Knowledge and Narrative in Learning About Your Health

Video Transcript

Tracey Welson-Rossman: Okay, we're ready.

Joyce Griggs: Hello everyone. We're live and thank you so much for being here with us tonight. We're here with my partner, as always, Tracey and also our guest tonight, Sharon Cammisa. And we're talking about how we can be better about understanding our health through Mediflix whose transforming health communication with their platform, and which kind of brings together health care education and entertainment in one wrapper. And so, as you know, we've been talking with you every month about how we can bring to patients more opportunity, right? All of us, the people, the people of healthcare, more opportunities to be engaged with really credible information that allows us to ask better questions and really think about our health, and our health care, and the health care of our family in new ways. So, Sharon is the chief commercial officer at Mediflix and we're so glad that you're here with us tonight.

Sharon Cammisa: Thanks Joyce. I'm really happy to be here. Thanks for having me.

Tracey: I should point out that we are in all different time zones here.

Joyce: Oh sorry, it is evening where I am and afternoon where you are. So I do apologize.

Tracey: Although it's gloomy on the east coast, so it does seem a little evening. Sharon, I was really intrigued when I was introduced to Mediflix. I'm a huge entertainment fan. I was like, how can you actually make healthcare information more understandable? So can you, you know, give us an idea of what Mediflix's purpose is and, you know, how you're going about to do this?

Sharon: Sure. Thanks for asking. So you know it's not an easy feat, of course, as we all know, but it's all about storytelling. It's all about really just getting to the heart of telling stories of real people, telling stories of doctors helping people really understand from point A to point B what people are going through. It's a sense of community, it's understanding you're not alone, that you're not isolated from the information you need to know. So what we try to do at Mediflix is we take our entertainment background. So our founders all come from the entertainment industry. They come from places like HBO, NBC, they come from the music world, they come from HSN. And we couple them with a group, a cadre of experts. So we have over 300 expert physicians and we bring them together and we're trying to bring the voice back to the physician to help us tell stories and then we bring patient stories together as well. So our hope, at the end of the day that anyone who's a patient, a family member, or a caregiver can really come to Mediflix and start to understand all the different things that go on, how to diagnose, what people went through, and so on.

Tracey: So, you know, just a follow-up question about why being health literate is so important for all of us?

Sharon: Yeah. So, you know, knowledge is power. I think we all can agree to that and at the end of the day, you know, we go to our doctor, our doctor tells us what to do, we do it. And that works if you're in the right place, if you have the right physician, or if you have the right specialist. Sometimes that's not even the case. Or if you remember to tell them everything. I don't know about you, but, you know, sometimes, like, when I take my car in, I tell them, I've been hearing a noise for like two weeks. And I get there, and there's no noise. It's the same thing when we go to the doctor. We maybe have a pain or something happened, and we forget to mention it, because we think that this person there should be able to read us. So, what we try to do is really get people to understand who they are from the whole person, their whole health, empower them to really be that advocate for themselves. And if they can be that advocate for themselves, they can give the right information to their physician and then they can actually then, hopefully, get more information and get better outcome from that.

Joyce: I really love what you're saying, you know, about this, you know, health literacy being us getting, I don't know, maybe even a little excited, right?, about being engaged in our healthcare, even routine healthcare, you know, for that matter when we always often talk about serious conditions. But what do you think the state of healthcare communications is? I mean since you guys have really like taken this on in a big way.

Sharon: Well, you know, it's interesting. We look around and we do healthcare landscapes all the time. And what do we find? So much innovation. I mean, so many fabulous things going on right now. Everybody is trying to solve for everything, but at the end of the day we haven't really allowed healthcare communications to keep pace. So the average person doesn't know what's out there and they don't understand what's out there and even if they have a great app or they have a great site that they like to go to, very often it's a sliver of what they really need to know. So our goal is not to substitute for that. Our goal is to amplify it. Our goal is to really bring together the best of what's out there and then use the storytelling to draw people in. So they can relate to these different patients and then they can explore what works for them. You know, is it an app? Is it a website? Is it a person? Is it a support group? But everybody should be engaged in their own health and they should see themselves as the captain of their own health.

Joyce: Yeah. I think that's really important.

Tracey: It’s yeah. I used to call myself my GC. My own General Contractor.

Joyce: Yeah, yeah.

Tracey: So healthcare there's so much to talk about. What's your approach in terms of the content you're selecting. And, you know, what what type of stories that you're trying to tell?

Sharon: So I wish I could say that we just go and we say we want to do a program on X and we do it. It's not really the case. So we need to have funding. So we actually work with industry to do what we call edutainment. So that's our edutainment part. And then we partner with the most credible medical institutions around, like Cleveland Clinic and Yale Medicine and different groups and then foundations, like the PMD Alliance and Breast Cancer Research Foundation, different groups, and they give us that content they've already created. That's vetted content that already comes in. But what we're really looking is that story. So if you think about a story with someone with a chronic condition, 80% of people really experience very similar things. It's that 20% that makes it different based on what they have. So we really can learn from any story. Right now we're focused on Parkinson's disease, it's a fascinating disease where everybody approaches it differently. But at the end of the day, all these people feel the same way. They want to find out the best way to live with Parkinson's. They want the best quality life they can have. And they want to be an active member of the community. So regardless of what story we tell, we're always going to be showing tips and ideas and how people have overcome those situations. So, it doesn't really matter if you have a different disease. Now, it will matter when we connect you to research and connect you to clinical trials. But just in terms of really empowering yourself to really take control, there's learning from every person who's living with a chronic disease.

Joyce: That’s really, that's really true. And, you know, so really what you're saying is that people, patients, can trust Mediflix, right? Because of who it is that you're bringing to the table. I know you talked about that a little bit. Can you unpack it a little bit more for us? You mentioned PMD Alliance. Can you say what that is?

Sharon: So the PMD Alliance is the Parkinson's and Movement Disorder Foundation and Alliance and they're just they're educators, they're out there every day trying to help the Parkinson's community. So it's all about Parkinson's. There our local group that has a Facebook group, a support group. So we want to bring those people in and those groups in because they're doing the everyday hard work of really communicating to these audiences. Cleveland Clinic's another example. Cleveland Clinic is out there, they're educating their the group around them. We want to connect people to Cleveland Clinic because they're reputable. So at the end of the day with Mediflix, we hope to have 15 to 20 of the largest and most reputable medical institutions that we can. And, importantly, we don't have ads on our site. We're not trying to push a certain therapy or product or brand. What we really want to do is we're pushing into information, disease awareness information, unbranded information, information that you can use to make your own decisions.

Joyce: That’s really huge. And I love, too, that you have these experts, not only these organizations, but actual individual leading experts, you know, in various chronic illnesses, right? Who can actually, who are vetting your content, right? I mean, you're not just putting things up because, oh this looks good. I mean it's actually going through a lens, right? Of an expert point of view?

Sharon: Yeah. I mean, we need peer-reviewed, right? We have to make sure at the end of the day we don't contribute to the problem of too much information, that we help solve the problem. We have 37 directors across different conditions and then each of those essentially have a group of experts underneath them that help us fill out the categories. But every one of these experts you'll speak to, whether they're the top expert at HSS or the top expert at Yale or anywhere, what we learned from each of them is that every person they can help they'd like to multiply that by hundreds and that's why they're interested in working with us. Is that they're very satisfied with the people that they can speak to one on one, but they want to amplify that. They want to be reaching thousands, hundreds of thousands of people. And I use obesity as an example. In obesity, there's only about 48 hundred certified obesity specialists in the United States. Yet as a country where almost at 50%. It's becoming an epidemic, it's our next epidemic. So what happens when we educate people, where do we send them? I mean, where are they really going to get the help they need? So what we're hoping to do is by bringing them into the fold that we'll give them the strategies and tools and information to help get them on the right road.

Tracey: Yeah. And Sharon, you bring up a good point because I was having a conversation with a different chronic condition advocacy group and they brought up the fact that there were such a small amount of specialists within this particular so people were waiting six months to get an appointment. So it is important pre-diagnosis and post-diagnosis to have, you know, other information, other places to go to because you're only going to get to see that specialist for sure period of time infrequently. Do you feel like that's a place where you can play?

Sharon: Yeah. So one of the fundamental sort of offerings that we have is access to the physician. So you can't talk to all these people, right? Because there's just too many people trying to get in. But what we're doing is we're creating a personalized approach to questions, Q&A, that people can go into and they can have a guided discussion based on information with one of the experts. We’re also creating live summits where we do live meetings like this but we take questions, we have an audience there and then actually we take questions from the audience because we want to get real-people questions answered. So what we want to do is we don't want to prolong it, I don't know about you, but I've been waiting, you know, sometimes, I'll wait 3, 4, 5 months to see an expert and then find out I'm not at the right place. That I actually should be somewhere else and then I have to start over. So it's not a very efficient system the way we've set it up so if we can help cut through some of that and we can actually help get people to the front of line, so to speak, by getting some of their questions answered we're hoping that we can get people in the right place at the right time, so that they can have the best chance for the best outcome.

Joyce: You know, I love this conversation about asking questions because there are data that show that if we're asking questions of our healthcare providers, whether it's in our consultation room or as you're saying through access to experts, you wind up with a better health outcome at the end of the day. So even the simple questions, like well, what other options are there or can you please explain the stakes to me of this once again, you know, making sure that we really understand it like we say like, what's health literacy? You know, it's that. It's having that confidence of understanding.

Sharon: And I think answering questions is paramount, but how about knowing what questions to ask?

Joyce: Exactly.

Sharon: How am I supposed to know that? You know, we're dealing with these diseases we're dealing with these different things that are going on, but at the end of the day, I don't always know what the next question should be. So our goal is really by these guided discussions to say, if you asked us this, you probably should ask this and this. Or, do you want more information on this, this, and this. And the same holds true is by giving and giving access to the same Q&A to families and caregivers. You know, we all are going to be a patient one day. But we're all really caregivers, whether we have around children or we have parents. At some point in our lives, we're taking care of one or the other. And it's hard to hear and you really want to be a partner in their care. And you may have different questions than they have. They may be afraid to ask certain questions. So having this ability for them to really educate themselves and be that other sort of partner and care I think really is something that will help lessen some of the anxiety that comes with some of these conditions and also helps again point people to the right place.

Tracey: Totally agree with you. I know, Joyce, when, you know, that's the reason why her United States of Healthcare. I just went through something similar, much less intense than Joyce's. But just being there for that person and being those eyes and ears. And also as the caring person, you have a level of anxiety. Right? I think sometimes we forget about it, of course, the patient is front and center and you want to make them feel as good as possible, but there is a flow off of the, the other, you know, the caregiver is a stakeholder in the family. And how are you giving them that peace of mind or the information? Because you don't want your anxiety to impact the patient's anxiety. 

Sharon: Right. I think it's critical to give them a role, right? So you know some people, some people need more information, some people need less, some people need to be around people more. Some people want to be more by themselves. So if we can empower the family, you know, any chronic condition or any real serious condition, acute condition, affects the whole family. It doesn't affect one person. Nobody's going through this alone. So if we can give each people the information and arm them with the tools, we can actually set them up for better success because then they know how to relate to each other. They know the questions to ask. In our Parkinson's programming one of the things we asked the experts to talk about is, when do I tell my family? When do I tell my coworkers? When do I let my boss know? What are my rights underneath that? What do I have to prepare for? What is this going to look like in five or ten years? You know, what should I be thinking of today? And then the idea is not to give it all to them at once because, you know, the last thing you want, when you get that diagnosis is be thinking about, Oh my God, like I have to deal with this, the rest of my life. So it's helping people choose and guide them and show them. This is a journey. This It is a path. This is a successful path. You can, and there's no testing on our path. You can, you know, no one's going to give you a grade, so you can go at your own speed and at your own time.

Joyce: Right. Your own time. So tell us about some of your special projects like what makes Mediflix different. Like, why do we want to go there?

Sharon: I’m hoping it's the storytelling and it's the people telling the stories. We're working with a surgeon right now who actually at one time was 460 pounds and we're telling his love story. He has a love story with his wife. And we're telling some about somebody who lost a couple hundred pounds and kept it off and has been successful, but he tells the story about not only having weight bias, but also having just, he's black and just having the bias of that, he calls it the double whammy. But we're telling a health story but we're telling a very relatable story about somebody who couldn't really, had to fight really against a lot of odds just to get to where he was while he was dealing with this issue, this health issue, and his whole family came along. His wife has written books about stealthy, healthy eating, and how she substituted foods. They talk about vantage points, how they would go into a situation and he would be feeling one thing because he couldn't fit in the seat and she'd be feeling another thing because he couldn't enjoy a show and it was like, they just weren't really communicating. So we're hoping that's the kind of thing that will be different. We're working on a program that should be very exciting for Alzheimer's patients that we think will really bring people in and help tap into that a little bit. And then we're working on the personalization, really bringing the whole platform into a personalized journey, so that you really will be guided, you'll be served up different things, maybe something you might be interested in, something you should know about, maybe someone you should meet.

Joye: That’s great, it's great. Super, super super super.

Tracey: So at some point, you'll be up for Academy Awards, Emmys, things like that.

Sharon: So we've been trying to work with only Emmy Award-winning producers. We have one who has been nominated 23 times, so we're hoping for a win, so we'll see. But that's not really what it's about. The good parts about really, I mean, why we say that, when we promote to people that we're doing that because we want to tell the best stories, we want the stories to come through. But we also want to put the power back into the physician and the expert's, back into their hands. We want them to tell us what we should be doing and it's not one way fits all. So we need to give multi-disciplinary options. We have to take into account where people live, how they live, and we have to be really, we have to really say to them, you know, we don't all have access to the same opportunities but we have access, but we should have access to the same information. If nothing else, we should know the same information. And that's really where we're trying to live and that's sort of the playground we're living in. So it's very exciting for us. We're meeting incredible people. I haven't met one physician or one expert or one patient who doesn't want to help other people have a better experience than they did. And it's really rewarding, you know. We beat up this industry, the healthcare industry so much every day, but really it's a collection of really good people. Smart people trying to do things that help people. And if we can let that shine through and focus on that and I think that, you know, hopefully, we're onto something.

Joyce: I think, I definitely think you are. I think there's so much to be said about being able to tell those empathetic stories, right, that anybody can relate you can relate to the struggles, and then the solutions. Okay, here are the pro tips. That's what we try to do at United States of Healthcare. Yeah, we're going to tell you a story, right? So that you can relate to that story, and that human being. And then we're also going to give you the pro tips. Like, even those of us who know a lot about healthcare, we wind up in the system and we're like, oh, holy smokes, even I, with everything that I know, I'm coming up against hardness. Right? So, how do I then, you know, share, an experience, a tip, so that somebody else doesn't have to go through go through it in the same way. Learn, even when you know what question to ask, it's how to ask the question. There's even, you know, there's that, too.

Sharon: Right. Absolutely. I mean I think, you know, like everything that the three of us are doing multiply that by the hundreds and thousands of people trying to do stuff. We're trying to cut through that. We're trying to create again a path and the path isn't a substitute for what anyone else is doing. The path is to help you and illuminate those places along the way. So that together we can see what will work for us.

Tracey: I think it's important to understand that we're all individuals. So even though there's a median that you're talking about of this, okay, this is where the baseline is for these particular conditions. There's also that individualities that we have to account for that I think sometimes get lost and it's great that you're honoring that.

Sharon: And we have to tell good positive stories. You know, there's a lot on TV that sort of likes to look at the underbelly of what people are going through. It's not helpful for people who are in the middle of it. So we have to find a way and that's the balance of education of edutainment so the education with the entertainment. Making sure that you serve each up together, equally, so that at the end of the day you leave people with something that's positive and something that's proactive.

Tracey: So just checking to see if anybody has any questions out there. We're coming to the end of our time. We like to keep these reasonably time. So Joyce, you want to close it out here?

Joyce: Yeah, I just want to say thank you so much Sharon for being with us tonight and this afternoon, wherever you are. And thank everyone, again, our audience for being with us and for continuing on in this quest for better healthcare for ourselves, for our families and for the planet, it's great.

Tracey: Thanks for joining us Sharon.

Sharon: Thank you. And check us out at www.mediflix.com.

Joyce: Absolutely. Thank you.

Tracey: Thank you. 

Sharon: Thanks very much. Bye bye.