do with that women's health at all. But eso the research study of us on was for a long period of the whole nine months. Um, and then after that, um, once I finish, they asked me to do some combs, and then they invited me onto um, the yeah onto the steering committee. And so we've come a long way. Really? Yeah. That's how we met. Really? So through Katie's team. So this is a patient public involvement group. Um, Andi, we're really We were set up in 2015. Um, and I so lovely to see some of the people here that helped to set it up so shaky low was one of them. Jones over there, I think. Way we really It was amazing on we really a mix of people, so yeah. Yes. So when when I joined the Katie, Katie seemed obviously Now, now I was already there on go when we discussed some of the topics. So organizations would come to us for advice from a public perspective and patient perspective. Um, that's when the sea safe. It was a, uh, discussed with us on. I brought in perspective from my home country, which is Bangladesh on the pregnancy. Culture in Bangladesh on South Asia is slightly are very different from the culture in this country. So when they're pregnant, when a woman in Bangladesh is pregnant, her decisions and everything the pregnancy, all all that is usually made by the in laws or the mother in law or the sister in law. So the antenatal appointments the mother in law would attend with the daughter in law or the sister in law on the father will be nowhere to be seen. Maybe things have changed now, and I hope they have, um, but the father is really You'll see him right at the end. When the baby's all delivered the month Mother Mother's gone through everything and the child would be lift. The baby would be lifted and given to the, um, father's arms. So that's the kind of culture that we had. But I know how, um, hoping that things have changed. I haven't seen in that sort of. It's a sector invalidation, so I don't really know. But I've seen it through families. On Dember is where the mother of the pregnant woman is just pregnant is a woman pregnant on everybody else is making their decisions, and for them and and things like that, which is really sad on. That's where I feel that it's important to educate women and no only women educate the mother in law's sister in law and the father to be about their roles, and what happens is throughout the pregnancy. All the decisions are made by the inlaws on towards the end, two weeks before the delivery. I don't actually a doctor on E nodding her head. So two weeks before the delivery, they're pregnant. Woman would go to her father's house where the delivery will be, or whether it's in the house or in the hospital. So the parents cough up the price of the costs. Basically, after the baby is born, the father comes Curries the baby, and they all work home to her in law's house after the parents with a bright Um, sorry. Their mother's parents pay for everything. And if it's a C section, they're gone. Basically, it's extremely expensive in Bangladesh and South Asia, I think in in in any other country, river privilege to have the any chest. Um, I'm very fortunate that I'm in this country because it's very sad to see some of these conditions that people have their babies in, you know, deprived countries on. So I kind of bought in that perspective to the sea safe idea that was discussed in Katie's team. Thanks, Yes. So, as I said, we're really like a mix of people. So we all have different experiences, both here we have a lot of family that live outside of the UK on day. So I think we get a range of voices within our the research work that we advise on and that we help develop. I think the other thing we're talking about advocacy and sustainability. So for us, here we have it's not just a mix in the group, but we have different interests in the group. So, you know, some of us really interested in disabilities. So we have various members who have disabilities in the group. Some of them are really big champions and advocates we've got, yes, mean does work with debt and people that are in debt. I'm really interested in women with that. Let's see on Gimignano to a more long term health conditions because with epilepsy, lots of women have another especially mental health illnesses. Well, so we really abroad mix of people within the group. Oh, yeah, it's a picture of consume. So in the time that we've been found there just to give you a bit of context about where we've come, you know, this for us is a long term thing that we've been doing. We've advised on put 45 research studies, but in reality they didn't get funded way. We're probably everything from PST people coming to speak to us about their ideas or to help develop, you know, questions that matter to people in the group with different experiences through to, you know, funding applications, troubleshooting, dissemination so that all the way through the research cycle, I think the other thing that's interesting in this coming to the sustainability is up for us. This is not a job here. This is our lives. So when it comes to advocacy, it's not just, you know, research for us is a tall really to improve women's care. But when it comes to advocacy, if I think about some of the really important groups in the UK that pushed through is not just about the health, you know the politicians, the people setting policy because it's a job, they move on it some point. But for us, we will be fighting for our care on our Children's care longer term. So I think that's why within research is really important to engage women and families within that because we were living it within that kind of if you want to say it, so I don't know how, but I've actually become, um, steer steering group, a member panel member, champion, ambassador or various organizations. And I don't even know how I even got to this stage because all I was doing was just fulfilling my passion to help the community. My background is actually in community artwork and community organizing on welfare advising. So when I see when I when I had clients come in with red eyes on, you could see that their lips were very dry, so you hadn't eaten on drinks like that. I knew that that it's a holistic thing. You can't just address that, you know, big, coming with all sorts of, say, mentoring areas and things like that. But it's not just the Renteria. There's mentally health issues that need to be addressed. There's physical issues that need to be addressed, this housing issues that need to be addressed. There's so many things, And when I saw those clients, I said, I can't just advice the one they're finance. I can't do that. I need to go beyond and help them more. So I helped so many of my clients do rehouse them to get them back on their feet and not do like six different jobs just to pay their rent on because it affect every aspect off their life. And more than anything, they give too much just to breathe on, just to sleep. Just you have a bed to sleep in at night. And so when I saw all that, that's how I got into research, I said, I need to all this hard work and all this suffering. It just can't go to raced. We need to do something about you and that's why I go into the unfair that campaign we started this campaign on. Through that I've met many MPs at the house is a parliament and I've attended many meetings in the houses of Parliament with various MPs on. I've also being privileged to interview a Russian are really which is our She's our local MP. The reason I interviewed her Waas to see her story to understand because she's a Bangladeshi, she's a Muslim on she's a woman on These are the things that I feel very passionate about empowering women on. That's why I invited Russian our alley to be interviewed on her story, said On, taught me so much and gave me so much encouragement and said on that just said to me I could do this. I could help women whether it be medical, whether it be physical or whether it be academic, I could help these women. It's just a matter of giving, showing them the path on giving that large on day Just start, you know, floor below growing and it's so beautiful to see how they flourish. So really, my background isn't in like health. Recent wasn't in health research, but somehow I just got into it. And now, like I'm a member of the James Linda Lions in bone, are we due be such an bone health? I buy all sorts of blocks for their website. I'm a member off. Also, it's really I just because there's so many I can't think of all the names, and I have every reason to be boastful because I worked hard for it. You very much. You need anything inside, say one thing yet, So I think one of the points is actually we. We worked This is a long term thing. We've worked really hard and speak for other people as well. Not just for ourselves, on just that. Well, this is our Katie team journey, like, literally one minute here. So we've come a long way. It's being an investment. From the start on, we have this really exciting research community lead research project that's come from us. We've developed it as women from the ground up on health literacy, women's health, literacy on, especially for women that don't speak any English, which were both involved with. And it is very exciting. So this is our little baby is well coming through. And it's growing. Yeah, right. So So, yeah, we just have to plug that one. Okay, so thank you very much for that very, very interesting talk. I think it was worth going into a deep breath. You don't have on your presentation. Let's give them a round of applause. Please. They say it's not their job. It's their fashion. It's deep down in their hearts. They've taken it to another level. Maybe we were listening to a Charlotte Allen's presentation. Um, she is Ah, uh, maybe just introduce yourself if you don't mind. I'm running late, Onda, uh, then we will have a bit of discussion on board, so welcome. Thank you dot Hello, Ron. Thank you very much for the invite day, and it's a hard up to follow. So, uh, thanks very much. And I'm Charlotte Alan. I'm a program manager for global health at the Medical Research Council on, But, um, that for those of you who don't know the Medical Research Council, we're arms length body who provides research funding on government research funding. Today, I'm going to speak about some of the opportunities that we have for maternal and neonatal health research in our global health board on I'm gonna end with some questions that I really value your thoughts on our strategy and future direction. If we don't have time now, I'm around over the break and over lunch. So, um, plenty of opportunity. So a little bit about the history of ah label have funding and specifically, in return on, you need to how, um prior to 2020 we funded able health through off ah, research boards and panels on Then we would also have strategic cools in party areas. Such a small town and neonatal health Onda The's party areas would normally born out of got identification of gaps in our portfolio in specific areas on dystrophy. JIC priorities would be built. So we along with um and I hr realize there was a gap in the portfolio for maternity health research on d. Devote a cool to address the burden of maternal mortality, maternal and neonatal mortality and morbidity in lower middle income countries. On this strategic cool had total of 30 million lbs allocated to it on the first round. Waas. Just as that we then developed the Applied Global Health Research Board on that priority area got brought within the board. So I'll talk about the, um strategic cool first. So the cool was in 2019 on we had 100 33 applications a fantastic ranger applications on. As you can see, we funded 22. So that was seven fulls which were each up to about 1.1 million lbs. Onda Yeah, on 15 seed awards which each up for around 100 20,000 lbs. So it was 7.2 million lbs in total on the awards that the areas that awards were not made in where Abortion, respectful care, cesarean section on contraception. So around two, we highlighted the postnatal period. We still accepted applications and a wards in all areas, but highlighted that the postnatal period was somewhere where there was a gap. Um, we had still know applications in around two involving respectful care on, I think, due to the fact that we highlighted this postnatal period, there was a reduced number of obstetrics applications as well, so you'll see that the applications were invited that were invited. That's invited to the full stage to submit a full review. The backdrop off around two was around 2020 on the odor cuts on also developing, I replied Label Health Board. So I'll take you through the board and then we'll go back to what we managed to fund from around two. So, as I said previously, before 2020 we funded global health through our boards are regular board and panels and strategic cause. We then launch the Applied Global Health Research Board, which was on opportunity to provide some predictable, repeated and consistent methods of funding blow able health research across the entire range. Um, we have to meetings per year on that is a process of outline stage on. Then the applicants that are successful there would be invited to full stage. It would go through a full pill of you process on. That would be a funding panel at the end. The ream it of the board is really varied. It's applied research. They were looking to fund research that will have a direct and practical health benefit on. But it's also a unique toe MRC in the fact that as well as funding UK applicants, you KP eyes here working in a critical partnerships with P I co eyes from learn middle income countries, P I Z are welcome from low middle income countries as well as part of the board. And as part of these identification of gaps in our portfolio, we've got four highlight notices. So the first three on bees highlight notices again, we've identified gaps that that's not to say well, only fund in the area. It's just areas that we would particularly encourage applications. So we've got early childhood development. I lessen how on implementation science I could make the size available instead of reading about it on butter, know and you need your health. So that remains a priority area for a Marcy global health, and it also will be one for the foreseeable future as well. So, as I said before, we had 22 outlines that were invited to submit full applications. So we had 22 outlines. 10 were invited to submit full applications. Funding was then cut quite drastically. We ended up having only about a third of our budget due to the odor reduction on. So during the whole process of the plague over Health Research Board, we were still able to make seven awards on excitingly two. Of those seven, we're within the priority area of maternal neonatal health. So one of them was the measuring the medium term impact of school based interventions as girls transition into adulthood that had a strong maternal health theme. On the other one, Waas see safe. So the 2.2 million lbs award for our first program, grant in maternal neonatal health for Optimizing Maternal and Perini two outcomes three safe and appropriate C sections in loan majority come countries. So it's really fantastic result, especially against the backdrop of what's being a really challenging couple of years. So now I've got a couple of questions. I hope it's not too cheeky to use my slot to ask for some of your thoughts on. But as we are coming back out of these challenging couple of years on, funding is starting to become available again. We're gonna have to rounds of the product label Health Research Board per year on. We will have maternal neonatal health as, uh, highlight notice is a priority area for the foreseeable future. I wondered if, uh, firstly, to what extent should we be narrowing the focus of this highlight notice? We saw that when we went from around 12 around two, and we highlighted postnatal care that actually the number of applications and the impact that had on people applying did it did change the number of applications on. We started to see gaps. So should we be knowing focus it all? Or is that something? Actually, we should be saying we will fund the breath of maternal neonatal health research on Go off the back of that, though we still haven't seen applications in the areas of wash in and contraception both rounds one and two. Should we be highlighting those areas on. I'm saying a specific need or any others where where we've identified gaps further is they're consistent expertise, gaps within proposals. So proposals are leaving out some really key areas or focus or members that would strengthen a proposal on the sorts of things are midwife, emperor or economic evaluation and different lows or settings. And finally, and it could have been a whole presentation on its own. On we see a lot of applications from specific areas. How do we increase our geographic reach? So West Africa, South America on Southeast Asia at the moment are all under represented in what we fund but also what we see as applications. So how do we How do we increase our reach and what County MRC do to make the community aware and toe help? That sort of advocacy part. So some quite big questions there, and I'd be really happy to chat over the break on lunch on. But if you had any questions or ideas for the applied to be able to research board, the next deadline is the 28th of July, So it's coming up. I'd be happy to chat or if you wanted to send in, I'm a one page or or any eligibility checks that the email address is below. So thank you very much. Thank you very much. I think this is interesting to see what happens behind what we submit as applications. Those off us who come from the developing countries. We are working with universities here, and then we here or, you know, we pretend this application and the funding is all, you know, withdrawn. So we don't have on then. Okay, Some amount of funding has come back, so we may be able to do a small component off that. So it's interesting to see what happens on the ground with, you know, the availability of funding and how the funding process. So let's see if there's anything on the online platform. Not yet. Not yet. Okay, Andrew 100 weeks. Thanks very much for that, Charlie, on the, uh, it's interesting working MLC with NIH are because the night child previously has dealt with the commission calls process of getting in, yet seen getting previous guidelines and identifying very specific issues that they want research proposals in. You haven't done that. Although I see that the the the highlighting highlighted areas is not towards it. I wondered whether and I hr have, uh, considered that as as an option of saying Actually, this is another studied area like like postnatal care in saying this is something we specifically want that highlight and we looking for applications on this This aspect? Yeah, definitely. So we do work across the kind of breath within a NIH are in terms of where my developing strategies on be developing calls in areas where they've highlighted that they have a gap. A swell, I think speaking for any a night, or is to whether their strategy is going towards that way. I'm not sure, Tool, but it's, ah, definitely a to a conversation communication line. And I think the need to fill gaps is always really important. And as funders and as cof unders, it's always better to have almost a know, overlap or toe have areas where we really want to prioritize rather than areas where we're both stepping back and saying, Actually, you go ahead on, and so we continue to work with them. But I'm not sure how that strategy will change in terms of strategic cause versus and more open board. Thank you, Charlotte. Way you had post, I think three or four questions. Is there anybody else would like to maybe make a comment, Yes dot Hi. I just wanted to, um, sort of propose a topic. I suppose so. One thing I'm really interested is around medications and pregnancy. Eso I have epilepsy, and I'm sure most of you would have heard about the problems with the medications. Associate it with a lapse in pregnancy on the impact it has on our babies on is not just our babies, but it's they're long term health throughout their life cycle. So one of the things is difficult for us is that we it's difficult to make decisions because the burdens put on us without really they're being much evidence. So I just wondered if there could be something around medications and the impact of medications on pregnancy on day, Not just, you know, thinking globally. What are the prescribing patterns in different countries? Because different medications have probably prescribed in different areas on what that impact is in in different locations. Yeah. Thank you. I think that would be amazing idea. I mean, it would cover the whole breath from maternal NATO health all the way through to early child development. I'm probably adolescent, half a swell. So health cost. The life course is a really important area, not just within a month. Global health, but as MRC strategy as well. Be great to see a proposal. Yeah, that looks like that. I mean, was there Birmingham The last question. How can you increase your reach? I think there are members here already can help you. One is the glow community because most office are the ones who are actually doing the research here in UK so we can help disseminate to the low members. The second one is our see boogie because our see what he has got his reach through its membership across these countries on That's also the global health is another way we can do it. The third one is not being done, is reaching to the women on the public So and this is something that we are keen to work. It's C safe and other programs that have been funded through MRC because compared to off the work, we're doing an HR for you cave under studies that we have a large and very visible of patient public involvement. Engagement. It has been a challenge because the concept off PPIE doesn't actually exist in many off these places. And this is something which we are keen to work together with MRC and then support what we can do to make sure the work we do are actually based on what women and the public actually want on need in these countries. Um, I think I will go to David High and things. I thought it was really excellent that for these calls, you can have PICO from low middle income countries. But I think especially with welcomes, change in strategy. The opportunity is actually for investigators from the middle income countries. Get their own funding. PhD Junior Investigators Leadership Awards is disappearing, So I don't know if there's any opportunities or thoughts about how you can help build that capacity so that you can put him competitive applications. Yeah, course so in terms of building research capacity, and it's something that we're definitely very keen on. An isn't is another area Crusty Strengthening is has to be built into all pose for the Global Health Research Board, but is an area we're looking to fund individually as well. So at the moment we have our African research leaders scheme, which is specifically for that. So the transition from PhD to independence in, um in sub Saharan Africa on Do That's Bean really well received on it's It's been fantastic to be able to fund. It's early career. Researchers in Africa with a U. K mentor on both come apply with Research Project on D, come and are interviewed on Ben are awarded a small research grant, but with a huge amount of training and capacity building in country opportunities. That's the kind of thing that would be fantastic if there was more funding or opportunity to Teo, expand it as well on something that will, yeah, continue to think about. Okay, runny, we'll end with yours and then if there's anything online, so please think we could certainly from through the college help you to disseminate this information from a secular said. We have a wide membership, especially in Southeast Asia, not so much in South America, and some invest Africa. But I think we have people here who can do that for us. So certainly happy to help with that, Um, I think it's important to include abortion and contraceptive proposals. I think if you aren't receiving, it is probably not going to the right people. Yeah, so I think it's the outrage. Invisibility off this on specifications fix. Now most people have won't be surprised if I say one neglected area. Is Perineal drama especially upset again this winter injury, which has got huge implications on women? I have been festering camps in Africa and most off the so called rectal vaginal fistulas are actually on a collected sphincter. It is on, but this really has a huge impact. And if if you could specify, it's a neglected area not prioritized on because people don't die from it off and on dying from it and you don't get funding, it's quite difficult to get funding. So I would love to see something. Where the emphasis on that thank you. Thank you very much. Let's go to the online platform, please. We have a question from Wendy Graham, who says with the MRC welcome proposals which spanned the four priority areas IgI implementation science for maternal and neonatal health. Oh, yeah, Completely. So you actually got to mention that you'd expect there to be more than one highlight Noticed to be here in some areas. And that's fantastic. Yeah, great. I think. Thank you very much. And let's give her a round of applause once Charlotte has taken us through the funding process and what we can do to all try and get into that funding. I know we have taken up 10 minutes off pretty break, but I think now I and, um yes, Ms. Presentation was just something I couldn't stop. So thank you very much for that. Very, very interesting. And, uh, I think everybody presentations this morning has been very interesting, So thank you.