Keys to Building a Successful Interdisciplinary Program-Funding the...

And then with that, um, I will turn you over to Olivia, uh, who will talk about the role of the fertility navigator. All right, awesome so um. As my slides load, I hope everybody's excited about Onco Fertility as I am. Um, I am the patient navigator of fertility Preservation. Um, at Cincinnati Children's within our comprehensive fertility care and preservation program, so Olivia, you can tell us how critical the role of the fertility navigator is. Do you, do we always call you our heart and soul of the whole program? Yes, and they're not just trying to give me a big head. This role is absolutely crucial to fertility programs and really identifying your champion who can like laterally integrate all these disciplines that are involved in making this happen for our patients and families really, really makes this a crucial. Role to help get everybody together on the same page and to just really be that main point of contact um and really just being to the face of the program that people can trust and go to in any time of need when it comes to onco fertility. So throughout my um slideshow I will be addressing a couple things um of course I wanna talk about the role and why it is so integral to have as a part of your fertility team. I'm also going to be identifying some of the barriers when we're working within our complex medical system and how with identifying these barriers we can come up with interventions that are specific to the um fertility navigator so that we can hone in on those interventions and really kind of like own the responsibility of them um within the team. Um, I'm also going to talk about the consult process, um, and talk about the prepping of the consult, um, the consult from the patient navigator's view, um, as well as talk about the follow up, um, and then as well as identify why the patient navigator is so important even through the continuation of care. So you might see our face in the beginning of your diagnosis and we're always gonna be available throughout, but why we'll also be there at the end and into your survivorship. So um you know the patient navigator may look different at all of your institutions. This may come within different roles, so maybe a patient navigator, may be a medical assistant, a nurse, a nurse practitioner, but I think regardless of whatever personnel you put in this position and what fits best at this time and in your program, everyone has the same goal, and the goal is going to be that we're going to assist our patients and families through the onco fertility process as seamlessly as possible. The Patient Navigator infertility programs are going to be working with patients with malignant and non-malignant conditions, but again, both, as you know from our presentations today, all have a common denominator of having some type of treatment that is going to impair their fertility. So being able to identify the types of treatment and when you are when you are getting thrown multiple referrals, being able to say what is the most acute patient that needs to be seen and what referrals should be expedited to move very quickly and with that comes time frame and being able to really prioritize who we should see first in terms of whose therapy will be urgently starting. Um, the patient navigator is also going to be supporting the patient and family throughout the consultation process through education and coordination. And I, I need to go back. There we go, um, and also, um, you know, as the Onco Fertility Consortium puts it, um, you're going to be kind of, you're the shepherd of the patient so that we can achieve this seamless care through this complex medical system and being that personal, that, that point of contact through the multiple services because as we state. We do work as well with outside hospitals where we work with UC to send some of our older patients for Usight and when you're also adding another layer of maybe an external facility, there's just more ways and more gaps and more barriers that can happen and breakdowns in communication. So really formulating that bond and being the point person as well there. We also act as a ref um a resource to the referring team. And another big role too of the patient navigator is to identify programmatic process successes and improvement, and sometimes this may just kind of slap you in the face as you're going through the process because you're living in it, you're in the trenches, you're the point person, and then sometimes you may not quite see it when you're going through your day to day tasks, but that's why it's important to really engage in some quality improvement work which we'll be talking about shortly. Um, but one of the biggest things was maybe even starting a database and then that way you can really look to see where your successes and failures are and really looking at things, um, over a period of time and it's very important as well for the patient navigator to be able to speak to the most up to date research um and with that being said, when you're in consults and you're talking with families about research possibilities for preservation, you wanna be able to speak with families about. All right, what is going on out there in the literature? What is the most up to-date knowledge? If we don't have percentages of success rates, then we should be able to give numbers of maybe like we've mentioned, how many pregnancies there's been. So really being able to speak to that literature and guiding parents to the correct resources. So as we integrate throughout all these teams, our fertility team in and of itself, as you can tell, is a multidisciplinary effort. So our team has oncologists, we have adolescent gynecologists, urologists, pathologists, we have, um, out, uh, we have external sources that we're working with to help build educational materials, but. Able to really connect within your own team and as well as take it to the next level of working within what we call CBDI but our Cancer and Blood Diseases Institute, so not only are you trying to be the point person within your own fertility team but taking it to the next level because even within our Cancer and Blood Disease Institute we make up there's 4 different teams that we work with. We are broken up into 4 teams, so we have our bone marrow transplant team, our liquids and lymphoma, our solid tumor, and as well as our neuroonc. And although we're all encompassed in the same CBDI, they all function and work very differently. And so the patient navigator is able to identify those processes and be able to really distinguish. How the referral process works. How do some teams work maybe more inpatient than outpatient. Some may hear about patients a month in advance. Others may find about their patient in the emergency room the night before they're diagnosed. So really being able to effectively navigate all of those teams. And that is that slide. So as we're trying to laterally integrate CBDI with the fertility team, obviously we had to identify um barriers that could come up um and one is you know how can we communicate effectively and efficiently um how are we going to be able to uh make sure that each and every patient is identified we may think that. We're doing a great job by seeing the two patients that we heard about this week because we saw the two patients, but how do we really know that there are really only 2 patients? And I think that's where a lot of institutes may struggle is how do you even hear about all these patients, um, you know, you only do as well as you know you are, so we need to have a base. We really need to have a list to cross check how we're doing and how can we ensure that patients and families. Are receiving the right care they need before therapy if they haven't time to elect fertility preservation that they're making sure they're being taken care of during and then even after if they miss that opportunity to be able to do something, do they have an opportunity after therapy and that's where the patient navigator can make sure that you know they are tracking these patients that did miss that opportunity and we can meet with them later to figure out, OK, do we have time after. So interventions that we came up with to help identify these barriers, um, some were actually just kind of coming up with, I would even say like just being there in physical form and showing up to interdisciplinary team meetings and that really was a big game changer for us as well was having, um, you know, the patient navigator go to weekly meetings that the different teams have in CBDI so attending those meetings, being present, identifying patients within those meetings, and also cross checking. Ourselves on all the patients that present in identifying the eligible patients for a consult because not every patient may be eligible for a consult, so we've come up with inclusion criteria and exclusion criteria and so when we identify the patients, we will make sure even on the database we do say why someone was eligible or not eligible, but these lists can help us really hone in on the patients and I think it's important not only to attend these meetings to learn about. Patients, but to also let teams know how they're doing because just as much as we want to hear from them, they want to hear from us too. So I think it's really empowering for them to know that they're doing a great job referring patients to us and they love hearing about the updates you know we did 3 OTCs this month, 4 patients sperm banks, um, and knowing how we're doing in terms of outcomes data. So I think that's really great too to have a presence and then for our electronic interventions. We just knew that we had to be available and there had to be multiple ways to be available because communication is key to the success of all this. So coming up with our fertility consult email address, um, was a great intervention that you could tell really increased. Our consult rate and this email address um we have a disclaimer on there saying we have 24 hours to get back to you if it is urgent um I carry the pager you know we have a pager going Monday to Friday um if it's a weekend it goes to the on-call gynecologist or urologist. And when patients present, we also have multiple ways to hear about them through our Epic system, which is our electronic medical system here and we basically have now an order set so when a patient presents, you can actually put it into Epic and the order set will populate a page, an alpha page. It also goes to our Epic in basket, and then from there we can take the whole process and basically run with it, but it's great too that we have. Multiple ways to identify these patients because this way when we're able to start that communication we're able to really work with the primary care team and find out when is it appropriate to meet with these patients and families and I think that's a really unique position of the patient navigator as well because you don't just get a page and then go run off to the room and see a family you're starting this whole process with the fertility team but you're also engaging with their care manager to say. Are they in a good place? These are very vulnerable situations. We have very sick patients, and it may not be the best time today to go see the patient. Maybe tomorrow is not a good day, but working out to figure out what's best, and that helps our patients and families feel more comfortable with us. I had on there a desk phone which may seem pretty um archaic and funny that like that would make such a big difference, but having a desk phone has been great because a lot of this fertility work can actually be done on the telephone when it comes to consults because here at Cincinnati Children's we see multiple patients from all over the world and many people will come here for bone marrow transplants and some of these what we call more elective transplants, they have a little bit more time to prepare in coming. So if patients we know are coming from other states and other countries, if I call them knowing that they're coming for a bone marrow transplant and high risk therapy to infertility, we can start these conversations over the phone, and I can direct them to such things as our website and some of our tools so that they can start feeling empowered and being able to make this decision before they get off the plane and we're getting BMT going in 2 weeks, and these patients have more time to think about it. So I work a lot. I do a lot of telephone consults as well. So the consult from the eye of the patient navigator, um, when a new patient presents to CBDI like I said, we have multiple ways of getting the consult um we then start the process with. A chart review. So we're able to, you know, I'm able to figure out has this patient ever been exposed to chemo? Is it, are they brand new? And we're able to pull those records and figure out how quick, you know, what kind of diagnosis they have, how much time do we have, and through the chart review and talking with the care team and the care managers, we can figure that out once we're able to identify the diagnosis they have and the treatment plan, we then of course send it off to the oncologists, and that is where, um, we're able to come up with our fertility, um, risk assessment. But part of that panel, which is great, we have a fertility lab panel, um, I think that makes our institution pretty unique too that we wanna make sure we grab baseline fertility labs on each and every patient. So let's say like our females, we grab a baseline panel of fertility labs, um, and so that way even if they don't have an option for fertility preservation or they do, we at least have something to compare when they're off therapy to see was their anti-mullerian heartburn affected, um, and I think that is great too to just have that baseline. So again, once we um find out the risk assessment, um, Doctor Burns or her counterparts able to give us that calculation and our categories again low, moderate, or high, um, we then take that and we, um, I take that risk assessment back to the team. Um, either myself, the gynecologist, or urologist, depending on the patient, the time and availability, one of us will go see the patient. Um, we have a very standardized approach to our consult, so our dialogue is all very familiar, but it's obviously, um, going to be critiqued to that specific patient. And then we have folders that we came up with. Um, in these folders we put specific handouts to the patient and what preservation options, um, we can offer them. And then, um, with that, we also, unfortunately, couldn't show the video, but we've got some great educational materials through um Livewell, um, and we put some information from LiveStrong as well. And this again are the shared decision making tools that Doctor Hefkin reviewed, um, but again we picked specific tools to the patient. So regardless on who did the consult, whether it's urology, gynecology, myself, the, the post-concept follow up is um the one of the main roles again of the navigator, and that is to make sure that every patient who has an option to elect fertility preservation has some type of follow-up conversation whether that's over the phone or inpatient, but we do our best to make sure that everybody um. Receives a call within 72 hours. Sometimes we may not even have the luxury of 72 hours and we got a call even quicker, or we might have a little bit more time. But from there if we find out what the patient elects to do, if they do elect something, we know where to go in that process. So whether it's sperm banking, making sure that we coordinate that with the outside hospital and set up a time that is appropriate for the patient, getting the correct labs, embryo oo site, making sure we. Get them to the um the correct REI doctor and send over their records, and ovarian tissue cryopreservation or the testicular tissue study involves a lot of research coordination. OR scheduling, pathology needs to be notified, and as well as off-site facility storage. So a lot more involved, but these can all be pretty, um, laborsome processes. But it's good to have again one person be the point of contact of all of this. And as well as the patient navigator is able to help identify when funding or if there's financial strains to family, and we here have actually worked really well with our social work team in identifying patients that may be at a financial burden and even maybe paying $75 for a storage fee is just way too much and so working with them to help allocate philanthropic funds that we have worked so hard to get for our institution is another role. Um, and again, all of these preservation options are great, but they do come at no small cost, so always being aware of that. So the fertility workflow again this chart is um similar to the one that Doctor Hefkin showed but I really kind of just honed in on the role of the fertility navigator from obtaining the consult, reviewing the records, reaching out to the oncologist, working to see who is going to be able to perform the consult, falling back with um getting the risk assessment and then the whole follow up process, so making sure that all the key players are lined up on um what the patient elects to do. And I'll touch on survivorship because again like I said um our interactions with the patients don't stop as soon as they have their initial fertility consult and we have definitely have a big presence in our survivorship um so we are doing our best to see our patients one year post chemotherapy and making sure like I mentioned we do that. Fertility panel, the lab draw in the beginning and we want to make sure we do it at the end so we can compare and see how their fertility was impacted and some patients may again have that window of opportunity. So um again we reestablish care, make sure that they're doing well, and we go back to oncology and make sure our risk assessments stay the same again, treatment can change. From um when it starts, so we always want to make sure if it does that we reevaluate the risk, um, and we're going to make sure we provide any resources for fertility preservation if it's necessary in survivorship, um, as well as just keep the ongoing discussions even if their fertility looks good one year off of survivorship we want to keep drawing those labs each and every year because again there could be that window for post therapy intervention such as ovarian tissue cryopreservation or the oocyte cryopreservation. Um, a big question I get from my institution is funding. How do they fund your role? Who pays for you? I always get these types of questions, which I know, um, that is a struggle out there. So funding for the navigator can be completely dependent on your immediate team, and it can vary based on position. Like I said, it doesn't mean you have to be a nurse or an NP or a medical assistant. It may be someone that you feel in your team. Personnel that fits the role, um, how I started with this was having some like FTE flexibility and kind of like begging to just get a couple hours off, uh, getting a couple hours from my FTE to dedicate it towards fertility preservation. Started with 4 hours, a couple months later turned into 8, and then increased to this being my full-time job, but really looking within your institution to see, are there any. Is there any way to try to find some academic, um, research, um, art funding for yourself and grants, so, um, just to keep looking within your institutions and not to give up. And some takeaway points, um, the fertility navigator, again, you are the point person, the liaison, the lateral integrator, and you are an advocate. You are your patient's advocate and their voice during this time. Questions? Our navigator is the glue that holds the team together for sure.