Rethink Patient Journeys for Healthier Marketing Outcomes

Kirsten Carroll [00:00:10] it’s nice to meet you all. I’m Kirsten Carroll. I’m the CEO of Kandu Health. I’ve been working in–ooh see if I can fix that feedback for you. Okay. I’ve been working in stroke care for about 25 years. A little bit of context and some of the point of view that I want to share today. I’m joined by our VP of marketing, Jennifer Glynn. And, and Elizabeth here, who’s going to share her own perspective and her own lived experience. As a CEO of this company, one of the very first things I did is write our mission and our beliefs. There was an article in the inaugural Journal of Brand Strategy that that said something I love to which is, ‘your brand is the sum of the promises kept divided by the promises made over time.’ And so it was incredibly important to me, as Jennifer translated our mission and beliefs, that she understood the role that branding played and actually delivering on these promises and making sure everybody in the organization incorporated them and understood what it meant to be part of this company. So Jen is going to share that. And thank you for being on stage, Jen. She is normally behind the scenes putting together all our messaging. But I wanted her on stage actually talking about how she did this. So I’m going to see if I can get this slide. Okay, good. So the so in founding Kandu [00:01:40]there are so many assumptions, and Elizabeth is going to talk about this, about what it means to be a stroke survivor, what it means to engage with this community, and if there’s a message here today It’s that [13.3s] [00:01:54]when you are working in health care and you are working with patients, there’s such an obligation to understand their lived experience and understand their journey [10.9s] so deeply. And I’ll say you, [00:02:07]I spent the first 17 years of my career in neuro interventional devices for stroke, thrombectomy procedures, aneurysm procedures. I thought I was an expert in stroke. And then I transitioned from medical devices into health care services and realized that I had spent 17 years understanding the blood vessels and the disease processes. And I absolutely did not understand living with the disease. [24.0s] And so I’m going to tell you, you absolutely have to understand that. And that is also an impossible task. I was saying to the team earlier, there are languages where there’s like a dozen different words for love. We probably need a dozen different words for understanding. Because the only people who truly understand this are the people living with the condition. And if you don’t have them in the room with you, and you don’t believe them, you are never going to get it right. So let’s talk a little bit about why Kandu health is here. This first statistic is the devastating statistic that our mission is centered around. This came out of a trial called the Abbott study. They looked at the post-acute experience and stroke. And [00:03:19]a year after stroke, 28% of stroke survivors rated their quality of life as poor or worse than death. The average life expectancy after stroke is over ten years. That is an incredibly long time to live with terrible quality of life. But the beautiful thing is, none of it has to be this way. It is, incredibly possible to change this statistic. And that’s what we’re here for. [25.9s] We’re here to improve the quality of life of people affected by stroke. There needs to be an economic logic for that in our health care system. We spent a lot of time going very deep into claims data, and I think there’s a problem in naming it acute stroke, because people treat it and research it like an acute disease. The reality is this the single most expensive disease diagnosis that a Medicare enrollee can have. The average stroke patient uses $38,000 of health care after they leave the hospital. And it’s largely driven by readmissions. And those readmissions are not actually largely driven by recurrent stroke. As much as we talk about blood pressure management and dual antiplatelet therapies. The number one cause of readmissions after stroke is infections and sepsis. I’ll tell you, in 20 years of going to stroke conferences, I have never seen a podium presentation on infections and sepsis post stroke. And a lot of this is because industry drives the narrative, and there is not a lot of industry focus around good hygiene and generic antibiotics, but it’s actually the number one problem for these patients. So when we started Kandu, we did something a little bit different in that before we. Hired clinicians to work with us. [00:05:00]We built an advisory board of stroke survivors. These survivors actually have equity in the company. They don’t just do focus groups with us. They are involved in our product design, our writing, our consent policies. They interview our clinicians. They are incredibly honest, and they are an incredibly diverse group. And they have a seat at the table not just to be heard, but to be believed and to actually tell us what to do. [22.0s] We’ve developed a tech enabled health care service. It’s fully remote, multidisciplinary care for stroke survivors. And when I say multidisciplinary, we have occupational therapy, licensed clinical social worker, dietary neuropsychology, medical nutrition. And you need all of this. 10% of the stroke survivors we work with have suicidal ideation. They’re trying to manage an incredibly complicated, disability framework, insurance framework, social determinants of health. And most of what people want to talk to them about is managing their blood pressure. So we try to be there for everything else that they need. I will try to get the slide to advance. There we go. So our mission is to improve quality of life for people affected by stroke. And we have these four core beliefs. And I expect everybody in the company to know these and to manifest these, decisions that they make every day. So the first is that every stroke survivor deserves support. It is our responsibility as a company to figure out how to get people access. In stroke, that’s not just economic access. It’s cultural accessibility, but it is also understanding the impairments. And when I say impairments, there is a very diverse population. And not all stroke survivors have all these things, but some people have attention deficit. Some people can’t see their left visual field, some people can’t use their right arm. Some people can’t interpolate data. You need to design assuming all those things exist and not making them edge cases. Agency improves outcomes. Everything that we do is grounded in self-determination theory. [00:06:58]The single most, effective behavioral health intervention in stroke is actually restoring people’s agency and identity [6.9s] through smart objectives out the window. Restore people’s agency and identity. And you cut in half dependent disability a year after stroke. [00:07:15]Often we try to improve health in order to improve quality of life. We see it actually the opposite way improve people’s quality of life, and you will actually see their health improve. [9.4s] So it was very intentional that we are focused on quality of life instead of health and our mission. And finally, community support matters. There’s enormous stigma and stroke. There’s enormous isolation and stroke. And so building communities of people who do have your shared lived experience and do understand is incredibly important. So with that, I know, and I apologize, that probably took me more than my allocated minutes. Jen and I have worked together for over a decade of these 25 years. And so I had these very strong point of views. Jen is much better than I am at turning it into a standardized style guide and executable, consistent brand. So this I’m just going to ask Jen a few questions and, you know, please follow up with her, on a lot of the how to’s. But, Jen, just when we talk about point of care marketing and in this case, it’s, it’s a, you know, a sudden onset chronic condition, a traumatizing, exhausting event. How do you take all of these beliefs and all of these ideas about how we work and actually incorporate it into the way we message to stroke survivors?

Jennifer Glynn [00:08:37] Right. So as you heard stroke is complex. It’s quickly onset. And, oftentimes, patients are–this is what we hear from patients–they’re confused, they’re overwhelmed and they’re in shock. And so in the acute point of care, we focus on agency, helping people understand what happened to them and helping people understand what to expect in the coming days in the acute environment. There’s so many things happening. It’s chaotic as you’re going through discharge. And so taking all of the things that Kirsten just said, [00:09:19]we have heard feedback that really what they want to understand is what’s next right in front of them. So when we are introducing our program to patients in the acute setting, we don’t really talk about ourselves. We talk about what they can expect to happen next, and we do it in a transparent, honest and simple way. Because really, what we hear from patients all the time is all of this noise around me is very confusing. What is going to happen tomorrow? And so we focus on what’s going to happen tomorrow. And I think that that often people don’t comply with their discharge instructions or the things that their doctors want them to do because of things that are outside of their control. [49.1s] So that could be needs, social determinants of health needs, that is lack of insurance. Oftentimes patients have lack of transportation. They are confused with all the instructions that they’ve been given and they’re exhausted. And so we tackle those things in messaging right up front about all the things that they can expect.

Kirsten Carroll [00:10:32] Yeah. I think, total honesty. Yep. And being an active voice very directly.

Kirsten Carroll [00:10:38] Right. Is really important. And so there’s this concept of meeting the patient where they’re at. And where they’re at in this subacute, post-acute stroke stage is a pretty wild place. And so how does that and what does it mean to meet a patient where they’re at in an ICU or on a stroke floor in a hospital?

Jennifer Glynn [00:11:03] So we know from our research and patient interviews and from clinical paperwork that when a patient is in the ICU, nurses are required to do a neuro check every hour. So imagine that you just had a brain injury and someone’s waking you up every hour on the hour to make sure that you’re okay. You’re delirious, you’re exhausted, you’re tired, you’re confused. And then someone’s trying to explain to you all the things that you need to do once you leave the hospital. I know you’re going to speak to that when we chat. And so really, what we try to focus on is [00:11:39]simple and succinct messaging. [1.2s] And we also understand, based on our research, that we introduce our program in the acute setting and then also we do a follow up call two weeks later. Because what we have found is that [00:11:52]when patients get home and reality sets in and they understand more in totality and what they’re dealing with, that they’re more open and receptive to talking to someone like us, to getting support. So, in our main sort of take home material that we send home with stroke patients, it’s one sheet of paper and it’s one line about Kandu. The rest of it is how to manage post-stroke fatigue, because 85% of our patients have post-op fatigue when they leave the hospital. [29.3s] And I think you’ll speak to this. It’s not even something that you knew about when you were discharged from the hospital. So [00:12:27]we try to add value immediately before we talk about ourselves. [3.4s] Yeah, that’s a big takeaway.

Kirsten Carroll [00:12:33] [00:12:33]We hear again and again from people they remember nothing that happened. They remember nothing they were told. [5.7s] And so, you know, when we talk about improving quality of life for stroke, for people affected by stroke, that also includes the clinicians caring for the disease. And when we talk about impossible asks the number of standards, the amount of I think value based care is so well-intentioned and absolutely patients deserve this continuum of care and a focus on their outcomes. But the amount of pressure we’re putting on acute stroke teams to fix it all in a six day hospital stay, make sure that people understand their medications, follow their discharge plans, don’t have another stroke, while they are also dealing with incredibly acute emergencies. Is wild and we hold them responsible for readmission rates. They actually have no visibility to and don’t understand. We hold them responsible for follow up visits, when frankly, the insurance won’t cover a lot of these things. And the doctor that a 20% of our patients don’t have a primary care relationship to get the referral to the neurology visit, they’ve been told they have to go to. So physicians are overwhelmed. I had a long dinner last night with a physician, explaining to me that all the things we do are necessary and none of them are what he’s paid for, and he’s paid to do 15 bucks checks during his evaluations and dictate really well. So they code the visit properly, and he has no time for the actual clinical care. So maybe talk a little bit when we message to physicians how we can step in and help this in, in in them in this environment where we’re putting the entire burden of stroke outcomes on this acute stroke team in the hospital.

Jennifer Glynn [00:14:17] Right. So in terms of where we talk often about meeting the patient where they’re at, we also talk about meeting the clinician where they’re at. They’re burdened with all the things that person just said. And they’re also have focus is that that every provider is focused on. They’re focused on readmissions outcomes, patient length of stay. And so we try to address those in our messaging to our clinicians. So we talk about all the things that we do within our program that support those things that are important to their hospital. In addition to that, clinicians are always interested in the clinical outcomes and what we are doing to improve those. So we have over 600 individual pieces of educational content that we have written with clinicians and stroke survivors to deliver us through our tech enabled app. Our navigators to pair one on one with a stroke. Survivors or a program have the ability to curate that content, meaning as they’re talking to the stroke survivor and hearing what their needs are, they can decide what they get in the app, which means our stroke survivors are getting bite size, curated, timely content that meets them exactly where they’re at. When we explain that to physicians, you can see the light bulb go off for them. They understand that we’re really trying to serve their patients exactly what they need. The other thing that we communicate to them is we really build the recovery plan based on their discharge instructions. So [00:15:50]we are starting with their clinical foundation as the point in which we then build the program for their survivor. I think that when we aggregate all of our data, we then report that back to the hospital. Not only are we saying that we’re taking your discharge paperwork, but then also here all the results that your patients are seeing based on the instructions that you provided. So we try to bring it full circle in terms of not only meeting the patient where they’re at, but also supporting clinicians in those two ways. [31.3s]

Kirsten Carroll [00:16:22] Right. And when–I think there’s a lot of pharmaceutical representation in the room–the hospital do their best to educate patients about the dual antiplatelet anticoagulants, the blood pressure medications, all of that, the patients don’t remember any of it. They never understand, when we talk to them, the disease process, why their stroke happened. Many of them don’t actually understand what the stroke was. They certainly don’t understand why they have the prescriptions, and they really don’t know what to do if they’re on Eliquis and they start having a bleeding hemorrhoid. Nobody actually tells them, what do you do if you get a bloody nose? And they panic and they stop taking the medication? So being there as they return home at that immediate moment when they have a question is so important. I want to hand it off to you to talk about because Elizabeth can tell us better than anybody from her perspective. You know, you can never ask anybody to have all the answers for everyone. But but, Jen, why don’t you introduce Elizabeth and. Yeah.

Jennifer Glynn [00:17:16] Thank you for being here.

Elizabeth Harness Richardson [00:17:17] You’re welcome. Thank you for inviting me.

Jennifer Glynn [00:17:19] This is Elizabeth’s harness. Richardson. She is a, a stroke survivor. She had a stroke in November of 2019. And, as a healthy 44 year old woman with no history, family history of stroke, and no typical risk factors that are common for our patients. Like many survivors, she has effects from her stroke that she manages on a daily basis that go mostly undetected by people that you encounter. Since her stroke, she’s become an advocate for stroke awareness, understanding stigma surrounding stroke recovery and improving stroke aftercare for better outcomes. Like us, she’s a communications professional. She spent many years working in pharmaceutical, biotech and medical device companies. She currently is the principal of Mog and Springer Communications. And thank you for being here.

Elizabeth Harness Richardson [00:18:11] Thank you very much for inviting me here.

Jennifer Glynn [00:18:14] So, I am very excited to have this conversation with you right now because I think, like Kirsten was mentioning, we can never really understand what it’s like to go through having a stroke. So, just like, what were some of the challenges that you faced as a patient, like in the hospital? And then once you were sort of discharged from the hospital?

Elizabeth Harness Richardson [00:18:37] No. Absolutely, absolutely. I mean, I mean, some of you might have seen me walking around. I don’t think anyone who looked at me and said, well, she had a stroke, right? She was she’s a stroke survivor. No. And I think that’s important. And I want you to look at me and see that when I explain the next part of this question. Because, [00:18:54]remember, not all scars are visible, right? I always kind of refer to my adventure in the hospital after I’d had my stroke as, a journey of assumptions. My entire care journey was dictated by the assumptions that were made about me [19.1s] on the surface, how I look, my age. No one, from the moment that I entered the emergency room with my husband, could believe that I would be possibly having a stroke. They didn’t even think that I was having a TIA. So that was the surface assumption. The next assumption that was made was how I was presenting. So to myself and to my husband I wasn’t right. There was nothing about my speech pattern which made sense to me. My cadence was off. I was very numb in the face. And while I have a nice, good full face, definitely I had a drooping, but it wasn’t, as you know, detectable as you might see. It wasn’t completely, but I was definitely numb. Couldn’t fill half of my mouth. Couldn’t feel my right arm and I had a slight limp. And the third thing that was the assumption was the moment that they found out my husband is a trained physician, a UK trained physician and he has worked in the pharmaceutical industry for decades, and I also have worked in pharma and med device for a very long time, the moment that they found out what our background was, it was as if to say when you when you talked about Kirsten and when you talked about Jenn the idea that they have so much on their plate, it was almost as if they said, ‘oh, well, ‘You guys already know what you’re doing here. You’ll be able to handle this on your own. So we’re going to gloss over. We’re not going to worry about this. You’ll get home. You’ll figure it out.’ We literally were told that by multiple people. So that’s how our care journey went. So number one, I wasn’t given, TPA or any kind of clot, any nothing. I wasn’t they did not find out that I had a stroke until the very next morning when that showed up on the MRI. And when we were in the emergency room being evaluated before I actually got to the emergency room doctor, we had a nurse who literally said, ‘well, she looks fine to me. I think she can go home. I think you might just be having a stressful moment.’ So that’s how it was affected. Definitely.

Jennifer Glynn [00:21:28] You mentioned your husband. Yes. And I think we often in healthcare, we sometimes forget the care partner. Yes. And we at Kandu [00:21:39]we say care partner and not caregiver because we believe so much in agency that we do feel it’s a partnership, and we want the patient to feel empowered to take control of their health care, recovery and journey. [13.5s] So can you talk about your husband’s role in the acute setting and then also when you go home?

Elizabeth Harness Richardson [00:21:58] Absolutely, absolutely. So he is the entire reason that I actually was able to stay in the hospital. And I was actually able to be diagnosed because if he hadn’t intervened with the nurse, then I just talked to you about who said, ‘oh, she’s fine, she can go home.’ If that intervention hadn’t happened, I would have had at home. So what he did is he just stopped her and he said no. And he’s not that kind of a person. That sounds typical personality. But he was you know, he was playing the role of a spouse right at that point. Loved one. He said,  ‘No, she’s not right. This is not her normal. And she’s she’s normally quite high functioning. This is not right at all. I don’t think…’ And I think it was something of a combination of the accent and the tone that he was using. But I think he kind of put the fear of something into her a little bit. And so they immediately exited me down into the into the emergency room with the doctor and all of that. So that was really critical because if that hadn’t happened, I would have been heading home. Once we got home, they handed us a packet and we were sorting through everything together. And thankfully he was looking up stuff and clinical studies and all of that sort of thing. But again, as a caregiver, yes. Is you do we have an unusual background that makes us uniquely able to have handled the situation? Yes. Are we human? Yes we are. And the fact is he was very human and he wasn’t thinking straight that day at all. So outside of that intervention, he was as discombobulated as I was. I tell the story about the fact that, you know, he had to go pick up my car. He had an Uber driver taken back to the house twice to find his keys, only to find out those keys were in his pocket the entire time.

Jennifer Glynn [00:23:40]  It’s stressful

Elizabeth Harness Richardson [00:23:41] So it’s very, very stressful. So everyone’s human. Everyone’s human.

Jennifer Glynn [00:23:45] I want to go back because you have told us a really great story about some medications that you were prescribed. And can you just talk about sort of that experience of getting that prescription and what you were told?

Elizabeth Harness Richardson [00:23:57] So [00:23:58]I wasn’t told anything about the prescriptions. I was just told this is the stroke care paradigm and this is the gold standard. So you’re going to go on a 40mg statin. Keep in mind I had low cholesterol. I’d never been on a statin in my life. Nonsmoker. Healthy. The whole thing. Okay. I have to take baby aspirin every day. Okay. That’s fine. What I didn’t know is that taking that high dose of statin was going to leave me with incredible physical effects that I just wasn’t used to. So after a week of taking this statin, I was crawling up my stairs. Because my legs were so heavy and they were in so much pain [40.4s] and I was having such just… every muscle in my body ached horribly suddenly, and I wasn’t used to it. And I kept thinking, is this a stroke? Is is me? Am I going crazy? What’s going on here? And that was coupled with what I only learned after speaking with Jen and with Kirstin, which is post-stroke fatigue. And I had it. And it’s a real condition. And I still live with it today. But, no one told me that that was a side effect. And it was, again, to the point where my husband was looking up things and he said, ‘oh, no, I think that’s that is one of the side effects. Yep. That’s a side effect.’ And the good thing is it went away, but it took about three weeks for it to dissipate. So three weeks of your life of just not being able to… I’m a rather energetic person by nature. And so if you can’t just do the normal things you want to do that’s difficult. And no one told me about it. And when I did go back to aftercare and I said, ‘hey, you know, I’m having these issues.’ The only response was, ‘well, yeah, that can be one of the side effects.’ It was very nonchalant because, again, that perception and that assumption, well, she survived it. She looks okay. She’s not really you know, she’s getting through all of this. You’re fine.

Jennifer Glynn [00:25:55] [00:25:55]It’s a common feedback that we hear often about people who are prescribed something, who aren’t really given the full picture of what that will look like and what to expect. [9.7s]

Kirsten Carroll [00:26:06] Right. And [00:26:07]there’s so much we ask of our patients. [1.9s] And you know, we’re speaking about stroke. And stroke is so common. I think you should all know about it. But there’s I think you each need to understand the patients for whatever disease or condition it is that you’re managing. Post stroke fatigue is not just traumatizing and confusing. And, there’s this very American thing of just powering through things and setting smart objectives. And as my one of my favorite stroke clinicians, Harry McNaughton, said to me very sternly, you Americans need to take your specific, measurable, actionable, you know, oriented, reasonable or time bound objectives and throw it out the window. Stroke has no time frame on it. It fluctuates day to day. [00:26:55]Many of these patients might have three, four good hours in a day. And when we talk about agency and we talk about the extent to which we want them to go to these eight different specialist, outpatient visits, do outpatient rehab three days a week, take all of these medications, take our phone calls, do these follow up reports. Those are our priorities. Nobody ever sits down and asks them ‘What matters to you? What is it you need to do in your life right now?’ [27.6s]

Elizabeth Harness Richardson [00:27:23] And you know, they also don’t talk about what are the potential things that can happen after a stroke. Not just six months out or a year out. What happens a couple of years out? Three years out? In my case, my biggest side effect from the stroke outside of, sometimes I’ll get a bit of a loss for words or I have to, I still sleep more than I ever used to. But I have migraines. I have trigeminal neurologic migraines, which means that when I get a migraine this side of my face, not the right side where it was affected first, this side actually goes numb and I get puffiness in the eyes. So I’m on two different migraine medications, one I take daily. And then two, I take every other day. And you know, even to go through that with doctors, I had to go trial and error through so many migraines medications before they gave me the ones that really, really worked and that insurance would code for and all of that. So and it’s, it’s two of the newer ones that are out there. But it’s a real thing. Who knew I never knew. I’ve never had had migraines.

Kirsten Carroll [00:28:28] [00:28:28]I think we have these urgent priorities of what we want from our patients. And sometimes you need to go slow, to go fast. You need to take [7.3s] [00:28:36]the time to understand their priorities. [1.9s] [00:28:40]And very often they will get to a point: I want to make that health behavior change; I want to prevent that next stroke; I want to take this medication; I understand the side effects and I’m ready for them. [10.6s] [00:28:52]But you have to slow down when we say meet people where they are. [3.0s]

Jennifer Glynn [00:28:56] I mean, often when we’ve heard from patients, [00:28:58]when our clinician is explaining to them that they need to go pick up these prescriptions, they start tuning out because they start to worry about how are they going to get, either physically get to pick up the prescription, or they’re in their mind thinking, I don’t even have insurance to cover that prescription. And I’m too embarrassed to tell my clinician that I don’t have insurance, so therefore I just don’t fill my prescription. [22.2s] We hear this often.

Kirsten Carroll [00:29:23] And why are you giving me homework instead of the right help? We give patients an enormous amount of homework.

Jennifer Glynn [00:29:29]  So is there any last thing you want to say to fellow communicators about how to speak to patients?

Elizabeth Harness Richardson [00:29:37] I do, I do. So everybody here is in marketing and communications. You’re all across different health care spectrums, different disease and therapeutic points. And I think we’ve talked about stroke here, but I think it can be applied across health care, which is [00:29:52]when you talk about meeting the patient where they’re at. For me, communication is all about honesty. I think oftentimes when we want to create these storylines that we’re coming up with for our therapeutics, our solutions, our products, we want to make it as positive as possible. And I would challenge you to say that honesty is the best route because any patient wants honesty because it gives them clarity and it also gives them hope. If you empower a patient with that kind of honesty they’re going to take their their their journey through. And that becomes a positive thing all the way through. So that’s why point of care is so important because it’s where the patient is with that educated intermediary who is their provider. So putting honesty and empowering them with that education right there I think is invaluable. [48.3s]

Jennifer Glynn [00:30:42] Well said.

Kirsten Carroll [00:30:43] I’m going to just sort of close with what I opened with. The number of times you see companies make terrible communication decisions and you say, if there had been one person in the room from that community, this would not have happened. Don’t assume that you understand it. Have the community and the room have the community making decisions with you. It makes all the difference in the world. And if you are dealing with communities with chronic disability, and this is just a policy pitch of anybody in the room can influence this. It’s important to us to pay the people who are bringing us the lived experience, the number who have asked us not to pay them because they are on SSDI and they get their insurance from Medicare through SSDI, and if we pay them, they will lose not just their disability benefits but their insurance. There are no loopholes for patients to actually be paid to consult with the company, serving them where they don’t put their SSDI at risk, which is incredibly frustrating. We found creative solutions, involve the community, pay people for their lived experience, believe what they tell you and do what they tell you. But recognize none of the systems are set up to make this easy. And so it’s going to take commitment and work.

Jennifer Glynn [00:31:54] Thank you, thank you. Thank you.