Get Social Health with Janet Kennedy

Today’s on Get Social Health we’re talking about a project called My MG Sole. It's new collective art project designed specifically for people with Myasthenia Gravis, a rare autoimmune condition. The goal of the project is to help people in the MG community defy social distancing by uniting as a community online. In this time of intense social distancing, the separation of those with chronic illnesses, like MG, from their family, friends and community - who understand what they may be experiencing - can feel more like extreme social isolation.  The project is sponsored by Argenx, (Are Gen X) a Boston based biotechnology company developing treatments for severe autoimmune diseases. With me here today are Annalise Hammerlund, an Expressive Arts Therapist and Mental Health Counselor from Grand Rapids, Michigan. Also joining the podcast is Susan Woolner. She is the Neuroscience Patient and Caregiver Support and Community Manager for Mercy Health Hauenstein Neurosciences

For all my Digital Health listeners, I wanted to share this interview with Jen Goldsack of the DiMe Society from the "People Always, Patients Sometimes" podcast. This podcast is a production of Spencer Health Solutions (full disclosure: my day-job!). Our podcast focuses on the innovators, thought leaders and patient influencers who are demanding change now in clinical trials The Digital Medicine Society is a group of individuals who are committed to innovating and transforming how digital apps, medical devices, software and processes can positively impact healthcare and clinical trials. Since Jen handles all my questions so well, it didn't make sense to repeat the same interview for Get Social Health. Here is the interview and transcript from my interview with Jen Goldsack about the DiMe Society on the "People Always, Patients Sometimes" podcast. The DiMe Society – Jen Goldsack It’s time to discuss the digitalization and democratization of medicine so we invited Jennifer Goldsack to join us on the “People Always, Patients Sometimes” podcast.  Jennifer is the interim executive director of the DiMe Society, pronounced like the coin, an abbreviation of the Digital Medicine Society.  In our discussion, Jennifer spoke about the “trans-disciplinary nature of digital medicine as a field” and how, without professionals from every field at the table, the healthcare community will make mistakes and under-deliver on possible treatments for the individual.  As a nonprofit, Jennifer explained that “we do welcome all comers” at the DiMe Society – unlike other organizations, the DiMe Society charges individuals only $50 for membership, creating a low barrier of entry and ensuring accessibility to everyone. The DiMe Society was created with the mission to facilitate interdisciplinary collaboration between professionals within the global healthcare and technology communities in their research, teaching, and promotion of best practices in medicine.  The DiMe Society believes that everyone has something to contribute to the advancement of medicine, from white-hat hackers, engineers, and clinicians to citizen scientists.  Founded earlier this year, the DiMe Society already has around 700 members from 24 countries after only 5 months of opening their doors. To learn more about how Jennifer and the DiMe Society cultivate collaboration in the field of digital medicine, click on the link and listen to this week’s episode of People Always, Patients Sometimes, hosted by Janet Kennedy.  

Health literacy is a relatively new term that is getting a lot of attention, but what does it mean? Does it have to do with reading ability or reading comprehension? Is it the responsibility of the healthcare provider or the patient? October is Health Literacy Month, so we're going to learn more about the meaning of health literacy from Lori Hall, director of global health literacy for Eli Lilly on Get Social Health. On the start of Lori's career: "In my career in nursing, I started out in the newborn intensive care unit. It was a wonderful opportunity to make a difference every day for patients and parents have these tiny little newborns. Although I didn't know about health literacy or health education then, I think it really had a strong presence even in the mid-eighties when I started my career. And that's been a common thread throughout the roles that I've had in healthcare. I look back at that common thread often now and recognize how I've been able to pull something from each of those experiences. That served me really well today in my role as the advisor of global health literacy." More information: Health Literacy - Extruded Cornstarch Emulsifier? Health Literacy - Medical Information Health Literacy Month Lilly Trials - Word of the Day Roundtable on Health Literacy Contact Lori LinkedIn

ePatient Dave - Part I I'm honored to have Dave deBronkart on the podcast today. He is the original "e-Patient" and has a lot of stories and interesting projects to share with us today. As a matter of fact, so many interesting projects that we're going to break this into a two-part discussion, so join me for our conversation with e-Patient Dave on Get Social Health. Podcast Transcript Announcer:                      00:22                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real-life examples of healthcare social media in action. Here is your host, Janet Kennedy. Janet:                                00:48                   Welcome to the Get Social Health podcast. What an honor for me to have Dave deBronkart on the show today. He and I met through the Mayo Clinic Social Media Network and have run into each other a few times at healthcare conferences. It is such an honor to have him here. He's known on the Internet as ePatient Dave. He's the author of the highly rated "Let patients help patients" engagement handbook and he's one of the world's leading advocates for patient engagement. After beating stage four kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. Dave, welcome to the podcast. Dave:                                 01:25                   It's an honor to be here. That's what healthcare needs, so I'm really glad I'm quite, you do a good professional job of it. Janet:                                01:33                   Thank you so much Dave, and I'm really thrilled to have you here. If anything, to give you an hour to sit down in a chair and just have a conversation because when I looked at your website and all your speaking engagements coming up, I was absolutely blown away with how active you are. You are talking to a lot of people these days. Dave:                                 01:52                   Well, do you know I can't sit home and be an evangelist. You've got to carry it out into the field. And as it happens, through one of the strange quirks of the universe, when I accidentally found myself, it was actually 10 years ago this month, that I found myself on the front page of the Boston Globe because of a blog post I'd written. People started asking me to give speeches on the topic and I had learned how to do that when I worked in marketing. The last thing I ever would have expected coming out of cancer is that it would turn me into an international keynote speaker. Janet:                                02:26                   I love that. I love that you felt that this is a mission worth all of your time, that you really wanted to commit to that. I know that we're going to gloss over your early story because I think a lot of people know who you are, but what you represent an almost more than any other patients we've spoken with is that you're a mature individual and you have a length of view that is longer than many of my guests. A lot of ePatients who are involved and engage these days tend to be in there like twenties and because they have always felt that social and digital was a way to tell their stories. You and I represent more of the boomer generation. Dave:                                 03:07                   Uh, we're not so forthcoming. Janet:                                03:09                   I'd love to get your perspective on this 2009 - 10 years ago when people first started you to speak as an engaged patient and an empowered patient. What's happened since 2009 to today? Dave:                                 03:23                   Well, you know, I've just been reflecting on this because 12 years I got the diagnosis to nearly died, but God cured within a year. That was 2007 in some speeches. Now I customize every speech for the audience, depending on what they're up to. Sometimes the best message is if you live long enough, things really change. And what's important about that is people tend to achieve a certain level of seniority or accomplishment in their profession, whatever it may be. And they feel like, dude, I got this, I'm good at this. And then 10 years go by and all of a sudden what was important before isn't important anymore. And you've got youngsters nipping at your heels and you got to think it all out again. So consider in the middle of my treatment, Apple introduced a product called the iPhone. You know, and you think that the world might have changed a bit since then. Dave:                                 04:20                   So, well, and that's a, you know, apps and everything. And this is why in my career in business, I was involved in quality improvement projects, countless meetings over the years with different companies about rethinking how we go about doing things, what are our customer's priorities and so on. So I naturally, when people started asking me to talk about how care, particularly patient engagement, I looked at it through that Lens. So what has changed in 10 years, 12 years and years since the front page article is, I've learned a lot more about what's changed in the industry as a whole. A lot of people have been trying to do patient engagement, patient empowerment, and a whole lot of people have been pushing back. But it turns out that a lot of big reason for that, you can't do patient empowerment and engagement with any sort of completeness unless the patient has access to the medical records. And there has been feeble lip service in the past because the technology didn't support it. But you know, the biggest change in what it looks like if you look out to the horizon is the technology is coming along and the culture is finally coming along 10 years later to make it possible for us to get all of our information. Janet:                                05:50                   And that is really the foundation of helping patients knowing and participate in their health journeys, right? They have to have access to what the doctors are saying about them and what the doctors are cataloging about them, correct? Dave:                                 06:04                   Well, in general, yes. Now, not everybody one flat. All right. Because the whole principle of patients that are care is that people are different and you can't treat everybody the same. It's, I've found it's useful to point out to people, especially if it's an audience that is in the younger parents category. Like my daughter is, I have a five-year-old granddaughter, excuse me, 5.8 years old. Dave:                                 06:32                   Her mother is a science teacher, she is 5.8 years old. Anyway, people who are recent parents, no, you can't treat all little kids the same. Some of them wanted to take things slow and easy, somewhat excitement and so on. Some patients during my illness, the nurse practitioner over men, that's just my case said that she used to work in pediatric oncology and sometimes the patient couldn't articulate what was important to them. First of all, not everybody cares about seeing what's in their health records. My parents are polar opposites on that. My father just said let them do their job. It's my mom is just on top of everything checking to make sure they've got her allergies and medications right and everything. My point is it is perverse. Take, keep people like patient in the dark about something and then go around saying they wouldn't understand. They don't know anything about this. Dave:                                 07:33                   You see my point? It's exactly, there's so many parallels between the ePatient movement than the women's movement. When I was a little kid, people were always making jokes on TV about women drivers. Well, women were not experienced drivers in the early 1950s generally, you know, the remedy was not to keep people in the dark. The remedy was to get them involved and make them experience. And that's my point with patient access to the medical record. It's really is unfair. It's an unfair burden to expect the providers to be on top of everything because there's so much stuff in a chart, it really is much better to let patients help. Janet:                                08:18                   So are you saying that, and I agree with you totally, I love your analogy too. Hey, nobody's going to get to be a better driver unless they get to drive. No one is going to appreciate their health records unless they see their health records. But are you saying that this is literally just having access to the EHR, whether you choose to engage with the electronic health record or not, is the point or is there a deeper level of information you think that patients need? Dave:                                 08:42                   That's an excellent question. I have a lot of conversations on this subject and that's a razor-sharp question. My goal is not to make people do anything a particular way. It's to help healthcare achieve its potential. I am deeply grateful to the highly skilled, trained, educated doctors, nurses, assistants, everyone who took good care of me when I was dying and in my business troubleshooting mindset. When I hear all the stories about medical errors or somebody didn't know about a side effect or just there are so many ways that the flood of information out there might not get to the point of need at the moment of need and what I want. First, we troubleshoot. We say, wow, there is too much information for anybody to know everything, so now what can we do? Some people say, well, it's the doctor's job to know everything. Dave:                                 09:50                   Well, well, I know you and I were immersed

Have you heard the term Patient Advocate? How about the expression "not about me without me" in the patient space? So often over the past decades, if not hundreds and thousands of years, the patients have sometimes the least consideration when healthcare decisions have been made. Well, that's changing due to empowered patients who are using social media, online resources and the ability to connect with other people of like situations. Patients now are finding that they not only have a voice, but that voice is starting to be respected and drawn into the healthcare community. Today on Get Social Health I'm very proud to be speaking to Lilly Stairs. She is a leading voice in the rapidly growing patient engagement field. This will be the first of a number of podcasts that I'll be covering where we'll be talking with patients or about patients and their engagement in healthcare. So join me for a discussion with Lilly Stairs on Get Social Health. Connect with Lilly: LinkedIn Twitter Follow the conversation or drop in at the timestamps below: Janet: 00:00 Announcer: 01:07 Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy. New Speaker: 01:33 Hey everybody, this is Janet Kennedy. Welcome to Get Social Health. On today's podcast, I am thrilled to be finally talking with Lilly Stairs. She is head of growth and partnerships at the Savvy Cooperative. We're going to hear a lot more about that in just a little bit, but first I want to set the stage. Lilly and I have known each other through social media for quite a while and one of the things that she brings to the table is the importance of including patients in the discussion online and in the work of healthcare. So whether it's the work she's doing as a speaker or the company that she's with, she really has a fascinating perspective on getting patients involved. And why is she such a strong patient advocate? Because she has battled a couple of very serious chronic health issues and I think you're going to find that really interesting to hear about. So without any further ado, welcome to the podcast. Lilly. Lilly: 02:31 Thank you for that lovely introduction, Janet. Janet: 02:35 You know, it's tough when you're really representing well, every part of healthcare. Which hat you put on must be kind of confusing. Lilly: 02:42 It is. You know, I always, I do joke all the time about how I wear so many different hats and now I have to take them on and off and sometimes they wear them all at once. They've even done a post on Instagram ones where I put a bunch of different emojis on my head representing all the different hats that I wear. Janet: 02:59 No, that actually makes perfect sense. I appreciate that you're with a company called Savvy Cooperative, and I think it's a fascinating concept. I love the idea of how it came about and I want to hear more about that. But first, why don't we set the stage? Can you tell us all a little bit more about your personal health journey and really how you got to the place you are today in some ways, patient number one, and how you were able to translate that into a life worth living and a career. Lilly: Oh my goodness. So I never thought that I would end up in health care, to be honest with you. I didn't even know what the term biotech meant. And here I am working hand in hand with the industry, but when I was 19 I actually started having this pain in my left knee and we weren't really sure what it was. Lilly: 03:51 I had just wrapped up my freshman year of college at Northeastern University in Boston. I absolutely loved it, couldn't wait to get back. I was home for the summer with my family and we went on vacation and I started to wake up every day and my body was achy and I was like, ah, you know, maybe it's the beds. But then I thought, Huh, well I'm in college. I could really sleep anywhere and I, I'd be fine. I ended up getting home from vacation and all of a sudden I woke up one morning and I couldn't move. I was paralyzed with pain literally throughout my entire body, unlike anything I had ever felt before. And My mother ended up having to dress me and feed me because that pain was so severe. And so I started going in and out of doctor's appointments. They were not sure what was going on. They thought potentially it could be Lyme disease or Parvovirus. Finally, we had a doctor who said, and then they told my parents at the time, first that we think Lilly has psoriatic arthritis. And I remember my parents communicated this information to me and I just stood there, speechless, devastated, heartbroken. You know you hear arthritis and you think of your grandmother who just gets arthritis in her hip or her knee. You don't think that as a young, vibrant, 19-year-old woman that you're going to receive such a life-changing diagnosis. And so I decided against the doctor's wishes at that point to go back to school. And I was waking up every morning having to take a hot shower to warm up my joints. Hours before class. I tried to find seats on public transportation and when I was sitting down, but an elderly person got on the train, people would look at me like, why isn't this young millennial getting up for this elderly woman? But little do they know that I'm probably in more pain than that, that elderly woman and so on and so forth. Lilly: 05:42 And six months after I received that psoriatic arthritis diagnosis, I ended up in the hospital. I was in and out of the ER three times in one weekend with excruciating stomach pain. The doctors didn't believe me. They thought I was faking it, which is, unfortunately, something that happens often in our healthcare system to women. And after I was admitted, they ran a number of different tests. Over the course of a week, I lost 30 pounds, was on 90 milligrams of morphine, and the doctor said, listen, we've got one more test that we can try and if this doesn't show anything we don't know what's going on. And so I, I took this pill that actually took pictures as it moved through my body every three seconds. And it was at that point that they discovered I had bleeding ulcers in my small intestine and they diagnosed me with Crohn's disease. Lilly: 06:31 And so within the course of six months, I had received two life-changing diagnoses that I would live with forever. I remember pulling up my computer and while I was sitting in the hospital bed and I started typing in Crohn's disease and psoriatic arthritis and what comes up, but the term autoimmune diseases, turns out there are 50 million Americans who are living with autoimmune diseases for point of reference. That's about twice as many as people with cancer. I just remember her being so angry because I had never heard the term autoimmune disease before, but here I was living with two of them and there are 50 million Americans who are in during this unbearable pain and suffering that I've been through and I was just so angry and knew I had to make a change. So I like to say that my truest self was really unearthed in the hospital bed and it was at that point that I decided I'm going to do something about this. Lilly: 07:22 I'm going to raise awareness for people battling autoimmune diseases. I'm going to help find new treatments. And so I ended up going through over the next couple of years, went through a number of different treatments because it's as an autoimmune disease patient, it's really hard to find one that works. I am very fortunate to say that I've been in medically controlled remission for five years now thanks to the amazing work of the biotech and pharmaceutical just strain. And that led me into my transition into healthcare. I basically was diagnosed at 19 so that was around when I was starting to do ops at an internship and jumped right into healthcare, started working at mass bio, the Trade Association for Biotech and Pharma companies and learned about patient advocacy as a career track when I joined them. And from that moment on, knew that I had to, had to be in patient advocacy. And so that was my transition into the space. Janet: 08:14 What a fascinating story. Now, these two issues are not related, right? It was just horrible luck that they both happened to you. Lilly: 08:23 So they actually are related. They're both considered autoimmune diseases and it's, I, I have a friend who says autoimmune diseases are like chips. You can't have just one. And that is the case for many. It's that you'll feel, and there's over a hundred different autoimmune diseases. So lupus, MS, Psoriasis, those are all considered autoimmune diseases and many people who get one often end up getting a second or a third as well. Janet: 08:49 Oh, well there's something I've learned today. So you've already done your job for the day. Excellent. Lilly: 08:56 Raising awareness. That's my big goal in life. Janet: 08:59 When you serve as a patient advocate for a company, what does that really mean? Lilly: 09:03 Yeah, it's an interesting question. It means something different depending on the company. I think there's an important distinction because there are some companies who truly embody this patient-centric mindset and I really hate the word patient-centric and I think a lot of people do in the industry but its sort of what we're stuck with. If you don't say your patient-centric then people think you're a bad company. It means that you are the person within the company who is championing the patient voice. You are working across teams to ensure that the patient voice is being infused into the work that you're doing and you are fighting at the table. You ideally at a company, you're in a leadership position as a pa

A healthcare website is a critical element in patient communications even before they become a patient. Setting up and maintaining an active website is not easy and requires specialized skills. On the Get Social Health podcast, Janet Kennedy interviews Ajay Prasad of GMR Webteam and the work they do create and optimizing healthcare websites. Listen to the podcast or drop in on the timestamps below:  Janet:                                00:00                   Five years ago or so, you used to be able to build a website and expect that patients would come. Well nowadays "if you build it. They will come" only works for baseball fields, built in obscure corn fields in the Midwest. Now you need a real digital online expert as part of your ongoing web presence and I've got one for you today. Joining me on the podcast is Ajay Prasad with GMR Webteam and we're going to talk about those other things you need to do besides have a great website on Get Social Health. Announcer:                      00:40                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real life examples of healthcare, social media in action. Here is your host, Janet Kennedy. Janet:                                01:07                   What are the important things about being accessible to patients is to be, I found online and that isn't as easy as some might think. It's not as simple as putting up a website and the patients will come. With me today is Ajay Prasad. He's got his own company, GMR Webteam, and they're doing some really interesting things with online presence for a wide variety of health care practices. So I wanted to drill down a little bit and invite him on to Get Social Health so I could ask a lot of the dumb questions that honestly I still need to ask and I'm sure as healthcare practitioners you might need to ask. Ajay, welcome to the podcast. Ajay:                                  01:48                   Thanks, Janet for having me. And I'm excited. Janet:                                01:52                   This is a very interesting subject to me because I am involved in a part of this equation, but not the whole equation. And what I mean by that is my partner, Carol Bush and I have a company called the Healthcare Marketing Network and we source freelance healthcare writers, many of whom are clinicians for companies like yours. But in many cases, good content is just one part of a good online presence. So I wanted to talk to you today since your company focuses on healthcare and learn a little bit more about what is unique about that and what is unique about having a presence as a healthcare practice. But before we jump in, I think people need to know a little bit about you. So tell me a little bit about your company. I know you didn't start exclusively in health care, so tell us a little bit of the journey of GMR. Ajay:                                  02:42                   Sure. Before I even started my company, I had a very extensive experience in marketing in general and the last couple of years in the Internet marketing, which was a very new thing. I started GMR Webteam in 2004 so we'll be celebrating our 15th anniversary in a couple of months. When I started, Actually you'll be surprised, very few people even had website. So we started then and, and my goal always was to help businesses really get the most out of Internet, which was like a mystery in those days for them. Now everything has gone to internet, so it's no longer a new thing. That's where I started. My personal background has been in, you know, doing marketing in several industries. So I did not start with, with any kind of specific focus on healthcare. I was doing marketing for all kinds of businesses and I had several businesses, but over a period of time, we started to realize that in the healthcare area and whether it is medical practices or urgent care center or dental practices, smaller surgery centers, generally speaking, they will understand the least of it, you know, digital marketing. Ajay:                                  04:01                   And they were the ones who really needed it, but they did not realize that they needed it. They don't have the expertise. As you know, you won't run into many medical practices who have like a marketing manager. So we started to, I started to realize that we're becoming like a marketing department. Think offered as far all our healthcare client. So the gradually we just moved away and we stopped taking any other client. We just totally focused on healthcare because we started to also see that the healthcare marketing was fairly different from, you know, not conceptually, but on a day to day basis. You know what is important was so different that by focusing on just the health care practices industry, we could become more efficient. So that's when, so gradually we moved away or always even among my first clients were healthcare providers, but now we just totally focused on healthcare. Janet:                                05:00                   I have a couple of questions based on what you just said, so we're already starting off with, you know, it is a mystery and yes, I think in 2004 there were a number of practices, if not the majority of them, didn't even have a website. I've also heard that there are still healthcare practices without a website. Many, many healthcare practices without a website, which really baffles me. But I think the part of the reason is, the older practices, all the partners don't understand because they are not active online so they don't get it. But as they start to get younger partners that's the first thing that it seems like the younger partners want is a website. Because guess what, the younger population, they are on the net a lot, so then they know the value. Janet:                                05:54                   Absolutely. The other interesting thing is while those providers themselves may not be utilizing online, what are the fastest growing groups in Facebook and online is the 65 plus, because guess what? They hit Medicare and now they really need to understand what's going on. Ajay:                                  06:11                   Exactly. Right. You are so right. It used to be that Internet presence are, the market was only for the younger people, but now the biggest growth is in the older segment and really I an internet, they're realizing it's not a big mystery one Google, you type a question and you'll get the answer. Janet:                                06:31                   Okay. But I think that mystery is how Google makes that look so simple, but there is so much happening underneath. You know the old adage about a duck on a pond and they look like they're just swimming along nice and smooth but underneath their feet are going a mile a minute. And that's how I feel the Internet is to me. There's a whole lot going on under there. I don't understand. Ajay:                                  06:54                   That's exactly right. When you go on Google and let's make it relevant for the audience and and say you are in, I live in Irvine, California. So if I go on Google and just, and if I'm looking for a say a primary care physician for example or ophthalmologists and if I type up their model is in Irvine, yes, you'll find a lot of you know, you will see the list of ophthalmologists, right? But how they appear in what sequence, you know, first thing I can tell you that not all ophthalmologists will will show up and the ones who show up, you know, why someone is showing up on top ranked number one versus of why someone is showing up on page two, page three? There is a, there is a very, I would say well defined logic behind all that. So just like you said, you don't see how fast, you know what is happening on the under the water. Ajay:                                  07:48                   See I behind the scenes there a lot of activities that is being done and that's why you see someone show up number one. And, and just to let you know on Google and the value of it, if you are number one... suppose there are a hundred searches for ophthalmologists in Irvine. I'm just throwing a number and if you will show up on number one 35 people, we'll we'll go to our website. Click. Generally this is, I'm giving you a very broad, Google start. If you are number two then you will have 15 people. If you are number three then you'll have 10 people who are searching for will, will show up and beyond that now you're looking at a handful, four or five people. That's it. So it's makes a big difference where you are ranked in terms of what kind of results that you will get. And how you're ranked is, you know why you should be on number one versus number 10 or number 30 on Google listing. That is a mystery that needs to be solved and that's what we solve. Janet:                                08:49                   Right? Well, you've heard the expression "Where's the best place to bury a body?" On page two of Google! Ajay:                                  08:55                   Exactly. Janet:                                08:58                   Okay, so can you buy your new way to number one? Can I just buy an ad and be number one? Ajay:                                  09:04                   So you know, the answer is yes, that you can buy an ad on number one. But here's a challenge. So if you don't have a very good web presence, then you will have to pay a fortune. And it's still, you may not be number one because we will now, even if you're paying Google money, they have a very strict requirement that you have to meet in order to, to show up number o

Seth Rotberg found out as a 15-year old that his mom had a rare neurological genetic disease known as Huntington's disease. Five years later, he tested positive for the disease. Today I'm talking with Seth about secrets, strengths and recognizing the power of community on Get Social Health. Connect with Seth at the links below: LinkedIn Twitter Website TEDx Natick Interview Transcript Janet:                                00:01                   Seth Rotberg found out as a 15-year old that his mom had a rare neurological genetic disease known as Huntington's disease. Five years later, he tested positive for the disease. Today I'm talking with Seth about secrets, strengths and recognizing the power of community on Get Social Health. Announcer:                      00:21                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy. Janet:                                00:48                   Welcome to Get Social Health. My name is Janet Kennedy and I'm the host of the podcast in case you didn't know. Today I have a special guest on who is going to share a very personal story of his own health journey, and how he is using that experience and his situation to make the journey for a lot of other people. Seth Rotberg is a rare disease advocate and a motivational speaker and he's got a really amazing story to tell, so I'm happy to have him join me on the podcast today, Seth. Good morning. Seth:                                  01:20                   Good Morning Janet. How's everything going? Janet:                                01:23                   Well, as we spoke before, I'm getting over a little bit of a cold, so I'm going to sound a little funky to my usual listeners today. But it's a beautiful day in North Carolina where we have eight inches of snow. Also a rare situation. Seth:                                  01:38                   Yeah. Well, I can't complain myself. Being up north in DC, you know, it's nice and warm here. I think 30 degrees? Janet:                                01:51                   You are in Washington DC now, but you are a Massachusetts boy. We were talking about both sox and teams up in the Boston area. So tell me a little bit about where you grew up. Seth:                                  02:09                   Well, first off, I do have to say it's exciting to grow up with a lot of gray Boston sports, especially with the Red Sox winning the world series this past year. I grew up about 30 minutes west of Boston in a town called Natick and I'll just jump right into it. Seth:                                  02:27                   My mom had this rare neurological and genetic disease not as Huntington's disease is also known as HD. Similar to having ALS, Alzheimer's, and Parkinson's all into one disease, slowly deteriorating a person's physical and cognitive abilities and unfortunately currently there's no cure. I found out my mom had this when I was 15 years old when she was officially diagnosed. However, prior to that she was like most people misdiagnosed for about seven years, was a long time to for someone to be told that they have depression or bipolar disorder and then find out it's even worse than that, which is a disease without a cure. Growing up it was very difficult, especially as a young person, which is kind of where we'll talk about later. The work I'm doing today focusing on providing resources and support for young people impacted by rare chronic condition, more importantly in the Huntington's disease space. And then we can talk later about my professional career trying to connect patients and caregivers. Don't one another anonymously in the health space. Janet:                                03:37                   Well this is something that is also a hereditary disease? Seth:                                  03:43                   Yes. You mentioned hereditary and when I first learned about it, and I'm going to take everyone back to biology class where you do those Punnett squares. Do you remember that at all, Janet? Like the Punnett squares, we have the match like the upper case and lower case like the dominant and recessive. Janet:                                03:59                   Are we going to talk about peas in a minute? Seth:                                  04:02                   Yeah, we might. I mean my thought was with a disease they say, well if your Dad's dominant recessive. And so when I did it, it was like, , I'm in the clear I'm all set, but that's not how a lot of these rare diseases work, especially Huntington's where I'm at a 50/50 chance of inheriting it. It's a simple flip of a coin and it's tough to really look at that and say, well where's my future going to end up? Am I going to end up just like my mom or am I going to end up props testing negative and having survivor's guilt, and that's when I ultimately decided at the age of 20 to test for Huntington's disease where I found out I tested positive. I'm a gene carrier and one day know that I'm going to end up just like my mom just slowly deteriorating both physically and mentally and not much I can do at the time. Janet:                                05:00                   So is it a given? If you have the gene, that's it. Seth:                                  05:05                   That's it. Yeah. I mean, unfortunately, that's how it is. And what's unique about Huntington's disease is that they can test it, they know where it is, but it's such a unique gene that you would think that they'd be like, here's how we cure it, but of course like any rare disease is a lot tougher than just saying, hey, we're going to pull it out or do something like gene therapy or DNA silencing and hope for the best. But at the end of the day, Janet, it's a 100 percent. Given that within maybe 15 or so years I'm going to start developing symptoms and there it is. Janet:                                05:47                   You were a very young man when you were brave enough to get tested. But I understand you also didn't share that information with very many people. Seth:                                  05:57                   Yeah. That's something I wish I did and I think the challenge was knowing that my mom was still alive and didn't want to put more on her plate. I didn't want her to suffer even more than she was. My Dad being a caregiver, not wanting to worry him, put an additional load onto him. And then having an older sister, I felt like she may feel the pressure to also get tested. So I actually only told a few friends and over time felt a little bit more comfortable telling more and more friends. But telling my family was very tough and it, it was challenging because I value family a lot and I, I was trying to do what's best for them and not having them worry about me, which again, it's, it's a difficult point because it's your family and you want, you want to be open with them, but at the same time you're like, , well how much do I share with them and how comfortable am I going to feel afterwards? Janet:                                07:02                   And that's kind of where I was at at the age of 20. And it actually took about three years. I really thought it took about two years when I had to like trace it back. And I'm like, wow. Actually took about three years until I told my Dad and my sister and then told my family. And I did this TED-X talk earlier this year in January. And it was like what I mentioned, there's coming out of this like genetic diseases closet where I was open about it and I just felt like I didn't have to hide that big secret. Have you ever been ever had that like big secret or like a secret that you're like, you just can't share with anyone or are you just not sure how people are going to react? Janet:                                07:38                   Well and it's also the fear that that gets built out of proportion about how people are gonna react. You spend so much time thinking about how they're going to react that sometimes it's nowhere near as bad as you imagined. Seth:                                  07:51                   No, absolutely. And that was it. I, I figured if I was to tell them, my Dad first off might try to talk me out of it and saying, "Oh why do you want to get tested so early?" And I knew this is something I wanted to do because similar to my Mom, I would maybe drop my phone or forget a conversation or something that my friend just told me and I would think, "is this Huntington's or is this just me being a 19, 20-year-old college student who just happens to do this?" And so it was just mentally draining that I didn't want to live with the unknown. I like to plan ahead. I'm definitely one of those planners. So I wanted to know what my future held. And again, like you said, Janet, it's something that, I didn't know how people react, but I also emphasize the importance of making this decision on your own because it is a very personal decision. Janet:                                08:49                   I can't imagine what it must have been like, not to tell. I'm sort of known as not being able to keep a secret in my family that I feel like people ought to know things. So I cannot imagine keeping a secret for two to three years about something like this. But what I'm really curious about is. So you actually have identified that you have a life-terminating disease, an illness that has no cure. Are you talking to medical professionals? Are you talking to other people who have the condition? Who do you confide in because that sou

Forced From Home Exhibition Immigration is on everyone’s mind right now. As with so many current issues, knowledge of how this global social problem impacts individuals is misunderstood or even unknown. Recently I had the opportunity to tour the national exhibition, Forced From Home, presented by Doctors Without Borders during its stop in Charlotte, North Carolina. I was graciously given a tour of the exhibition that included interactive activities designed to convey the challenges facing the more than 68.5 million people currently forced from their homes. I saw a re-creation of a refugee’s journey demonstrating the dangers, deprivations, and uncertainties faced by men, women, and children in the millions worldwide every day. My tour guides were Courtney Ridgway, Erin Ching, and Dr. George Record. As we walked between exhibit stations, they shared the purpose of the Forced From Home exhibition and answered all my questions. An audio podcast can’t fully reveal how moving this program was, so I hope you’ll visit the show notes for photos from the program and more information. DETAILS: The Forced From Home exhibition offers free, one-hour guided tours with experienced Doctors Without Borders aid workers. Visitors travel through an immersive exhibition featuring a virtual reality (VR) experience, a 360-degree video dome, and interactive activities designed to convey the challenges facing the more than 68.5 million people currently forced from their homes. Website Facebook Twitter Instagram

A wise man once said laughter is the shortest distance between two people. Well, there's no shortage of laughter in this episode with Jacob Weiss, who's the director of High-Wired communities and entertainment that gives back. Listen to the podcast and find out why laughter is the best medicine on Get Social Health.     Janet:                                00:00                   A wise man once said laughter is the shortest distance between two people. Well, there's no shortage of laughter in this episode with Jacob Weiss, who's the director of High-Wired communities and entertainment that gives back. Listen to the podcast and find out why laughter is the best medicine on Get Social Health. Announcer:                      00:21                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, health care practitioners, and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real-life examples of healthcare social media in action. Here is your host, Janet Kennedy. Janet:                                00:47                   Welcome to the Get Social Health podcast. Today I have somebody who is going to help me solve some personal problems and that is Dr. Jacob Weiss. Janet:                                00:56                   He is a researcher and a social entrepreneur and he's going to be speaking at the annual conference of the Mayo Clinic social media network that's coming up November 14th and 15th in Jacksonville Florida. His topic is how juggling taught me to engage my community for health and well-being. Well I have to tell you I'm having a lot of trouble juggling and also juggling and engaging my community. So this is going to be a very valuable session for me. Welcome to Get Social Health Jacob! Jacob:                                01:28                   Thanks thanks for having me. Janet:                                01:30                   I was flabbergasted when I saw that we were going to have a person with expertise in juggling at the annual conference of the Mayo Clinic social media network and I'm thrilled because I actually have a cousin who is a professional mime, clown, and she has awesome juggling skills. So that is amazing. Jacob:                                01:52                   Yeah it is. It's going to be a lot of fun for a lot of people don't realize the connections you can make and the AHA moments you get when you bring in something that's a different industry. But where there is a really positive connection that you can make, and building bridges across. Janet:                                02:08                   Absolutely. And I think some of this has to do with when you send people particularly to a conference or an event where they're expecting the same old same old. And you throw them for a loop. They've got to kind of think differently. Jacob:                                02:24                   One of the things I love about juggling is it's that physical getting up and moving it's visual it's it's not another PowerPoint slide for example and it and so if you're trying to convey a message or teach or share knowledge you can't just share the content you have to do in a way that keeps them awake. That makes them engage in a way that it's really sticky that they can remember back to it when they want to use it. So that's one of the powerful ways that we use juggling as part of sharing content and real knowledge as well. Janet:                                02:57                   All right wait a minute I'm very easily distracted as you'll probably discover in this podcast interview. However, I'm envisioning you being up there and juggling three to five balls and all this awesome stuff is going and your and you're imparting words of wisdom. Janet:                                03:11                   I gotta tell you I'm going to be totally focused on your juggling skills and I'm not going to be listening. Jacob:                                03:16                   Fair enough. And I will give you a preview that most of the time that there's talking. It's not at the same time as the juggling so that the juggling will make you can enjoy it and have fun with it and then we use the other parts following before and after to connect when there's a metaphor or sharing a story of what I've done with juggling and community and building healthy communities using both juggling and social media. So it's it's not the distracting part it's the get you focus then you can listen. Janet:                                03:51                   Well now folks know me as a social media early adopter and somebody who uses it probably to the point where they like Janet you need to take the day off. But I'm trying to put together my idea of social media and juggling. Well, the first thing of course is that's all social media is I am I am bouncing from one thing to another trying to keep all my content up in the air respond to things like there's a perfect metaphor for there. But what you're actually saying this is a physical metaphor as well. Jacob:                                04:22                   There's the metaphor of keeping the balls in the air. And one of the things I talk a lot about is you know it's a marathon not a sprint when you're learning to juggle. You don't drop a ball and give up in two minutes and say I can't do it. Same thing with social media. You're getting started on that whether it's a new career path or a new project with social media. You don't just try something and say Oh did it work. I'm quitting it. It's really that long-term goal and process which is the same as learning to juggle. So you've got those metaphors. But there's also a real physical mindset shift that you can make a connection to while you're actually physically learning to juggle. And so it's not just a conceptual metaphor but it's a physical experience that you can go through that that you can make connections to when you're working on those other areas of your life or work. Janet:                                05:19                   All right let me ask you something and maybe this is why I'm not very good at juggling and I can't get past five passes the ball is because I'm always thinking about the ball's going to land here the ball's going to land here and the ball's going to land here as often we do and work of I'm going to do this again to do this again this which means everything just becomes a blur. Am I doing juggling wrong? Jacob:                                05:41                   I would say you're doing juggling wrong a lot of ways if you can. One of the ways we teach for example when we're really teaching getting past the first couple of throws is to stand over a table or a desk and let those next. Those that you're trying to get to hit the ground right it lands on the table. Then you have infinite time to make the next throws after that's already landed on the ground. And it also helps you get past worrying about the drops and really focusing on that. So it's it's like with work when you're working on social media or any really any work or or project it's its focus on what you can be getting done now not worrying about the next drop that could happen and end. And then you get to that as it comes. And so it's juggling it really is almost like a yoga or meditation is that sense of flow. You have a feeling of when it clicks in. Janet:                                06:39                   I will say the other part of the metaphor that I really like that a lot of clients or big companies or even healthcare organizations have to grasp is that you're going to drop a ball and in social media, you're going to spell something wrong. You're going to have a link that didn't work that you've got to repost because when you think about the volume of what you're putting out and the speed at which you're putting it putting out if your social media is all 100 percent planned vetted reviewed edited and signed off on it's boring. You know that's like picking the ball up and then picking the ball up and then picking the ball up as opposed to ball hand, ball, hand, ball. Jacob:                                07:16                   Exactly along the lines of what you said in terms of that's boring people connect on social media. It's not a press release. Right. It's that you're connecting you're having real conversations with real people. And same thing when you watch juggling. I often when I teach other performers they're not watching the balls in the air they're watching you having fun with the juggling onstage and it's the same with social media. It's not just the announcement here announcement their content they're engaging with you and your personality and that has to shine through in a genuine way. Again it's the same thing if you're performing on stage five hundred people as if you're have five hundred dollars on social media that you're engaging with. It really just has to come from a genuine place from you not just what is the content that you're share. Janet:                                08:07                   You know I can talk about juggling forever but at some point people are going to wonder why are we bringing a juggler to this conference and actually you get some letters after your name and you have some established academic credibility to this work you're doing so tell us a little bit about your background and how you managed to bring this childhood love of something all the way through your academic career. Jacob:                                08:30                   Sure. Apart from being a juggler since I was about 10 years old I went to Princeton University for my undergraduate and I was focused on computer science engineering where in addition to

Marie Ennis-O'Connor is a social media consultant for healthcare and pharma. She visited the Get Social Health podcast to talk about her upcoming presentation for the Annual Meeting of the Mayo Clinic Social Media Network. Marie visited the Get Social Health podcast 3 years about as a "must follow" social media expert and that is still very true. Listen to the podcast here or drop in at the time stamps below.   Janet:                                00:00                   One of my go-to healthcare social media consultants is Marie Ennis O'Connor. She's a wonderful person who's been on the podcast before and is very savvy about how to craft, must read headlines and compelling content for social media and you know that's a challenge we face every day. Find out how she does it on Get Social Health, Announcer:                      00:22                   welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals, actively working in the field and provides real life examples of healthcare, social media in action. Here is your host, Janet Kennedy. Welcome to the Get Social Health podcast. Janet:                                00:50                   Yay. I'm excited to have a friend of mine back on the podcast, Marie Ennis-O'Connor was with me a couple of years ago and a lot has happened in social media marketing and the online healthcare world since then, so it's going to be exciting to catch up with her, but even more exciting is that I'm finally going to get to meet her in person because we are both going to be at the annual meeting of the Mayo Clinic Social Media Network. It's going to be taking place at the Jacksonville campus of Mayo Clinic in Florida on the 14th and 15th, and if you are relatively new to healthcare social media, you may want to think about joining the residency that takes place on the 13th the day before, so it's a great three day conference. You're going to meet some amazing people, not the least of whom is Marie O'Connor. Welcome to the podcast, Marie. Marie:                               01:41                   Thank you, Janet. I think I'll get you to do that introduction for me when I'm in Jacksonville, so that was very nice. Thank you. Janet:                                01:47                   I might get to because I was asked to be a moderator in one of the rooms, so if I'm near you, I might get to do your interview. However, to folks who may not be familiar with you or haven't had a chance to listen to your previous episode, let's catch up and let me tell a little bit about. Marie is a digital communications strategist and she is an internationally recognized keynote speaker. She's in Ireland, so it's not as far a jaunt from here, but she's going on her fall conference circuit, so by the time you get to the Mayo Clinic event in November, you're going to be well-packed and well traveled. Marie:                               02:27                   I imagine. You know, I have a suitcase that I keep packed all the time. When you travel like that, you do have to start getting very strategic about what you bring and yeah, so I've got it down to a fine art now. I did have a consultant that used to work with me when I was in the shopping center industry and she always packed 100 percent black everything, so she never had to worry about anything matching. It was just all black, I think a little depressing, but that certainly does simplify your travel. Yeah, no, that's good. And I will, let's not get too much into, into fashion, but I just wear dresses because I just find they roll up nicely and they just always look fine. So that's just my advice. Janet:                                03:17                   Marie, what have you been up to since we last spoke? Marie:                               03:21                   I am more than enough with social media than I ever been even the last time we spoke and I love to be able to say that. It's just, we're learning all the time where we're doing new things, we're trying new things, working with new clients. So I'm just more in love with social media than ever. I'm doing a lot of travel, which is wonderful. I get to meet some new people and I'm still loving this. Introducing people to the real power of social media. What's interesting, Janet, I think even. I'm trying to remember back to what we talked about before. I'm still quite amazed that even these several years later we're still having to almost go back to basic principles and explain what is social media, what is digital marketing and there's still a lot of misconceptions around that. So I like to put people straight and I like to. Marie:                               04:10                   I guess my background is in public relations, so I always go back to a real grounding in real communications and you introduced me as a digital marketing communications. I can't even remember what I said I was and it's because I still think sometimes social media has got this reputation of well we just put up a few tweets or we'll just put up a Facebook page and they're so, so much more to us. So I guess probably one of the challenges that I still face is really getting that across to people is that there is so much more about doing social media or using social media, it's about how to do it strategically. So that's been my life's work and that's what I've been doing for the last couple of years or however long it is since I spoke to you and I'm still finding it fascinating. Marie:                               04:53                   Well I think what's interesting about your perspective as well is that your in Ireland, so you're kind of halfway between the US and Europe and you have clients across all those continents, correct? Speaker 3:                        05:06                   That's correct. And the wonderful thing is people don't actually know I'm in Ireland. I always have to start off when people invite me or asked me to go on a call, I always have to start off with, well, you know, I am in Ireland. They go, no, I didn't know that. I thought you were in the US or I thought you were in Australia or I thought you were wherever. But I think that's the amazing thing is that you can be anywhere in the world and you can give that one world class service. Janet:                                05:27                   Oh absolutely. And it also means that you have to really learn how social media is being used in a lot of different cultural and more importantly governmental situation. So where in the US, you know, we're just starting to feel the GDPR type of situation. You were deep in it this year over in Europe. Janet:                                05:49                   Yeah. It almost became a Y2K thing. People got very worried about it. But it's basic good governance. If you sign up to a newsletter, if you take somebody email, you follow these steps that people can opt out very easy. I mean it's good practice. So I'm delighted to see GDPR come in, but you know, yeah, I think probably there's a little bit more email spamming coming from the US, but we're all going to start leveling off with that. I think that GDPR is something that's incredibly important and I think we are going to see that as well coming through across the world. Continental. Janet:                                06:27                   Absolutely. It's just the best practice to follow it regardless of whether you're legally obligated to. Marie:                               06:35                   Absolutely, absolutely. I would have always practiced it anyway, even before GDPR came in. So it was great to see GDPR coming in. I'm still amazed at the amount of people who didn't comply with this, even though there's a lot of fines and very high. Fine. So we'll see. We'll have to see what's going to happen with that. Janet:                                06:51                   Now, what type of clients are you working with? Are they health care systems? Are they pharma companies? Are they health tech companies, health tech companies and pharmaceutical industry? Marie:                               07:01                   So a lot of healthcare startups, and the pharmaceutical industry, the pharmaceutical industry. I'm working more or less in social media marketing and more in terms of patient engagement. So I wear two hats, which I really, really enjoy as well. Well, you know, you're on the board of the patient empowerment foundation and I'm not sure what that is. So tell me a little bit about that. So the patient empowerment foundation is really about empowering patients. It's about giving patients a voice. Let's say there's a conference, we have sessions at the conference where patients can network niche but can really get access to the information that they need, so it's about showing patients that they have this role to play and helping them to get the most out of a conference or get the most out of them out of the healthcare system. So it depends. It depends on what patients need. If it's an individual patients or patient groups and that's the kind of work that we're doing. Janet:                                07:59                   Are you finding that conferences are more aware of the need to say underwrite scholarships for patients to be able to attend their conferences? Marie:                               08:08                   You know, yes, but I find it very interesting that there's still so many conferences that aren't, but what I find fascinating is that they're almost being shamed into providing those scholarships. There's the patients included accreditation which conferences can get if they provide that scholarship, if they make it easy for patients to attend on. W

How does the internet impact healthcare? Susannah Fox, former CTO of the HHS and the Obama White House joins Janet Kennedy on the Get Social Health podcast to discuss research, social media, and online healthcare communities. Listen to the podcast or drop in at the time stamps below. Interview Transcript: Janet:                                00:00 Thank you for listening to the Get Social Health podcast, a production of the healthcare marketing network. The HMN is a community of freelance healthcare and medical writers ready to support your business or practice. You can find them@healthcaremarketingnetwork.com. On the podcast today, I had the honor of speaking with Susannah Fox, one of healthcare's leaders in the field of data research and understanding the implications of how the Internet has changed our ability to communicate and connect. She is a fascinating person and I know you'll enjoy our conversation on Get Social Health. Announcer:                      00:36                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy. Janet:                                01:03                   Today on Get Social Health I have the honor of speaking to somebody that I may stumble a little bit when I ask questions because I'm a true fangirl. Susannah Fox is really a legend to those of us in the digital health and marketing world because she's the person that validates so much of the information that we use in marketing and communications in the healthcare space. Welcome to the Get Social Health podcast, Susannah. Susannah:                        01:28                   Thank you. I'm thrilled to be here. Janet:                                01:30                   Well, I want to give people an opportunity to learn a little more about you, but I will say you're one of the few guests that I could literally say and she needs no introduction, so let's lay some groundwork here. The reason I'm talking to Susannah, is that she's actually going to be one of the keynote speakers at the Mayo Clinic Social Media Network annual conference coming up November 14th and 15th at the main campus in Jacksonville, Florida, and so I'm honored to be able to talk to her today and I have so many questions. So first we're going to lay some groundwork and we're going to talk a little bit about Susannah's background leading up to where she is today. Now as I came into healthcare, Susannah Fox, this name was often mentioned regarding the actual data of healthcare and how people were interacting with social media and the Internet. Her work was one of my go-to places as I got up to speed on how social media and marketing and healthcare and the Internet all came together at that time. You were with the Robert Wood Johnson Foundation, but I'm sure you actually had a job before then. So. what is your real backstory? Susannah:                        02:43                   Well, my backstory starts way back in the nineties when I like to say dinosaurs roamed the Internet and we were just starting to understand that the Internet was going to have a big impact on all sectors of society, but the nineties, a lot of people really focused on the business.com aspect and I was at that time I worked for a startup company. I helped start the website for US News and World Report magazine. I was building websites and then got pulled towards research and had the opportunity to help start the Pew Internet project, which is a part of the Pew Research Center here in Washington DC. What I loved about the Pew Charitable Trust charge to us, they said, we want data about the social impact of the Internet. A lot of people are looking at the business impact. We want to find out how is the internet affecting Americans lives in terms of their family's education, government and health, and healthcare. Janet:                                03:47                   Well, I have to say that a very different conversation would've been held a couple of years ago and we can kind of touch base with some of the dramatic changes that have happened online since the 2016 election, but prior to then it really was a very happy and healthy place to be. People were using social to be social and new and fascinating things were happening in the healthcare space with people connecting. Is that what you found? Pre-2016? Susannah:                        04:16                   Yeah and I still see it today, so I will confess to being like my dad, who his therapist once told him, you are in the rational optimist, you are irrationally optimistic about the world and I tend to share that trait in that I still see reasons for hope even now, especially in healthcare because of the Internet, the power to connect people with the information data and tools that they need to solve problems. Speaker 1:                        04:47                   Absolutely, and if anything, I think it's health care that shows the greatest opportunity for using social media in a proactive way and when I hear people dis my favorite platform, which is Twitter, I'm like, you have no idea what amazing things are happening in Twitter, particularly in healthcare, so don't throw the baby out with the bath water. Let's figure out how to make this work. Susannah:                        05:11                   I agree. Sometimes I describe Twitter while I described certain hashtags on Twitter as campfires that if you need it, you can go to a certain Hashtag like you would gather around the campfire and find other people like you exchange stories sort of strengthen your spirit for going back out into the dark. You know, it's not for everybody, but when you find a campfire that works for you, then it really is special. It really is helpful. Janet:                                05:43                   I can't describe it better myself. That is such a wonderful analogy and I am already visualizing how I'm going to make a cool meme out of this. So you were working with Pew and you were part of a team that developed all of the fascinating insights. Things that we hadn't really realized before how teens were using social media, how young adults were very digitally savvy and they literally would go to the Internet to ask their healthcare questions. Whereas a generation before we always went to our parents. Susannah:                        06:16                   That's right. Or if we went and books or we only relied on clinicians for advice. What we saw when we were doing our initial research, this is back in the year 2000, 2001. We were looking at how people were using the Internet to gather information. You know, this was really pre-iPhone. It was pre-Google. People were stitching together research and finding ways not only to find information but to find each other. And that was one of the early indicators to me that social media was going to be huge because people were finding a way to be social when it was just bulletin boards, you know, shout out to the old school people who number would a BBS is or Listservs, you know, when it was just email communities. Susannah:                        07:14                   What we saw even back then is that people are really thirsty for connection and in healthcare. People were starting to trade information and data and I should hasten to say that back then and today when you ask people when you need a diagnosis or you're formulating a treatment plan, who do you turn to for advice? And it's still the case that the vast majority of American adults turn to a clinician, but they will get a second opinion from family and friends. And from what I like to call Dr. Google, Janet:                                07:54                   Well, you're maybe the only person who likes to call it Dr. Google. So and that's a big pushback from clinicians is they, they really get frustrated when inaccurate information is brought to them. Or a very broad range of information is they feel like they're not being very efficient in having to really allay people's concerns about information they don't like in the first place. So you know, my response to that is then you need to be creating the information that you want your patients to be seeing. That we need clinicians to step up and be producing content at a much higher rate. Susannah:                        08:31                   Yeah. You know, I have a lot of empathy for people who have not yet gathered around one of those campfires had described. I have empathy for people who were raised and trained in a world where we didn't have access to the resources of the Internet and so one of the reasons why I'm so passionate about research and playing this role of ambassador between the research world and the clinical world and other places, is that we need to convince people with data. We can tell stories, but we also need to have data to show this is the majority of American adults and it's reaching now into populations that a lot of clinicians might not expect. It's reaching into older adult populations. It's reaching into people who are living in lower income households. People with a high school education are now likely to have a smartphone. I'm more often than they did five or 10 years ago, certainly, and so you know, I have empathy for people who feel like the landscape is shifting under their feet. Susannah:                        09:43                   Oh, I agree totally. Although I will say, and this is going to date me a little bit when I was pregnant with my one and only son, I had the opportunity to potentially be the first person to use the labor delivery something somet

Meet Michael Sengbusch Since leaving Influence Health in 2017, Michael Sengbusch joined ATDC as the CTO-in-Residence. ATDC is Georgia's oldest, largest, and most influential startup incubator. At ATDC he mentors and advises over 40 startups in Atlanta. Michael continues to be actively involved in both healthcare and marketing technology. He will be speaking at Healthbox Studio in October on healthcare marketing topics.   More info on ATDC: http://atdc.org ATDC Healthcare Technology Vertical: Georgia Tech to Launch Health Technology Initiative at the Advanced Technology Development Center. Healthbox Studio Healthbox Studio Report Twitter handle: @msengbusch1  On the Get Social Health podcast, Janet interviews Michael Sengbusch about Facebook and marketing for healthcare systems. Give a listen or review the transcript notes below: Janet: 00:00 Podcasting is a fun, yet sometimes time-consuming passion. As some of you may have noticed, I took a little hiatus from podcasting so I could focus on the launch of the Healthcare Marketing Network, a company that brings together healthcare companies with healthcare writers. I'll tell you more about the Healthcare Marketing Network at the end of the podcast. However, in taking my little leave of absence, I had previously recorded a few interviews that hadn't been published. Today's conversation is with Michael Sengbusch, a healthcare technology and marketing expert. In my intro, you'll hear that I mentioned where he was working at the time of the interview, but I've got a little update on Michael's career since we recorded this interview. Janet: 00:42 Michael Sengbusch, left Influence Health in 2017 and joined the advanced technology development center as their CTO in residence. ATDC is Georgia's oldest, largest and most influential startup incubator. Hosted by Georgia Tech at ATDC, Michael mentors and advises over 40 startups in Atlanta. He continues to be actively involved in both healthcare and marketing technology and will be speaking at Healthbox studio in October on healthcare marketing topics. Janet: 01:14 Now let's jump into our conversation, a Facebook, so needed for marketing yet such a challenge to manage for healthcare. Today I'm speaking with healthcare marketing and technology expert, Michael Sengbusch about Facebook tracking and CRM on Get Social Health. Announcer: 01:37 Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals, actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy on Get Social Health. Janet: 02:05 I've had the opportunity to talk to a lot of different people in my field, but occasionally I run across someone who we should have crossed paths ages ago. I don't know how I haven't met or talked to Michael Sengbusch. Yes, but the day is my day. I'm really excited about it. Michael is currently serving as the Influence Health senior VP and GM of Consumer Experience. Michael has established credibility through the healthcare industry as a thought leader in digital healthcare marketing and with expertise in leveraging Facebook as a successful patient acquisition channel. I know my listeners are going to be really excited about how that works. Welcome to Get Social Health, Michael. Michael: 02:48 Thanks for having me today. Janet: 02:49 All right. I want to jump right to how does Facebook bring patients in, but I think we need to set a few background stories here to get people up. Speed. So first off, do you mind sharing a little bit about your background and how you got into healthcare and social media? Michael: 03:07 That's actually kind of an interesting story. So my background is in technology and in computer science, so I've been kind of trained and spent the first half of my career as a software developer as an engineer and it kind of took that path and got more into product development and then sales and startups. And then I was at a startup. I was one of the early members of a company called bright whistle and we were doing digital marketing technology and we were exploring different spaces and we kind of stumbled upon a gap in a healthcare marketing technologies, particularly in the provider space with hospitals and so I don't think when we started that we decided to go attack healthcare marketing for healthcare providers, but we did kind of stumble into that based on some connections that we hadn't realized that it was an underserved area. Michael: 03:56 There was a lot of opportunity there and we decided to just go heads down and work on digital marketing for healthcare providers and health systems across the country and that's what was created as Bright Whistle which was acquired about two and a half years ago by Influence Health and I've stuck around here for the last couple of years and helped integrate those platforms together and it's really kind of a grown from there. Janet: 04:20 No, that's exciting. You actually survived an acquisition and ended up coming out on top, so congratulations to you. Tell me a little bit about the award that you won in 2014 at Bright Whistle. Michael: 04:32 One of the early things that we were doing was experimenting with Social Media Marketing and if you go back to 2000, 10, 2011, social media was new and social media marketing was extremely new and in healthcare it was bleeding edge if not unheard of. And so while we were doing a lot of search marketing and social marketing for, for health systems and hospitals, we were bringing that to the table and one of the reasons why we were able to do that kind of so early was we were one of the early companies that was building software and technology on top of the Facebook marketing API and when we worked with Facebook early on, the different marketing partners that they accepted in program all really had to have something unique and different about them. So you know, what were you going to bring to the table? Now some of these companies brought scale. They brought big advertisers, big dollars. We brought healthcare and that was just kind of a weird. It was, it was kind of weird for Facebook at the time. What are you guys doing in healthcare? That seems a little, it seems odd. Michael: 05:34 but that seems interesting because we know it's important. So we didn't represent a huge market share as it relates to marketing. We didn't drive a whole ton of advertising, but we brought a really interesting story to the table. So working really closely with Facebook to do marketing a technology. We participated in the 2014 Facebook innovation competition and that brings all the Facebook marketing partners together. People submit different case studies and applications from all across the globe. So there's thousands of Facebook marketing partners, and we were awarded the winner and in our category and we were able to win that for some of the really interesting marketing group doing it Facebook, but more importantly, not just the marketing, but what we were doing with the data and how we were actually measuring the results of those marketing campaigns. So, we won that by actually using Facebook targeting Facebook marketing and then tying that to a healthcare CRM to figure out attribution and figure out what type of marketing campaigns actually generated results in a clinical setting. Janet: 06:42 So that's really, really exciting. Now, is that still an operation? Is that part of the Influence Health program? Michael: 06:48 Yeah, that was actually the beginning stages of what we would call kind of our next generation CRM solution and CRM and healthcare has been something that's been changing a lot over the last few years and one of the key components to any kind of CRM system is being able to use that not just for the outbound targeting but also that consumer experience which happens after somebody responded to a marketing campaign. So how do I learn more about that person, how do I personalize that information and then how do I use the data that I have in the CRM system, clinical information, claims information, diagnosis information in order to learn more about how that person made the healthcare decision that they made and then which channels can I better communicate to them through that? Michael: 07:34 So that was kind of the early stages of what we call a healthcare CRM and that makes up a big portion of what we do here at Influence Health. Janet: 07:42 Well, I do want to ask you a question about CRM and crossover. So when you talk about CRM, you literally are talking about patient information, not a marketing database or the email lists that's used by the marketing team to send out the newsletter for the hospital. Michael: 08:00 Yeah, I think those start to bleed together. So in a sense, depending on who you're talking about, sometimes it could be two different things and sometimes it is the same thing and that's kind of where I think you've seen marketing bleed into what you would call, you know, either CRM or into data to analytics to population health, customer service, patient satisfaction. All those things start to come together. The more you centralize that data source. Janet: 08:27 Although I am confused or concerned at what point does a patient's HIPAA information become a problem? I know you're obviously not looking at individual patient records and you don't have access at that level, but at what point is it reasonable to assume that if I am a patient of a particular hospital and you have this information about me that you have tied together, the fact that I like your Facebook page and I click on these links, is that what you're saying you're able to do? Michael: 08:59 It's a little bit more decoupled than that. So we do deal with a clinical information and patient records

I'm happy to be back behind the microphone after a hiatus to focus on building the Healthcare Marketing Network with my business partner Carol Bush. We'll be covering what's happening with our company in an upcoming episode. Today's conversation is with Jim Higgins, the CEO of Solutionreach. We were introduced by Lea Chatham,  a healthcare writer and editor and the Director of Content Marketing for Solutionreach. Knowing my interested in healthcare communications, Lea suggested I speak with Jim about their platform and the need physicians practices have for intelligent patient communications. Listen to the episode: 00:56 Intro: Meet Jim Higgins, CEO of Solutionreach 01:41 Solutionreach launched 17 years 02:21 About the Solutionreach platform 05:18 A patient portal: yes or no? 06:51 Comparative experience with other platforms 11:01 Managing your life as a healthcare worker 14:13 Keeping up with patient communication 17:32 Is this a clinical tool or marketing tool? 20:26 The need for content curating for healthcare practices 21:57 Describing the platform layout 25:01 Patient portal usage rates 26:56 Add-on or independent platform? 29:57 Millennial communications 33:36 Patient feedback on practices 36:01 Applying it to Facebook 39:46 Encouraging 43:45 Social Media Tip, Todd Eury, The Pharmacy Podcast. Twitter & the power of the Hashtag 44:39 Closing message: Healthcare Marketing Network - connecting healthcare and medical writers to companies and practices. Connect with Solutionreach Website Twitter Facebook LinkedIn company page  

David Harlow, Lawyer, Social Media Guru, and Blogger has been a guest on the Get Social Health podcast before. Guess what? I have more questions! As a member of the Mayo Clinic Social Media Network's External Advisory Board, David graciously agreed to come back on the podcast and talk about what has changed in social media and healthcare in the past 2 1/2 years. Listen to the podcast or drop in at the time stamps below. 00:54  Intro 01:33  A Lawyer?! 04:29  Comprehending the tech 06:35  Covering the bases 07:29  Active with start-ups 07:51  You and the Mayo 08:37  Optional involvement in social media 10:31  Why the holdouts? 11:50  How do you get involved 12:56  Mayo Clinic annual conference 16:27  Personal life and HR impact 19:01  Professionalism is 24/7 22:05  Patient privacy in a crisis 26:15  When family isn't your family 28:18  Planned vs spontaneous content 29:35  Authenticity with patients 32:15  Concerning email lists in marketing 36:55  End 38:06  Social Media Tip from Dr. Mike Sevilla 39:10  Closing: Healthcare Writers Network is available to help you! Below are links to a number of David's blogs, projects and social media activity: Two posts about the marketing ramificationshttps://twitter.com/healthblawg of the HIPAA/HITECH Omnibus Rule: "HIPAA Clarity: Do You Have to Sue HHS to Get It?" "HIPAA Marketing Rule Guidance: Better Than Nothing" Health Wonk Review Twitter LinkedIn

Content creation is critical to an effective hospital marketing plan. On the Get Social Health podcast, I chat with Jeff Calaway about the creation of a newsroom-style PR department for Cook Children's Hospital. By operating as a newsroom, the hospital communications team was positioned to take advantage of health-related stories in the news. To find out how listen to the podcast or drop in at the time stamps below.   00:51  Intro 01:18  About Jeff 04:09  Mobility & flexibility 07:35  Telling personal stories 10:07  Involving your staff 13:06  Evergreen vs live news 15:34  "Newsjacking?" 17:08  Timely posting on current events 20:12  Spontaneous vs oversight 24:20  Physicians who produce social content 27:19  Accuracy vs accessibility 28:32  End 29:18  Social Media Tip Mari Smith 30:01  Closing   Connect with Jeff: Jeff Calaway, Senior Content Specialist: Twitter: https://twitter.com/JeffCalaway LinkedIn: https://www.linkedin.com/in/jeff-calaway-36097a74/   The Cook Children's Marketing & PR Team Justin Smith, Medical Advisor for Digital Health/Primary Care Innovator, Twitter: @TheDocSmitty Wini King, AVP, Public Relations, Twitter: @PRKing1210 Missy Staben, Manager of Digital Communications, @Missy Staben Kim Brown, Media Relations Specialist, Twitter: @KimatCook Abigail Hodgson, Social Media Specialist, Twitter: flabigaill The story doing well in India: http://www.checkupnewsroom.com/5-days-of-fever-now-what-should-i-do/ India is their third biggest country in audience readership behind U.S. and U.K. The story now has more than 10k views since it was published in June 2015. It has more than 140,000 total views. Our Selena Gomez Trilogy: 7 Questions Answered about a Kidney Transplant Surgery http://www.checkupnewsroom.com/7-questions-answered-about-a-kidney-transplant-surgery/ 8 facts about lupus http://www.checkupnewsroom.com/8-facts-about-lupus/ 13 Reasons Why You Should Be Concerned Your Child May Attempt Suicide http://www.checkupnewsroom.com/13-reasons-why-you-should-be-concerned-your-child-may-attempt-suicide/

They say that we learn by our mistakes but wouldn't we rather learn by other's mistakes? Jess Columbo of MedEd Digital joins the podcast to share her tips on "How NOT to launch the biggest social campaign of your career: Lessons from the OHSU Knight Cancer Institute $1 Billion Challenge." That's also the topic of her presentation at the Annual Conference of the Mayo Clinic Social Media Network. The Annual Conference will be held on the Mayo campus in Scottsdale, Arizona on December 11-12, 2017. Jess brings more than a decade of experience developing award-winning digital media strategies for clients in regulated industries. She holds a Masters in Digital Journalism and teaches part-time at Portland State University's Center for Executive and Professional Education. Listen to the podcast or drop in at the time stamps below: 00:56 Intro 02:21 About Jess 05:02 Why go it alone? 05:58 Médecins Sans Social Media 06:51 Are they trying to social? 07:54 How Jess became a keynote 09:12 Dan Hinman shout out 10:12 How not to launch... 12:22 Bringing them up to speed 13:53 About those haters... 14:35 Apologizing on social media 16:10 "Fighter," a misnomer 17:55 Support and investment 18:30 What did work? 19:46 Watchdogs 21:20 Work at Meded Digital 23:01 Balancing sales with communication 25:27 Updating outmoded professionals 27:09 Pharma and social media 28:32 Ignite movement 32:01 Mayo Clinic Social Media Network Annual Conference 34:36 Changing mindsets regarding social media 36:06 End 36:31 Social Media Tip: Darla Brown 37:30 Closing Find Jess Twitter LinkedIn MedEdDigital   Jess's Ignite Talk More about the Mayo Clinic Social Media Annual Conference: Join us for two days packed with four inspirational keynotes, six compelling case studies and presentations, three expert consultation sessions, and an evening taco reception complete with mariachi band! You don't need to belong to the Mayo Clinic Social Media Network to attend. Your registration includes a full year membership in the Network. We’re capping attendance at 125 so you'll have plenty of opportunities to contribute, interact, and connect with your peers. You’ll leave energized with more knowledge and enthusiasm to tackle, analyze, and solve the biggest social media problems you face today. You may want to join us on December 13 for our Social Media Residency, too!

Mari Smith - "The Queen of Facebook" Out of all the social media platforms utilized today, Facebook ranks at the top with over 70% of online adults engaging on the platform.  My guest on the Get Social Health podcast is the "Queen of Facebook", Mari Smith who will be the keynote speaker at the Mayo Clinic Social Media Network Annual Conference. She will be presenting a keynote titled "Facebook Success Strategies: Proven Ways To Increase Your Reach, Engagement & Results." The Annual Conference is being held December 11th & 12th at the Mayo Clinic campus in Scottsdale, Arizona. Click this link for more information and to register.  Listen to our conversation or drop in at the timestamps below: 01:00  Introduction 02:52  When Mari met Facebook 04:29  Mastery of changing media 06:23  Does Facebook tell us what we're interested in? 08:51  Your experience vs everyone else's 10:58  Break free from apps 11:42  Being careful in Facebook 15:36  Disclaimers in Facebook marketing 17:16  Facebook national tour 19:45  Full Facebook marketing potential 21:41  The importance of local to SEO 25:20  Facebook live vs uploading - which is better? 28:29  Blue checkmarks vs gray check marks 30:36  Meet Mari Smith at the Social Media Network Annual Conference 31:51  End 32:32  Social Media Tip from David Harlow (David is also speaking at the MCSMN Annual Conference) 33:56  Closing Find Mari Smith in social media Facebook Twitter Instagram Pinterest LinkedIn Link to Mari's upcoming course combo: Facebook Live Video Success Secrets + FAST (Facebook Ads Strategy Training) How to review your Facebook app privacy settings Additional recommended resources Mari rounded up for you as related to our discussion: Facebook Video Engagement: What We Learned From Analyzing 100 Million Videos Introducing Watch, a New Platform For Shows On Facebook How Facebook’s News Feed Algorithm Works (and What’s Coming Next) Facebook Ad Custom Audiences: Everything You Need To Know – 2017 UPDATE  

Peter Shankman's mind can do a four-minute mile, and he likes it that way.  He has been the keynote speaker for start-ups and Fortune 100s alike in over two dozen countries.  He hosts the "Faster Than Normal" podcast where he discusses the positive values of ADD and ADHD.  Peter is also the author of four books, with a fifth dropping in October!  Join me today as I discuss the power of ADHD with Peter, on Get Social Health. Listen to the conversation or drop in at the time stamps below: 02:12  Introduction 02:42  Peter's getting started story 06:10  ADHD and your podcast 06:44  When did you know you had ADHD? 08:20  The pros of ADHD 09:50  How ADHD helps you at work 10:41  Daily structure 12:02  Managing ADHD 14:12  Fidget devices 14:56  Physiology and ADHD management 15:46  Reactions to ADHD talk 16:46  Future of the podcast 17:55  Forwarding questions to medical experts 18:48  Enabling conversations 19:41  E-patient communities and you 20:43  Having open conversations 21:30  When did you go public with your ADHD? 21:59  Getting kids comfortable managing ADHD 22:41  About the book... 23:31  End 23:49  SMT 00:00  Closing   Peter's Contact Information Website YouTube Speaker's Reel Twitter LinkedIn  

Nightingale Apps - Simplifying a nurses workload Today on Get Social Health I have a quintuple threat:  Tiffany Kelley.  She's a nurse, a Ph.D., an entrepreneur, and CEO and founder of Nightingale Apps.  She's a leader in nursing innovation of mobile applications.  Join us as we discuss the career experiences and the development of "Know My Patient®" on Get Social Health.   Join our conversation or drop in at the time stamps below: 01:02  Introduction 02:18  Kelley's healthcare career 08:04  You actually write?  By hand? 10:49  Paper beats device 11:44  Tiffany's epiphany 17:16  The devil is in the details 19:09  How does a nurse build an app? 21:07  Fitting odd notes into existing systems 23:35  Which doodad would work? 25:10  Who would use this? 26:03  Long term care facilities 26:55  When will it launch? 27:37  "Rogers diffusion of innovation" 30:00  Exciting first steps 30:54  End 31:29  Tony Guerra SMT 32:02  Closing   Nightingale Apps website Facebook Twitter: @nightingaleapps Instagram: @nightingaleapps     Twitter: @Tiffany_Kelley Linkedin Facebook

Innovation to drive results - in 48 hours Joining me on the Get Social Health podcast is my friend and colleague, K. Melissa Kennedy. Melissa and I worked together on the Triangle Interactive Marketing Association and Startup Weekend.  We have a lively and educational conversation about bringing an innovation mindset and experience to healthcare through 48 Innovate. K. Melissa Kennedy parlayed many years of experience working for and building successful companies into a unique process for harnessing hidden assets inside organizations and turning them into big-idea-generating, $1-billion-revenue-producing resources. (Spoiler alert: It’s the people.) She’s an internationally acclaimed expert, happy to share the not-so-secret actions that have led to impressive outcomes for Fortune 100 corporations, start-up companies, and entrepreneurs. Melissa’s first book The Innovation Revolution: Discover the Genius Hiding in Plain Sight published in March 2017. It’s the essential guide for 21st-century leaders to deliver rapid results within the enterprise through INTRApreneurship – entrepreneurship on the inside. Listen to our conversation or drop in at the time stamps below: 01:00  Introduction 01:38  Tell me about yourself 01:58  Why write a book? 02:30  Journey to now 04:09  Startup philosophy for a multinational 05:23  What departments had you worked with? 06:21  How is this not just another 48 hours? 08:52  Tracking early programs 09:23  C-Suite or sour? 11:23  Breaking down peer barriers 14:07  Cultivating creativity 16:37  How many projects? 19:09  Skin in the game 21:55  Judges 23:01  Let's talk about healthcare 24:06  Risk required 26:16  Leading in change 28:16  CIO's in all seriousness 30:47  Exercise your innovation 32:38  Frequency of innovation indoctrination 34:47  Blueprint to innovate 37:44  Oh right, your book! 38:41  End 39:24  Wendy Sue Swanson SMT 40:34  Closing   Contact K. Melissa Kennedy Company Name: 48 Innovate Phone Number: 919-348-2207 Email Address: mail@48innovate.com Twitter LinkedIn Company Website Book Website