The Disconnect Between REI Patients and Providers with Tracey and Sara from IVF Babble

In this episode, Griffin talks with Sara Marshall-Page and Tracey Bambrough, co-founders of IVF Babble (https://www.ivfbabble.com/) about their online magazine and other efforts in the fertility community. They delve into the differences between an online magazine and a blog, the value that their site has for providers, their work with My Fertility Buddy (myfertilitybuddy.com), what it means to have a pineapple badge, and much more!

Griffin: Today I have Sara Marshall-Page and Tracey Bambrough from IVF Babble. IVF Babble has become one of the most popular media outlets for the infertility community, an online magazine for the infertility community. Based in London UK, Tracey and Sara have come into our field from both the patient side, but have also had a lot of experience with the clinic side coming to conferences like MRSI and ASRM where I met them originally and made fun of their terrible networking. They came all the way from London to Chicago to network with each other...I think they’ve since done a better job. And because I find you both so interesting, I would like hear Sara’s introduction of Tracey, and then vice versa. Sara, let’s start with having you introduce Tracey.

Sara: Tracey is co-founder of IVF Babble, and she is an amazing woman who thinks in a totally different way than I do, which is why IVF Babble works. Because she thinks outside the box, and I thin very much inside the box. And like myself, she’s been on a fertility journey, but hers was a lot longer than mine, and a lot more complex. Working with her is the perfect partnership, because we both have something to give. That’s my intro to Tracey. And I must also say that Tracey was very successful in the end with her fertility treatments, and is now the Mummy of twins.

Griffin: That’s a good intro, Tracey can you top that?

Tracey: No, absolutely not, that’s so embarrassing! (laughter) Sara is an incredible human being, incredibly caring, kind, all those wonderful things, and she went on quite a fertility journey, as did I, but we covered it from different angles, and we certainly meet in the middle and compliment each other in the way that we think. She has an amazing view from the patient perspective, but also incredible links with celebrities who are constantly wanting to share their stories with Sara. Just love her to bits.

Sara: Aw, thanks.

Griffin: You two embarked on quite the venture together, because IVF Babble is not a blog, it is a much more involved venture than that. So, before we start digging in to the difference between what an online magazine is, and the media vision for IVF Babble, talk a little bit about how you two came together, and how this idea formed.

Tracey: OK, so I was going through my fertility journey, which spanned across ten years, and I was effectively misdiagnosed, and sometimes pushed to one side because of my age. It took

the right specialist and the right tests to find that there were 4 things wrong with me, that then gave me my amazing miracles, my twins. Throughout that journey, there were other friends going through IVF and people that I work with that weren’t discussing things with me. I didn't even know apart from one of them, that they were going through the same journey. No one was talking to each other, sitting in waiting rooms, everyone looked completely in isolation, and yet we were all going through the same thing. Just kind of looking online, I remember trying to find magazines or something that represented or reflected a magazine that I would read weekly or monthly. There was nothing there, just blue and white scientific websites that were quite scary, basically. When the girls were three months, Sara and I met up, and both of us were about to set up basically the same kind of thing, so we said let’s join together, and that’s how it started - over to you Sara.

Sara: So basically, within my 4 year journey, I would go and speak to my consultants and they would talk to me about my treatment, except I’d go in there and not really listen to anything, I ‘d hear them talking, but not take anything in, to the point where I developed severe OHSS, I mean pretty horrific, because I ignored all the things the doctors had told me, because I hadn’t listened, and ended up in hospital for two weeks, with fluid filling the lining of my stomach and lungs, it was horrific. I remember searching online just for some guidance as to what was happening to me, because I just wanted to hear from other people if they have been through it, and I couldn’t find anything other than some dodgy old forum from God knows where, with a few women telling me to drink Gatorade. It was at that point I thought “I want to do something. I want to create something that is going to help women that may end up in this situation.” and it was not much later that Tracey called me and said she wanted to do something, and so we began.

Griffin: One of the things that doctors sometimes complain about, or practice personnel complain about, is that patients come in with so much information, even if the information is correct, it’s not necessarily customized to their diagnoses of prognosis, and they come in with all this information from the internet. I want to unpack that with you for a little bit, talk a little bit about patient media habits and how this is transforming. Ultimately what we are talking about is that we are starting to have entire media networks that are just about infertility. If people think back to 70 years ago, that if they had BBC and a couple channels in the UK, and a couple channels in Canada, a couple channels in the US, there were a handful of radio stations in any given market, so pretty broad interest, one or two newspapers per city, and then you have cable, and you start to have this fragmenting of interest like sports and drama and news. Now we are at an age where it comes down so finite to just specifically about the fertility journey and there's entire media networks that are forming, yours is one of them. Talk to me about the difference between a blog and an online magazine, because I think most people listening will have no idea that an online magazine is something different than a blog.

Sara- A blog tends to be somebody’s personal story, one person’s stories, one person’s story with their opinions and their experiences. The difference with IVF Babble is that it is a magazine, with articles that are published every Thursday, and you are getting the best of both worlds, because you’re receiving articles written by doctors and experts, consultants, embryologists, everybody in the medical field, so you’ve got that proper trusted guidance from the medical field. But then we’re also incorporating stories from people going through the treatments, so you’ve got that balance. What you’re not getting is patient-to-patient guidance, which as you know is so, so wrong. So that’s the difference between a magazine and a blog, it’s unbiased, it’s for everyone, and it’s not just one person's opinion.

Griffin: So it’s being curated, someone’s finding these experts, scheduling, giving them a topic, editing the content they come up with, talk to me about this process.

Sara- So, we have a editor called Claire who's absolutely wonderful. The way we work is we have our magazine, and then we have our massive social media presence, especially on Instagram. So, we have lots of conversations with our followers and we find out what questions they have, what queries they have, then we’ll sit down with Claire and look at the frequently asked questions and then we will go to our experts and ask them to answer those questions. Those doctors and experts, not only are they answering the questions we are asking on behalf of our readers, they are also coming to us and saying, this would be a great article to publish this week because it is new in the fertility worlds, so it might be something that the patients hadn’t even heard of, so it’s current as well, which is fantastic. So, that’s how the planning goes, with the balance of the website and the social media work work so perfectly hand in hand.

Griffin- Now that we’ve had the podcast going for a few weeks, people are starting to email me and saying can I be on the show, I want to talk about this. They are coming to us with topics now. Have you seen the same phenomenon, is that increasing or the same with people reaching out to you to be in the magazine?

Sara: every day.

Tracey: In the last two years, it has gone up exponentially, and especially in the last year, so I don't know whether it’s the 40 year aspect, or what, but there was certainly in the UK an awful lot of media interest last year. Every single week there was something else being discussed, whether it was on television, newspaper, or radio. We’ve just noticed that we are now getting people from around the word contacting us every day asking “can we get involved, can we talk about this.” It’s quite extraordinary, definitely the industry has changed.

Sara: Also, they know that we have this direct connection with patients. For example, we had a lovely chat with a consultant recently who wanted to know - he said “how do you think patients like to have the news delivered to them in terms of how successful it’s likely to be that they will have a pregnancy - do they want percentages, you know.” So we went on to our Instagram and did a post and asked the question, and then he had this massive conversation to read through. So, people are seeing that we can answer their questions from the people they want the answers from, very very quickly. I mean, our instagram has gone up to 13.2 thousand followers, so it’s a huge audience, so it’s like a window to them really.

Tracey: I mean, in essence, Instagram has grown literally 3 thousand in the last week, three days, but actually on top of that, we have a readership of about 125,000 per month, and so we are inundated with queries and people wanting to access our experts and who do we suggest, it’s grown a lot.

Griffin: So, let’s give somebody a crash course in how they might be able to break through that massive noise you are getting in solicitations of being features in the magazine or having a story covered, because you are getting hundreds of inquiries - and I would encourage people that when people are thinking about publicity opportunities, the obvious option might be something like the Huffington Post, but something like the IVF Babble is so unique, because it’s a magazine that's been developed to this level - which most outlets in the fertility community have not been developed to this level yet, but it’s so targeted to the population. So, let’s give Jane the fertility doctor somewhere in the US or UK or Canada a crash course in their best chance of breaking through the clutter and getting featured in IVF Babble. What would they have to do?

Tracey: We have an editorial board, and so everyone that we bring on as an advertising partner would need to be overseen by that editorial board, because the one thing that we don’t want is having someone on board that we didn’t realize had some situation or background that doesn’t do our trustworthy aspect any good, so we would obviously have to put them by the board.

Griffin: So, don’t come with an agenda, we’ve put number one - If you are peddling a service, sounds like, get that idea out of your head, because the editorial board will sniff you out, OK (laughter) What’s next?

Tracey: Are you talking about how they come on board and what we do with them? Or?

Griffin: If someone wanted to write an article, a fertility specialist for the UK, US, or Canada, that had something really interesting that wasn’t tied to a commercial interest. What would be their best chances of passing through the editorial board or just getting a shot to have an article in the magazines?

Tracey: Absolutely we are in touch with consultants and clinics all the time, and we are publishing articles or breakthrough news constantly.

Griffin: Right, but you can’t feature all of them, so if someone wanted to be featured, what do you like the most, I guess, what are you drawn to that you are more likely to pick - either types of stores, or studies, or what core components do they need to have. Do they need to have a certain amount of research, or new topics that you are interested in.

Sara: Basically, we are a business, so we have partnerships with clinics, paying clinics who will provide content for us, because it costs money to run a big website like this. We prioritize our partners and our experts, that like we said, our board of advisors have all approved, so we go to them first. If there should be another consultant that isn’t a partner that has a fascinating article, then to properly .. then we would make an exception, without a doubt, because our reader is the most important person. What we say to everybody when they provide content, it has to be - we are a magazine, and we based it on the style of Marie Claire, so the style has to be very straightforward, as far from the sort of medical websites as possible, so very coherent and very straight talking.

Griffin: That makes sense, and it also explains the relationship that you have with clinics, which I think explains seeing you at ASRM and MRS. How did that come about, when did you start approaching clinics, and what was that like?

Sara: At first, (I'm trying to think about the first conversation, it was very strange the first time at ASM

Tracey: MRSI

Sara: it was that the first one we went to, yes, it was very strange when we went to MRSI first, cause we were invited to go along and do a workshop. We were so new, and to be sat in front of these clinics, everyone looked at us like who on earth are you? Cause no one had come across anyone like us before, so it was quite an odd feeling -

Tracey: I totally agree, it was that first year, no one knew about us, and you know, it was interesting - after these people left the room- when they came in to the room they just didn’t know what they were coming in to, and when they left the room - that’s when we started building a little bit on those relationships, which has come to fruition. But, a year later, we go back, and suddenly WE were approached by consultants and various others saying “oh we wanted to come say hi to you because our patients are telling us about you” and in fact a couple of people- I find it quite embarrassing that they said - that we were the fertility version of People.com, which you know is amazing! So, now we have clinics contacting us.

Sara: I mean it’s so nice, when that partnership is really- the clinics that we have partnerships with, we always say to them, let’s talk frequently, lets share ideas back and forth, we don’t want static partnerships, it should be like Tracey does - thinking outside the box all the time, coming up with ideas together, and its working.

Griffin: What a novel idea, that you put something of value that serves the community in such a way that people start approaching you, that's a good lesson for marketing 101 for those listening.

Sara: Well, you know it's like yesterday right, I put a post on Instagram the other day with a quote from an embryologist that had told me that it takes 180 seconds or something like that from the moment an embryo is taken out of it’s little incubator and transferred into the woman. And so, in a phone call with one of our partners, I said how’s about you video that for us, you know? Because after I posted this comment, there were a few women going oh my gosh that's really frightening, oh my gosh that’s - you know, and so I said to the clinic film it, film it for us and show people the excellence of not only your lab, but the excellence of your embryologists, and your putting trust and faith- your showing people how brilliant your team and, and what the process is like, because you don’t know what it’s like. And so, they are loving that idea and they are going to go off and film that. And their last video they sent us had like 3 and half thousand views within 48 hours I think, so things like that, it’s helping them and it’s helping our readers, their patients.

Griffin: So, I’m really curious - Chicago was that first meeting that you came over to start meeting providers in the states. What do you notice as differences between fertility clinics in the UK and the United Stats - what jumped out at you first?

Sara: My fertility experience is I had my IVF from the NHS, which is totally different than private. It's not the most glamorous of experiences, and you’re left waiting for months of appointments and so---

Griffin: Just a little bit of background because I think a lot of people in the United States and Canada aren’t entirely familiar with the system works in the UK, so if you are going through the NHS, is it always at a hospital, of can it be at a private center that is funded by the NHS?

Sara - It can be both, but I was so lucky, in my neighborhood, they were offering - my borough rather, they were offering 3 rounds of IVF for free. So, my sort of experience is, like I said lots of waiting, because when it’s free, you just have to wait in line. What's your experience with your clinic, T, compared to the States.

Tracey: Well. when talking about having ICF, I didn’t go the the States, so I only have the UK as an example, yea it was quick, it was efficient, it was great. As far as how- Griffin, are you asking about how US and UK are receptive to something like IVF Babble, was that your question?

Griffin: That’s a good start, but yea, really the first question is did you notice really, any difference - in the way that they communicate, or think, or operate, and yeah probably in those categories - thinking, operating communicating.

Tracey: Because we’re in the UK, initially, that was a lot more conversation with the UK, because we weren't expecting to go global. Certainly it was quite hard in the first few months of being out there, and then people started seeing how others working with us were getting the benefit, and then when were at fertility show in London on a couple of occasions, we would have, at one particular time it was 5 deep at our stand. And then more clinics started warming more on the basis that they saw that we were sort of providing a hub of their potential future patients. So now, in the UK, it's quite easy, it's quite a smooth ride in talking to people and getting them involved in some way. As far as the States, it's a new entity, I think at first people thought we were MRSI, and people were a little hesitant for sure, and I think it’s only been in the last 6-9 months, because our States figures went up dramatically about April-May last year, and have continued growing. We have 42% UK/Europe 37% States now.

Griffin:I would all that an international following as far as the English speaking world is concerned. One of the reasons why I asked was because I think that there’s a perception that clinics in the United States must either oper, communicate, or think differently because most treatment isn't covered in most states. There’s 5 states where insurance is mandated, there’s not any states that the government is directly paying for treatment as with NHS, but I’m on the IVF Babble site right now and I click through to a clinic sponsor whom I won’t name, and I'm looking at their website, and it looks - if I wasn’t looking for S’s instead of Z’s and some weird phone number across the top, I don’t think I would notice any difference between UK’s clinics websites and a US clinics website. Even the name is very much a clinic that would be common in the United States or Canada. They are also advertising on your platform, so they are marketing, they have a website that is clearly designed to attract patients, it’s not just a billboard for somebody that is one of their few options because they are coming through NHS, so talk a little bit about how this comes to be. The paid side, the marketing of patients in a country that treatment is covered, or at least partially covered.

Tracey: I think it’s exactly the same, because we have the same situation. I don’t know if you were watching, or had seen, but we literally just delivered - its called postcode (lucky) where the NHS hospitals will offer or CCGs clinical commissioning groups will offer 3 free IVFs to one, and none in another of what would be equivalent of a state in the UK, so we delivered a petition to number 10 Downing Street on Monday. We had 102,000 people that signed the petition to take it to the Prime Minister with the unfairness of it all, because there is a lot of people that don't have access to the ability to have IVF or have the funding, so it’s very similar to the states.

Griffin: So at that point, is there a trend moving toward broadening the coverage, or do you think that this is the economic reality for some time in the UK.

Tracey: We’re try with the petition, were trying to make a difference We are trying to force the government to change. Basically, Clinical Commissioning Groups are given guidelines by something called the National Institute of Care and Excellence, and their guideline is that each clinical commissioning group should give 3 free IVFs to each person - they don't. There are people moving counties- the equivalent to moving states, to be able to access where there’s free IVFs available, and it’s so unfair, and the quality is not OK. So hence that’s why we decided to create a petition and inundated with signatures and comments.

Sara: 102,000. 102,000 signatures we raised.

Griffin: Do you get support from providers in an initiative like this?

Tracey: No, we’ve just done it on our own. We started the petition ourselves, and there’s a charity called Fertility NEtwork that we work with sometimes in the UK, that's the UK's national charity for fertility, and so they joined with is on the petitions, and basically created a campaign called Scream for IVF, so they were doing that alongside, and we've basically pushed it through social media and through IVF Babble for people to sign.

Griffin: A better question is, do you sometimes get resistance or a lack of wanting to be involved from providers because say, some people like to having the out of pocket compensation as opposed to whatever rate they would be beholden to through NHS.

Tracey: The interesting thing is we haven’t actually had any negative comments the whole way through the petition. IS anyone saying it behind our backs, maybe, but certainly anyone we've come across on email, social media, etc, we haven't had any negative.

Griffin: I’m happy to hear that. So, when I see what you're doing from not just being involved in the drive for expanding coverage from NHS, all the way down to the initial impetus of the magazine of providing the community and providing the information in this way - I always see a void being filled. You all are filling a void that someone or another didn't occupy and it needed to be occupied. What do you see is the biggest disconnect between what expectations patients have, maybe the information they are looking for from you that they are not getting from providers, or summed up more concisely- what’s the biggest disconnect you see between providers and patients on both sides of the Atlantic.

Tracey: I think it’s trust and clarity

Sara: Clarity

Tracey: Absolutely. I think as soona s we publish or put something across social media that works against what the patients want, that was obviously make us fail. But because Sara and I have come from a patient perspective from two different sides, NHS and private, at different ages, we have kind of a broader view and understanding of what people are wanting. And I also think that that's also why IVF Babble has done so well so far in so much that what they ask us for, we give them back. So, for instance, one of the readers was saying, “Oh, I never know what clinic to go to, how do I find the information, everything's everywhere, I don’t understand it.” So, we decided number one - to create a global directory, which is now myfertilitybuddy.com - but within that fertility buddy, we are creating a social networking platform. So there are two aspects. People are saying we need some guide, to know which clinics to go to, to read more about them all in one place - its all over the place and we want something centralized. Second thing, which is actually is as important, a buddy network. Because there are lots of people going through IVF or trying to conceive naturally, not working, different cultures around the world, of which some don't talk to each other at all, cant speak to their families, won't accept counseling per se, so we decided to create something called Buddy Net, which links all of those people across the work that are going through fertility issues. So, it could be “My names Natalie and I’m 32, I’m just about to embark upon IVF and I would like to speak with someone- Ive got to get in contact with someone that’s been through 2 IVFs and has been successful and is 33.

Sara:Everything we do- at the heart of everything we do is “what do we wish we’d had” and this is something we wish we’d had. When my IVF failed for the first time, the only thing I wanted was to find someone who had also just failed, so that we could sit, and cry, adn have tea, and talk about how we both feel. Nobody else understood. Talking to my doctors didn't help, talking to my friends didn't help. I just wanted someone that knew how I was feeling.

Griffin: I have found that people are skeptical that that's true. When I entered the field, I really didn't know much, I had been working with a few clinics, and I decided to reach out to peer support group leaders across America. I said listen, I'm a marketer, I don't know anything about your problem, I’m building a business, and people were so accepting in talking to me, and some talked to me for hours over a long period of time, and I compiled the three most common things that people were saying. I was looking for patterns. The most common things that people told me was that they were unhappy about in terms of communicating and receiving information from their clinic, was that they didn't get any connection to support. I said there's no way, coming in as an outsider, that it wouldn't be the first thing a clinic would offer new patients- here's the local support group, here some blogs, here's a directory of mental health professionals that specialize in this field. Then I started asking providers and they were like “yeah we don't really do that” and as I probed in as to why, they came back to some version of they don’t want to talk about it with anyone else…

Tracy and Sara: That’s so wrong! That’s rubbish!! Thats so so wrong...

Sara: People don’t want to talk to people that don't get it,

Tracey: That’s true.

Sara: PEople want to talk to people that understand how they are feeling. What I didn't want was someone to say to me :oh, cry it out be fine, start fresh next time” like oh my God, I don't need all that. I need someone to empathize, I need someone that understands what I am feeling.

Tracey: The thing is, clinics and consultants are incredible human beings in helping people have families and giving them hope That's amazing. And yes, it is all about science in that aspect, but, as a human being, we’re about emotion. So, you can’t just allow someone that has that make up to then just go into scientific issues in the moment and not have some form of hand holding or cuddles or warmth. It goes hand in hand.

Sara: It's grief. When you fail, you are grieving.

Griffin: and then theres a level that ok, maybe if they come to groups privately or are connected privately, and for most people that's true, but I think that many people are underestimating how many people are willing to have these conversations publically, and to me that's evidenced by how big your instagram following is growing, some of those are anonymous names, some of those are people's real names, and Facebook conversations. And you have a pin now, a pineapple pin, that is deliberately to starting the conversation, talk a little bit about that.

Sara: The thing is, I keep coming back to when my IVF failed for the first time. I was sat on the tube on the Underground in London. It was a packed train, and my IVF had failed, and I looked at all these people on the train and though - does anyone on this train have any idea how I am feeling I felt like the only person in the world, because I didn't know anyone who was going through IVF. I thought, if only there was a way of seeing how many lived had been touched by infertility. Whether that was because you've been through IVF yourself, or you've supported your daughter or your work colleague or whatever. If everyone on that train has lived had been touched by infertility, most of that train, half of that train at least would be wearing a pin, and it would have offered me so much comfort. We chose a pineapple because, if you look across the social media - the fertility social media platforms you’ll see pineapples everywhere, because they are the symbols of love, good vibes, good energy, in the fertility world. It’s subtle, it's not an “I've had IVF” badge, it's a “I know how you are feeling” badge, and people love it. It represents the energy, the good vibes that the TTC community give each other.

Griffin: You've both done so much, and I want to thank you for coming on the program, and I’ll let you conclude with just talking a bit about where you see IVF Babble going, or where you want it to go. Do you want to keep building this infinitely forever, is there an exit, I bet there's an IVF financing company or pharmacy that would love to acquire an audience that's captive at some point, whether it's exit or growing to a point, where do you want this thing to do in the next several years.

Tracey: Who knows what's going to happen in the future. Right now, Sara and I are so passionate about IVF Babble, and the things that we can achieve, and breaking the silence, adn in part to creating World Fertility Day and want to make a lot more of that going forward. And as long as we’ve got the ideas, and we’re able to help people and make a difference, we are happy to keep on going and we are loving what we are doing. What’s your thought Sara?

Sara: IT would be amazing to have some incredible financial backing to make IVF Babble even bigger, but it's “out baby” and we have such a duty to our readers, that we are not prepared to hand it over to anyone. We are here to look after people.

Tracey: Also, couple of other things we are doing, initiatives that I'm not sure you're aware of, is we set up a charity which was launched in november last year, and that was on the back of. In the 40th year of IVF, we gave away 15 free IVFS. We started approaching clinics and asking if they would like to do that to celebrate 40 years. Now we are giving away another 9 and the end of this month, and we;ve already been approached to give away more in another giveaway, which will be in March onwards. We felt that there was such an outpouring, and the emails that were being sent, literally sort of in tears with some of them, that was my only chance, and I wasn't one of the lucky ones, and so we decided, why don't we set up a charity which is called Babble Giving, which will basically be doing all of that and giving grants. So, there’s that, and we are also launching Fertility Babble which is all about fertility awareness for the young. So were making it much… but basically we’ve already been invited in to Cambridge University to talk about Fertility Babble and IVF Babble and …. is contacting us about it. We want to soften the whole situation. There's a section of it called “The F Word” which will be about Food, Fitness, Fashion, and Fertility. It's a more easily readable, and will attract people hopefully to learn and read about how they can protect their future fertility.

Griffin: You all have done so much all from building a community using digital media. If has been fantastic to watch you come in the the field, to build this from the ground up. I hope you keep coming back to our meetings on our side of the pond. I promise that one day I will come visit you in the UK. A pineapple badge has to be in my future at some point, Tracy, Sara, thank you so much for coming on to Inside Reproductive Health.

Tracey and Sara: A Pleasure. Thank you so much for inviting us.