Raising Awareness: What We Can Learn from Axogen’s Successful Patient Advocacy Campaign

Hello, everyone, and welcome to the Health Marketing Collective, where strong leadership meets marketing excellence. I'm your host, Sarah Payne, a health marketing strategist at Imprella Communications, and I'm bringing you fascinating conversations with some of the industry's top marketing minds. On today's episode, we're going to discuss how healthcare brands can leverage thought leadership to reshape public perceptions, influence behavior change, and become architects of a health revolution. In today's marketing mix, thought leadership plays a pivotal role in empowering consumers to make informed decisions about their health. And on the B2B side, thought leadership can help accelerate the adoption of new technologies by healthcare providers. To chat with me about this topic, I'm thrilled to welcome Emily Hansen, who is senior director of the Resensation program at Axogen, specializing in advocacy and education, Emily helps breast cancer patients and their surgical care teams understand the prevalence of numbness after mastectomy and what can be done to address it. In the work Emily and her team are doing at Axogen, she's helping to create a consumer health movement and to increase the quality of life for breast cancer survivors and previvers. She's leading some really amazing work that's making a positive impact on so many lives.

Welcome, Emily.

Thank you so much, Sarah. I'm happy to be here.

Well, before we kick this off, I did want to mention that Emily and I have known each other for a very long time. I think Emily and I figured it was somewhere around 16 years ago that we first met, and we have partnered together on many PR and thought leadership campaigns throughout the years. Emily's always been on the client side and me always on the consultant side. But we have a long history together and mad respect for one another. So if you notice a casual nature to our conversation, it's because we've also become really good friends over the years, and I honestly can't say enough good things about her. She's incredibly smart and talented and also really fun to be around. So I'm just absolutely thrilled to have Emily on the podcast. So let's dive in, Emily.

I wanted to start with Axogen's goal, which is to make sure that every woman who is diagnosed with breast cancer knows how common it is to experience numbness in their chest after a mastectomy and how that resulting numbness can negatively impact quality of life. I'd like to just spend a minute there if we can, but I have to admit that before we started working together, I. I didn't know that somebody could experience numbness after a mastectomy. So can you talk a little bit about the issue of numbness and why it happens?

Yes, I think that's a great point, too, because before I started working in this space, I also did not know that numbness was so prevalent. But I've learned a lot since then, and I think, you know, there's so much information out there about breast cancer. There's an entire month dedicated to awareness around it. There's a lot of pink ribbons, you know, a lot of support, which I think is great. But there are definitely some gaps as it relates to. To care. And when I think about the fact that There are nearly 4 million breast cancer survivors living in the United States today, how many of them are likely experiencing this challenge of numbness or pain or the combination of both, I think there's really an opportunity to address it. So the simplest way to explain why numbness happens is we all have peripheral nerves running throughout our body, and when they're working fine, everything's great.

Most of us can't even really imagine what it's like to not have them working like normal. But when you have a mastectomy procedure or surgery of any kind, and you're going to cut the skin and remove the tissue, those nerves run throughout the entire breast, and so they're going to be cut and removed along with the breast. And even though you can have a reconstruction to recreate, like, the look and. And the shape and size of a breast, if nothing is done to repair those nerves during the breast reconstruction procedure, it will be completely numb. And the simplest way to try to provide an analogy for people is many of us have experienced that temporary numbness after a dental appointment. If you imagine that across the surface area of your chest, but also being permanent, it can be a really debilitating thing that impacts quality of life, and it can even impact the safety for patients. There can have injuries like burns and cuts and things like that, or not even being able to feel your clothing, it's really disorienting. So there's a lot of opportunity out there to help educate patients about this challenge and the clinical community.

Do we know, Emily, how prevalent numbness is for. For those who've gone through a mastectomy? Do we. Do we have any sense for what that prevalence looks like?

We do. The published literature show that anywhere from 40 to 80% of people that undergo breast cancer surgery and mastectomy are going to have either some like, partial numbness all the way to complete numbness after the procedure. So the extent of it may vary person to person, but it's pretty consistent and I would say that's pretty true in the two or three thousand people that I've talked to in the past couple of years as well. It's really common. It's just not talked about.

Yeah, for sure. So you touched a little bit on what that experience can be like for women who are experiencing numbness. You talked about, you know, the possibility for, for some safety issues with burns and things like that. How does numbness impact quality of life for people?

Yeah, it can really have a huge barrier because when you're dealing with numbness, even if it's temporary in your mouth, if you think of that and how disorienting that feels, even for just a few hours, what it does is it disrupts your proprioception, which is your ability to understand where your body is in space. So many women will describe that it feels like their breasts are much larger than they are because they can't feel the border of impacts, the ability for everyday activities like feeling a hug from a loved one, child, friend, partner. Like I mentioned, not being able to feel your clothing. It can be even disorienting to try to exercise or go and do yoga. Can't feel things like a seat belt across your chest or how warm the water is in the shower. And you have to be careful about that. And if we're walking through doorways or things like that, it's actually easy to kind of bump your chest if you can't feel it and you end up with bruises and other types of damage as well on the skin.

So we know that the issue is numbness and obviously you were working in your work at Axogen to increase awareness about this issue. Can you tell us a little bit about your marketing objectives at a high level? Again, obviously raising awareness is important, but can you elaborate on your specific objectives?

So I really think of the marketing objectives for this space kind of in a three prong approach. The first one is raising awareness of the problem. And that's in multiple kind of communities. So that's with the patient community and even the general population, the healthcare clinician community, and also with advocacy groups that are already involved in the breast cancer space. And so we're focused on raising awareness about the problem, trying to provide some education around nerve injuries and what can be done about them. And then also we're trying to work at the same time with those that are involved in kind of the healthcare circle as it relates to breast cancer. So if you're diagnosed, it's not just one clinician that you're Meeting with and many times you're going to have seven or eight different people involved in that care. And so it's really, I feel like our job to help make sure that everybody has some level of awareness.

Because I think the sooner that somebody that's diagnosed with breast cancer or just at high risk in evaluating their options, the sooner in that journey that they learn about this, the more time that they have to process it. Because let's face it, when you're diagnosed with the life threatening disease, the top priority is of course going to be survival. But your expectations may change as your increase for survival improvement groups throughout that journey. And that's when those things start to become more and more important. Really thinking of it can save my life, but also what's the quality of my life going to be in the long run.

So we talked about how awareness is not particularly high amongst consumers, as you and I both personally experience right before learning, you know, and working with oxygen. What is the awareness level you talked about sort of the circle of, sort of the, the care team that surrounds somebody. What are, what is the awareness level amongst the various sort of healthcare providers that would interact with somebody who has, who is experiencing a breast cancer diagnosis?

Yeah, it's a great question. I think at least based on the work that we've been doing over the past couple of years, it seems to be quite low outside of the plastic reconstructive surgeon. And there may be several reasons for that. You know, every group has their own kind of specialty training, so they're not all going to be focusing on peripheral nerves. And then I also think part of it has to do with the patient journey. And so as you finish various steps of your care and you're going through treatment, you may not be seeing some of those same healthcare providers anymore as you move on to other ones. And so there's somewhat of a gap, I think, in a feedback loop for patients to be able to articulate kind of what they're going through and being able to distinguish what's different from post surgical pain or numbness and what's different about this kind of chronic or permanent numbness that exists. The other thing that I would say is, you know, even at the surgical, surgical oncologist level, I think there's some awareness that nerves aren't going to be cut and that sensation will be lost.

But for so long there was nothing that could be done about it. So I feel like it wasn't really discussed that much because it seemed as though there's a problem with no solution. And Just something that, you know, breast cancer patients are kind of forced to accept as part of their journey.

Yeah. And I. So great point. So I guess we haven't directly addressed what that solution looks like. And not that I want to spend a ton of time getting into the science of this because, you know, this is more of a podcast focused on marketing, but I do think it's important to at least touch on that briefly. So what does that solution look like for folks to that are experiencing numbness?

The technique, the surgical technique is called resensation. And what's involved in that is taking a process neuropallograph. So that's donated tissue, similar to if you're an organ and tissue donor on your license, you know, all of your major organs can be donated to other people. The same thing can happen with your nerves. And Axogen, the company that I work for, is focused on peripheral nerve repair, and they've developed a process to cleanse those nerve grafts, to remove any genetic material, but keep that important structure intact. And that's what's so important. So that nerve allograph really serves as like an extension cord between the nerves that are cut in your breast tissue. And so a plastic reconstructive surgeon is going to go in during the breast reconstruction surgery and surgically reconnect that nerve graft to the nerves in your chest.

And then over time, your nerve can regenerate through that nerve graft, potentially restoring the signals back to your brain so that you get the messages that you're feeling in your chest. And then the graft actually becomes part of the patient's own body. And there's no need to take any type of inhibitor drugs or anything like that. It's a really amazing technology, and it's been used all over the body for more than 20 years with great success.

So fascinating. Thank you. Thank you for sharing that. So you talked a little bit about, again, the audience and this sort of circle of. Of care providers that will surround a patient. You talked about the plastic surgeon. Really kind of the awareness is highest amongst that group because they are then the ones that are doing this reconstruction surgery and then the. The allograft surgery.

So I'm probably going to get the terms wrong here, but that would be their. Their job. So awareness is highest there. But this is a classic example, Emily, of health marketing, where there's so many different stakeholders that have different awareness levels. And then therefore, the messaging. Right. And the strategies that you need to deploy are going to look very different depending on who your target audience is. So as you guys look at your marketing program is do you sort of prioritize B2B over B2C or do you see them very equal to one another when you're, when you're looking at the, your overall marketing mix?

I think currently we're in a stage where it's all equal opportunity education. So we're trying to educate general consumers at the same time as we're trying to educate very focused surgical specialties. And we do try to focus on different parts of the message to those audiences and how we deliver it. Because this could be a very technical and complicated discussion with people. And if it's too much information at once or too hard to digest, I think people have a tendency to just tune it out because it's like, you know, one more thing with a lot of information. So we focus on telling stories, using patients, you know, either who have had the rensation surgery and they can talk about their experience and their recovery, and patients of all different types that have had different types of reconstructions, different age groups. I think it's really important to be broad there. But we also focus on working with some of our clinical partners to be able to help them share through their voice to their peer audiences.

So we're specifically working with breast surgical oncologists and those are the ones who are performing the mastectomy procedure. And even though they're not doing the sensation technique, you know, their contribution to that process is really important in terms of how they perform it. It's almost like making sure that the artist is going to have a nicest canvas as possible for the reconstruction. So we really try to teach them about the problem and make sure that they're aware of it and then educate them on some of the basic nerve anatomy in the breast and how to collaborate with plastic surgeon partners. And then on the other side, we're also working with some of the plastic surgeons to educate their peers, those who are on the forefront that have been doing this procedure for five years or 10 years, sometimes longer, sharing their experience in their community and helping to get more people to understand what that problem is.

You've been running an awareness campaign for a few years now. And can you talk about which activities you found to be most successful in achieving your objectives?

It's a combination of a lot of the PR work that we're doing to get education out to multiple different types of outlets and have different ways of telling the story, of bringing new voices in. And then we also do a lot of direct to patient type of education. So we Have a website called resensation.com and I mentioned the need to really try to simplify things for people. And so we've tried to make very simple animations so there's no scary surgeon photos on there and things like that to help people understand what, what happens during the mastectomy, what is the procedure like and how is that going to work and been building out content. We also partner with some advocacy groups like the Breasties, who are very vocal in the space. And you know, many of them are, you know, either recently undergoing these surgeries, some of them have had surgery in the past and they don't have feeling and they can really relate to this and they're very passionate about it. And not just sensation, but, you know, all of these advancements in breast cancer care and how to get the word out so that more people kind of facing these challenges in the future are going to have a better chance at a more complete recovery.

I'm glad you went there because I was going to go there as well. The breast cancer survivor community is very tight knit and very supportive of one another, which obviously represents a tremendous opportunity for you to link arms there and really help get the message out through that community. Can you tell us a little bit more? Do you have any tips for other folks in terms of leveraging patient advocates and how to do that? Well, because I know that, you know, it's definitely something we want to be sensitive of because these are definitely. It's not just like an influencer, right, where you're going to pay them to help get your marketing message out there. This is very personal for them and you certainly don't want to appear as a brand as though you are sort of, you know, taking advantage of their personal experience. So can you talk about sort of what, how you, how you view that in terms of getting that right when you're working with a patient advocate?

That is a great point because they should not be treated like influencers because they're not the same. They have the lived experience of going, you know, through their own procedures and really being able to articulate in their own words kind of what that means. At first, I have to be honest, I was a little bit nervous about it because, you know, it's sort of a scary thing to talk about. I was a little bit nervous that, you know, some of these survivors and previvers may be disappointed that they didn't have this procedure. It may not be as open to talking about it, but what we found was, you know, reaching out to them through these different Groups and just doing some of the basic education on what happens. For one, they're grateful for the education because they didn't know and they understood it. And then they feel more empowered to help educate their peers and try to put this forward. And I think it's also a balance of knowing when you know it matters to use your brand and when it doesn't.

And I feel moody's probably about not needing to always have the re sensation brand front and center. In some situations, it makes sense. Or when we're directing people to our surgeon locators so that they can try to find a surgeon in their area and schedule a consultation, but really just try to focus on what the issue is so that then we're able to position a solution even. And I feel like there's a lot more openness to that. And the community at large seems very, very willing to try to pay it forward for future generations. I mean, I talk to people all of the time. Half the time when I'm traveling, I run into somebody that asks me what I do on a plane or something like that. They're very open about their procedure and that they're willing to answer questions that I have from them about how does this impact them, what does it feel like? And actually, all of that has helped us create better educational tools to reach more people.

So I think it's just been a really organic kind of partnership working with these survivors and previvers.

Yeah. So one of the tips that I'm That I'm hearing from you there is that it's really important to focus on the issue and let their voice come through versus it being the brand. And I think some. Some companies and some brands struggle with, you know, when does the brand need to lead? Because, you know, I'm doing this to. To raise awareness for my brand. You know, why would I want my brand to take the backseat versus the issue? And I think it's really smart. What you all are recognizing here is that there's a tremendous amount of potential and willingness and interest to get the word out or raise education and awareness with inside of this survivor community. But it does require prioritizing the issue and letting the brand sort of take the backseat.

Completely agree. If it was all about us and you don't take the opportunity to help educate about the issue. You know, it's sort of like you're trying to put a puzzle piece in where it doesn't really fit. You can't just go out there and talk about a solution when people don't, you know, Understand and accept that there's a problem out there first.

Creating a health movement certainly doesn't happen overnight. Do you view this as a long term journey that you're on as a brand and as a company?

100%. I will say sometimes it's a bit of a challenge, you know, with executive leadership and helping them understand how the PR media strategy really fits into the overall commercial plan. Because it isn't just a short term thing. It's not like you can just get a few placements here and there and pat yourself on the back and say, great, the word is out, we're done. So I've really looked at it kind of year over year. How do we build momentum, how do we tell deeper stories, how do we, you know, collaborate together with, with you and your team to come up with new ideas, fresh angles, bringing new voices, you know, because people are diagnosed every day. Right. So even all the great PR that we've done in the past couple of years, people don't necessarily go back in time and like look for an article, you know, from a couple of years ago.

So I feel like it is something that you need to invest in regularly if it is going to be part of your strategy. It's not really a dabble approach or like putting out a press release occasionally on the wire.

Yeah, two questions on, on that. I'm going to come back to the executive piece in a moment. But you know, so many companies, I think, you know, want everyone to know about this really important thing related to their health and they, you know, they come to us and say, let's get the story on Good Morning America. And, and some people think that once you've gotten that sort of big national story, which, which obviously helps, does it tremendous amount to really help raise awareness in a big way. But it's almost as if then they think the work is done, that you've made it. What do you, what do you think about that? I mean, it sounds like you think this is about building momentum and continually beating that drum.

You know, a placement on the Today show or Good Morning America is great. I sort of equate that to like an EpiPen. It's like it gives you a great adrenaline boost, but maybe you're going to get 20 minutes life out of it. And so you have to think about what's the rest of your plan, you know, whatever your maintenance plan is. Even if you're thinking out of the realm of your life, what's the actual diet, what are the things that you're doing consistently, You Know, that seems to be a theme across all types of things, is that consistency is sometimes the most important. It's not that everything needs to be as big of a hit as like the Today show. Right. But continuously being out there, being front and center, I think is so much more important.

It helps you build momentum. And we've seen that also translate into search engine optimization on our website and things like that. So it all kind of works together. It's like an ecosystem as opposed to just chasing those sort of quick highs, which to your point, are great, but, you know, sometimes they're few and far between and there's so much happening in the media all the time, it can be hard to, to even fight for those opportunities really regularly.

Yeah. So I was going to go, I was going to ask you what evidence you've seen that the movement, this health movement and awareness around numbness is growing again. You know, executive teams want that evidence that this work is paying off, that the money investment you're making in raising awareness is paying off. Can you talk a little bit more about the evidence that you're seeing? And obviously the, it sounds like the sort of layered approach to increasing awareness has helped boost your, your results in search for folks out there who might be looking for solutions. What else are you seeing?

I can also tell just in how many more procedures are happening. So I think those are all really good indicators that it's working. We're also seeing some other things that are a little bit more anecdotal. But, you know, surgeons that I may have met, you know, four years ago that didn't really believe this was an issue. Those surgeons are now coming to us asking to be trained on the procedure because patients are asking about it. And if they don't offer, those patients are looking for someone else who will. So I think that's, you know, probably some of the most compelling evidence that you can have. Even though sometimes it's a little bit harder to quantify we really are seeing success continuing to work the plan as well.

Yeah, yeah. So these metrics that you're mentioning, you know, both, you know, more specific qualitative metrics, but also the anecdotal ones, I'm sorry, quantitative metrics, but then the anecdotal ones as well, are those resonating with the executive team? Are they, do they look at that, you know, right alongside you and the marketing team and say, yes, this is a success. This is what we want to see?

They do. And I think I've made a direct habit of when we share our PR wins. Right. You know, all the impressions and things like that and then sharing what's actually happening kind of simultaneously is really important because they don't necessarily know what it means to say that, you know, in five years we had more than 650 million impressions. They're like, I don't know what that is. Right. And that's not their world. That's okay.

So I tried to make it more real for them and be able to translate that into, you know, how many opportunities people have had now with all of this work to learn and many times be, you know, touched by the information more than once and then how that's translating into what's important to us. And we can tell people are actually searching resensation by name, which I think is great. A couple years ago there wasn't any searching going on at all for anything with like chest numbness or breast neritization or anything like that.

That's really cool. It sounds like you're, you're really do a thoughtful job of, of bringing your marketing metrics alongside of business impact, business performance and that it is, it is resonating. I think that sometimes, you know, executives might agree with you that they want the long term investment. We were talking earlier about is this a long game, is this a journey? And it is a long term investment. They might agree to that when you're talking about the annual goals for the program. But you know, there's certainly that pressure to demonstrate kind of immediate impact on business growth, whether it's monthly or quarterly. So how do you keep the executive team honest and allow the organization to stay focused on the long term goals when there's also this pressure for short term performance as well?

It was more challenging, you know, earlier on and I think in those earlier days we had to really do a bit more modeling and being able to show them kind of scenarios of how this work is translating into increased patient volumes. We also work to communicate this even with the surgeons that we work with so that their understanding of how much more traffic is actually coming to them that they didn't even realize, like coming from the locator. So I think trying to come up with some sort of model or different assumptions that you can use to be able to connect, you know, this investment in PR and the type of results that we're getting really are kind of helping to feed the pipeline, if you will, in terms of consumer information.

Well, I just have to say, what you guys are doing is so cool, and it sounds like it really is making an impact on raising awareness amongst consumers, and then, as you said, increasing patient referrals for your clinicians as well. And the executives are definitely seeing the impact as well. So kudos to you and your team for all this work that you're doing on an ongoing basis. Now, I'd like to. I'd like to shift a little bit to a special segment that we call the Collective Quick Fire. It's a fun way to get some valuable nuggets of insight from you before we end the episode. My first question. I got five questions.

My first question for you, Emily, is what topic do you think is overhyped in health marketing?

Oh, that's a good one. It's gonna kill me to say it, but, I mean, to me, just in general, it's the social media, and maybe it's just because the business that I'm. That I'm in, that's sort of a little bit less. But all of the TikTok, Maybe it's just not my generation yet, or maybe it's being in a really regulated type of market and we just don't have the flexibility to do that. Maybe I'm just a little jealous of the others that get to do all these fun, creative things, and for us, we're not able to do it.

Yeah, yeah. So just context for folks. We're obviously in a highly regulated environment here, and so there can be challenges that brands face in terms of how they approach social media. Next question. What do you outsource versus what do you keep in house?

We do outsource our PR and media, of course, and then also some of the creative work with the agency that we do. I feel like our brand aesthetic, you know, has a really good feel. It's really strong. And so when. When I wanted to create new tools or resources, I want to call on them because I'm really looking for continuity in that brand. And to me, it's worth it to do that.

Leads or awareness, which one reigns supreme for you?

It's awareness for me because I think that's what you have to really focus on before you can just start counting like lead generation.

And this one I, we've already touched on, but I, I'm going to ask it anyway. Short term results or long term investment?

For me, it's all a long game. I don't do anything for short term, but I, I also feel like, you know, trying to change a standard of care in healthcare or any space, you have to be willing to play the long game. It's, it's so rare. Just when you think of, you know, the speed that everything moves, social media and those things move fast. But when it comes to legislative change and, you know, however many people it takes to really create a movement, it's all about that longing. Gotta, gotta buy into it.

Last question. What's the best podcast episode or book on either leadership or marketing that you've consumed recently? I know you do a lot of.

Traveling so, you know, I'm always a fan of the Gallup podcasts. It's near to my heart. I feel like they, you know, have great research, fact information and they have great leadership and coaching, webinars, podcasts and you can definitely find me tuning into those, trying to always get some new nuggets of information.

Yeah, that's a great one. Well, thank you so much Emily for, for joining me today. I really appreciate it. Where can listeners go for more information about the Resensation program? I know you mentioned the URL earlier, but if you could repeat that again, that would be great.

Of course you can find more information@resensation.com we have lots of educational animations, tons of information to make it easy to understand via a search and locator. If you're in a position where you might need to find somebody near you or know somebody else that may need to find somebody.

Awesome. So many great insights today. If you all are feeling inspired, please do us a favor and subscribe wherever you get your podcasts. Thanks for being part of the Health Marketing Collective where strong leadership meets marketing excellence. Because the future of healthcare depends on it. We'll see you next day.