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Susannah Fox – Healthcare and Social Media

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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 something or where basically it was all done in one room because back in those days it was, you know, you were here for a while and they rolled into the delivery room and so they were just inventing this alternative kind of space and it was the oldest physician in the practice who was over 70 who really was hoping to be the first person to use that room. So I will defend the mature generation and say it isn't just generational regarding whether they're willing to adapt to new things. Because I see, for instance, in the entrepreneurial world, the average entrepreneur is over the age of 40, so we kind of get in our heads that it's all the millennial's in the digital natives, but I see all kinds of people in a more mature segment trying to learn and catch up.

Susannah: 10:43 I totally agree. Thank you for saying that. And what I've also heard in my fieldwork and talking to people who are living with life-changing diagnosis and rare conditions, is that the specialists that they go to value when patients have done a lot of homework, they value when patients come and say, well, I'm part of a worldwide network of people with this condition and we've all pooled our data. Here's what we believe, you know, can we investigate this? And so, you know, as we think about the spectrum of who is open to the Internet's impact on health and healthcare, we absolutely can't just talk about age and generational differences. You know, we can talk about specialty differences. You know, how our pediatricians different, for example, from geriatricians. And you know, one thing that I love is I'm really interested in the quality improvement movement as well and when I go to those meetings there so often dominated by pediatricians and I find that so fascinating that pediatricians seem to be really open to the possibility of change in their industry. And it actually dovetails really well with their audience being the moms and dads who are searching online for information that's a team that surrounds a child that's really ready to use all the information available to help that stay healthy.

Janet: 12:12 Oh. And I love what's happening over in the American Academy of Pediatrics. They are embracing social media. You can become a tweety attrition and help them share stories. And when I interviewed the president of the AAP a few years ago, one of the things that was said is that had pediatricians been online and active in social media in numbers that many years ago when the whole discussion of vaccines and autism came up, if they had been able to end moss respond authoritatively in social media, it might not have turned into something. But unfortunately, by being more passive about it, they let other people take their voice and really change healthcare for pediatricians. And so I think that part of their response and being open-minded is we can't afford not to be because we can see the devastation that can happen when pupil spread incorrect information.

Susannah: 13:09 Yeah, I love that story and think that it is a story that could be told across multiple disciplines. There are going to be other moments when there is misinformation when there is misunderstanding and so it really makes sense for clinicians to be ready and to have, you know, their field marshals out there ready to go on social media.

Speaker 1: 13:34 Absolutely. Because the other thing with knowledge comes wisdom and comes confidence and indeed comes hope because if nobody's responding with information that's accurate and correct, then people worry. So if you are there with them, don't worry. Here's what happens. You know, if you can imagine when we had to healthcare providers come to the United States with a confirmed exposure to a bola and how literally the whole country was freaking out. That's a time when we needed healthcare people. And many of them did step up and say, you don't have to worry. Don't panic.

Susannah: 14:13 That's right.

Janet: 14:14 Well, I think that's absolutely fascinating work now. You also then worked for the US Department of Health and Human Services. So tell me what the transition was like and what kind of projects you worked on when you were a government employee.

Susannah: 14:27 I should say that when I left the Pew Research Center it was because I felt that I couldn't write another research paper about the internet and healthcare. I felt like I. I had some answers and I wanted to try and get in the trenches a little bit and try to change things based on all the observational work and data collection that I'd done. And so first I went to the Robert Wood Johnson Foundation to work because of their entrepreneur in residence. While I was there, I got a call from Brian Civic and Todd Park. Todd was the first CTO at the US Department of Health and Human Services. He was appointed by President Obama to create that office and then had moved up to become the CTO of the White House. And Brian took the spot as HHS CTO and they called and said, we think that you're the third CTO, we think that you should be the next one, and I, I have to tell you, I said, no, no, no, no, you don't understand.

Susannah: 15:29 I'm really enjoying my work here at the foundation. Then they started describing what the portfolio does. So the portfolio of the office of the chief technology officer to HHS oversees the open house data initiative. Well, I love that initiative. That's really what I believe is going to unlock well being for a lot of people and that is that data should flow to where it needs to be, whether we're talking about national data in the realm of public health, whether we're talking about improving it at the practice level or whether you're going to give access to an individual. So they caught my attention to that and then the rest of the portfolio is so much about empowering HHS employees, whether they work at NIH or CDC or FDA or Indian health services to try new things, to act like they are entrepreneurs. Well, I couldn't resist the opportunity because I really do believe that a lot of the spirit of the Internet, which some people associate with silicon valley, but I really think now is is everywhere.

Susannah: 16:45 This idea that we should be experimented with, new ways to deliver care. I think that shouldn't be limited to startup companies and it was amazing to serve at HHS and to talk with people about how to unlock data, how to unlock the information that the federal government holds to better serve the American people. Now I should pause and say the other part of the role is to serve the leadership, to serve the secretary and the leadership at each of the operating divisions. As sort of a lookout and I sort of think about the role of the chief technology officer as someone who's up in the crow's nest of a ship, scanning the horizon for opportunities and for hazards in the technology landscape. And so that, for example, an opportunity that I saw in the landscape and then I brought to the leadership was this new movement towards not only innovation in software and data but in hardware like medical devices and assistive devices for people living with a disability.

Janet: 17:57 Oh, okay. Fascinating. Well, did you see the cybersecurity issues on the horizon?

Susannah: 18:03 So, yes. And cybersecurity was something that we discussed quite a bit and that was particularly in terms of how to handle, for example, data security around the blue button initiative. The Centers for Medicare Medicaid services created a way for Medicare beneficiaries to be able to download a simple text file of their claims data and the veteran's administration had done it first. The VA had created the blue button download for veterans. It had been really popular and so cms rolled out a version for Medicare beneficiaries and what my office did was start to work on the creation of an API so that Medicare beneficiaries could not only download the data but directed to an app of their choice. But what's very, very important here is that you need to make sure that it really is that Medicare beneficiary who's downloading the data that, that no one else is getting access to it because it is sensitive data. So that's an example of something that we worked on.

Janet: 19:18 Very, very cool. Now you're not necessarily a computer scientist by training, however.

Susannah: 19:24 No, I studied anthropology and. Okay.

Janet: 19:29 Tell me the correlation between.

Susannah: 19:32 Yeah, so when I was in school, so, so first I should say that I'm the daughter of an engineer and a journalist. My Dad was an engineer and my sister's an engineer. My brother's an engineer. And so I was an early Internet user at home because of my dad. He was the kind of person who would, who would read like C++ books at night for fun. And so I was not as manager to technology, but I studied anthropology because I saw it as a really interesting systematic way to understand society, to understand the culture. I use the skills of an anthropologist in my work as a researcher because most of the Pew Research Center's work is based on national surveys. But what I saw is that there was no way for us sitting in an office building in Washington dc we couldn't possibly understand and therefore ask good questions of Americans who are using the Internet for health and healthcare if we didn't get out there and listen if we didn't get out there and do fieldwork in the way that an anthropologist. And so when I was developing questionnaires, I would start by doing online surveys and online listening tours of people who were gathering in communities. And it turned out to be kind of a secret weapon. People would say. How were you able to predict the rise of mobile so early? How were you as the Pew Research Center at able to predict the rise of the importance of health data so early? And it was because of the field work that we did, talking to people, especially as I mentioned, with rare and life-changing diagnoses.

Janet: 21:22 And how did you do that exactly?

Susannah: 21:25 The first time we did this kind of field work? I was very, very fortunate to have a mentor in Tom and Tom was someone who had graduated from Yale Medical School. But decided that the most important thing for him to do was to find ways to empower people with health information. And by the way, this was in the 19 seventies, so selfies in seventies. Yeah. So in the sixties and seventies, he, for example, was the first medical editor of the whole earth catalog. And as soon as the internet came along, he understood that it was finally the platform that would allow people to connect with information. He really believed that people should get health education in the same way that we get drivers education. And so he became a, an advisor to us at the Pew Internet Project and he became a mentor to me personally and he knew all kinds of wonderful people who ran online communities. For example, John Lester and Dan Hoke Ram, the first online community for people with neurological issues, seizure disorder, traumatic brain injury. And so for example, one of our first pieces of fieldwork was in that community in doing a survey, asking people to tell us stories about what they learned by being part of that community.

Janet: 22:54 That is such a good example of go to the source and that I feel like sometimes our information is just rehashed versions of rehashed versions of older data and gee, old and the Internet feels like, you know, if you're more than three years old, your data, that could be a problem.

Susannah: 23:13 Absolutely, and what I also have found is that if you want to see the future, you should pay attention to what hackers are doing, what artists are doing, people who really push the edges of whatever field they're in and in healthcare. That is people living with rare and life-changing diagnoses. People who are living with ALS, for example. That was the motivation behind patients like me, which was a very early platform for people to collect and their own data about how they're reacting. For example, two different treatments and medications so that if you can track the progression of your disease, you might be able to see the future a little bit faster and crucially do need that data to the common meaning. It might benefit you, but it will certainly benefit the people who are behind you on the same path. That's again, something that I see as very, very hopeful that the internet can often unlock the ability for altruistic action and I really believed that it is part of human nature to want to help other people, the platforms where I like to hang out, those where people are helping each other.

Janet: 24:38 That's definitely one of the things I felt when I came into the healthcare community is that everyone was so willing to share information, to answer questions and to be helpful and I felt like it was a very nonjudgmental space. Now we have newer challenges as more and more people are joining social without necessarily having appropriate social skills, but that's something that as individuals we can aspire to improve.

Susannah: 25:08 Absolutely, and there are differences between open platforms where anyone can join and closed platforms where there's a little bit more moderation. There's a gate, if not a wall...

Janet: 25:21 and basic guidelines. If you come in here, this is going to be a place of good behavior.

Susannah: 25:26 Exactly. As opposed to the wild, wild west, which just now Facebook and Twitter and the other platforms are having to figure out retroactively how do you set rules for an environment that didn't have very many rules? So let me ask about where you are right now. You left the HHS position in January of 17. So what have you been up to? What I decided to do is get back into research because when I finished my service, yes, I looked around and saw that the Pew Research Center had decided not to continue my portfolio of health and technology research and really nobody had picked up that baton.

Janet: 26:05 I want to cry now.

Susannah: 26:08 Well in some ways our initial findings of how many people look online for health information became old hat. It became something that everyone assumed that everyone knows. And so what I am continually interested in is again, pushing the edges. So where are the new edges? It was edgy back in the year, 2000 to ask people about whether they are looking for a diagnosis online. Now the edges are more in terms of what I call peer to peer healthcare and we hadn't had a fresh measure of that since a survey that I did in 2012 and so I was approached by Hope Lab foundation in San Francisco to create a research project and national research project that asked teens and young adults about how they use social media and other digital health resources. They have a special interest not only in this age group, 40 to 22-year-olds, but they and a partner that came onto the project, the wellbeing trust have a special interest in emotional wellbeing and so in addition to asking traditional questions about how people use the internet to gather, share and create health information, we also ask questions about whether the respondents were experiencing depressive symptoms and so it's through that lens that we were able to do some really interesting analysis about emotional wellbeing.

Janet: 27:41 Well, since you're talking to this age group, obviously the topic of online and cyberbullying is really big. Now we know that kids are bullies and have been bullied since kids were kids. So my question is, are you finding comparing offline bullying to online bullying, is it worse?

Susannah: 28:00 So we didn't go after the bullying question straight on. What we were interested to find out is whether social media is a platform that makes teens and young adults feel better about themselves or feels worse about themselves, for example. And bullying is one aspect of that. We were also interested in hearing from them directly. So in addition to asking traditional survey questions, we made sure that the survey included five essay questions. This was an online survey. So that's the magic doing an online survey. It allows for an open-end set of questions. And so we ask people, tell us the story about when you've gone online and use social media, did it make you feel bad or did it make you feel good? Tell us the story about those things. And cyberbullying was mentioned, but not as often as other aspects of social media.

Susannah: 28:59 The dreaded FOMO, fear of missing out was part of it. People also mentioned that seemed like everybody else was doing better in life, but you know, it was really interesting is that there were more stories about how teens and young adults are using social media to boost their spirits, to find inspiration. You know, there were a lot of stories about people who carry their social media feed to make sure that they really see positive images. They talk about how if I'm feeling low while I go on Instagram and I look at funny cat memes and that cheers me up, or another person wrote about how they follow accounts that share inspirational biblical quotes and that really helps them to feel better. And so I think what's emerging is more of an understanding that social media can be used as a tool and that we have an opportunity to help educate people about how to use it as a tool for positive outcomes. And that that's actually something I'm really excited for. All kinds of people to explore. Whether it's in healthcare, whether it's educators, whether it's policymakers, whether it's technology companies. Looking at this data and seeing that this is already happening. How can we boost the signal on using social media for good?

Janet: 30:27 All right, well I. I hate to be a devil's advocate, but I'm going to do it anyway. If everybody is filtering only for the good, now in some cases the good is only what I want to hear, but what you end up is that whole silo or you're in a vacuum and you're just reinforcing. Now I get what I get what you're saying about young adults and wanting to only read positive things, but that means they're reading nothing about politics and if we want to engage them in society, they've got to be getting some information about what's going on in the world around them.

Susannah: 31:04 Absolutely. So these questions pertain to when you're feeling low, what do you do so that it wasn't necessarily about how do you gather information about current events? Because actually, the Pew Research Center is continuing to do research about that. They have some new data about how people are using social media to gather information about current events and as you might expect, it's a pretty high level, especially among young adults. So it's not a question of turning away from current events or politics, it's a question of when you yourself are feeling sad, how do you use social media and empowering people to to frankly put down their phone if they know that social media makes them feel bad, then telling people it's okay. You don't have to look at Facebook today. You can put down your phone if it's making you feel sad.

Janet: 32:06 See, that was my next question. You already answered it, which is sometimes social media is not the solution and going out for a walk or go and have a coffee with friends. It really is.

Susannah: 32:18 Absolutely. And people told stories about that as well. And in our survey that they say, when I'm feeling low, I put down my phone, I go offline, I call somebody and say, you know, can we get together? One aspect which I thought you might be interested in is people who are potentially in a minority group are isolated, are likely to go online and look for other people like them. And I'm thinking here of teens and young adults who are in the LGBTQ population, they were more likely, um, unfortunately, to report that they were experiencing depressive symptoms and more likely to use social media to reach out to other people. We had a question where we asked, have you read, listened to or watched other people share about their health experiences online and LGBTQ youth were more likely than those who you know as, as they say, cisgender and street youth to go online and look for people who were telling their stories online.

Susannah: 33:29 And that can be is really important because so often in healthcare social media circles, we talk about the value of sharing stories and here's some data that shows how important it is. If there is an audience out there, what's also important is you never know who's going to watch that story, who's going to watch that video, who's gonna read that blog post and it's really going to make a difference and they might not leave a comment you might not know that you made. And that's why I was so passionate to do this research and what law. Let me just tell you, it's 61 percent of all teens and young adults in the United States say they've read, listened to or watched other people share about their health experiences online, positive or negative, positive or negative.

Janet: 34:22 Oh Wow. That's huge. That's a huge number. And particularly when we talk about how hard or younger demographics are to reach, put the information out there, make it available. They'll find it obviously.

Susannah: 34:35 Well that's what we're finding out is especially video.

Speaker 1: 34:38 Oh, that's interesting. So what about the level of anonymity that some people in the communities, the communities that are concerned about exposure? Are they finding that it's literally going on camera and being seen is what helps?

Susannah: 34:54 So we didn't ask the question. This survey specifically about data security or anonymity. What my friends who study privacy and security tell me is that younger people are quite savvy about cloaking their identity if they want to. They are able to create throwaway emails to register for a site under a pseudonym, for example, and it's actually older adults, baby boomers who are less likely to be as savvy about cloaking their identity online. So that's one aspect of that I think is an opportunity across the board for education. If you want to remain anonymous, what are the ways that you can do that?

Janet: 35:42 And what is going to be the end result of all this information that you've been gathering through Hope Lab?

Susannah: 35:48 We published a report at the end of July that goes into detail about how teens and young adults use digital health tools and then we had a whole chapter specifically about looking at it through the lens of the teens and young adults who are living with depressive symptoms versus those who are not. And so that report is available for free on the Hope Lab website.

Janet: 36:14 Great. Well to those folks listening, I will have a link in the show notes so that you can get right to that and take a look at this. Well, that's fascinating. Now you've taken 15 years of research, in particular, your most recent research and you're going to be speaking at the Mayo Clinic, social media networks annual meeting, which as a reminder is going to be November 14 and 15 of 2018 in Jacksonville, Florida. At the Mayo campus and your topic is to share, connect, engage social media as a platform for hope. Now we've talked about hope and I think you and I are singing to the choir here that we definitely believe that social media has many, many positive things going for it. Uh, and that we shouldn't be turning our backs on it just because we hear things that we don't necessarily want to hear. That said, what is your topic going to address?

Susannah: 37:06 What I hope to do with this talk is give the choir some data. So often when I'm talking to people, whether it's an audience, as you say, of preaching to the choir or it's an audience of skeptics. I like to come with data that shows that the facts are on the ground. This is how many people are using these tools in various demographic groups across, you know, income and education groups. And so if you want to reach people, then you need to reach people through social media. What I'm also going to do is tell some of the stories that I've collected in my fieldwork of examples of how people have been able to connect to each other to find the clinical trial that they needed to find the doctor for their child or for their loved one, and to say to this audience, use this data to convince your colleagues to convince your funders, whoever it is that controls the information silos in your organization or who controls the budget.

Susannah: 38:22 Make sure that they know how many people, for example, are using their phones to look for information and use that data to help them to see how important it is to make every healthcare website mobile first. Not just mobile friendly, and that once you make your information find-able and shareable, that's how we're really going to help unlock well-being because you'll have agents you don't even know about who is out there ready to collect information and share it in their neighborhoods. Whether it's a virtual neighborhood or a real neighborhood, an offline neighborhood. There are so many people who want to connect to science who want to connect to fact-based information and who then want to be able to share it. So how do we empower those people to be part of healthcare?

Janet: 39:24 You know, one of the statistics from Pew that I often quoted my teaching is that a 10 percent of mobile users, their phone is their computer is their only access to the internet, so it's not like they're glancing here and then they're going to go home and open up the laptop. That's their only source of access to the Internet.

Susannah: 39:46 That is true and, and something that's, that's important to know is that that's often the lower socioeconomic status folks who are mobile only and so sometimes I'll speak to, for example, a group of hospital CEOs and there'll be from a whole range of communities, some serve a safety net population, some sort of a higher income population. And what I always tell them is, is that by making sure your information is mobile friendly and even better mobile first you are serving all populations. You're serving that mobile-only safety net population as well as the higher income folks who are also using their smartphones to gather health.

Janet: 40:34 Fascinating. Now, this project ended in July. Does that mean you're now getting new clients for your, for your practice?

Susannah: 40:42 Yeah. I got permission from the Pew Research Center to take the portfolio that I created there and republish it as an Ebook, so I'm working on that project and we'll be writing new introductions to that material because what I find is that some of the material is evergreen. You know, we, we need to update some of the numbers, but in looking back at what I published in 2012 and 2013, it really is salient today's population. So I'm working on that and yeah, I'm actually looking for partners to work on a survey of the adult population in the US since the Hope Lab and well-being trust survey focused on teens and young adults. I now really to do a survey that renews our data about older adults.

Janet: 41:39 Absolutely. I mean, my eyes were opened this morning listening to an NPR story about medical cannabis clinics, getting buses and going to senior centers and picking people up and bringing them over to go shopping or learn about cannabis and who'd have thought?

Susannah: 41:57 Yeah, and we're really just at the beginning, hopefully of a whole range of possibilities and innovations for older adults. You know, it's a passion of mine because I see such an opportunity. That's one of those things, you know, being up in the crow's nest, we're looking at across the landscape, it's both an iceberg and potential paradise island of opportunity. We're going to have a population of older adults that I'm not sure that we're really ready for in terms of our caregiver population and so wow, we really need to think about how to care for older adults and there's great innovation to be had.

Janet: 42:39 Absolutely. Well, Susannah, I'm thrilled that you joined the podcast today and I really look forward to meeting you in person at the Mayo Clinic, social media networks annual conference coming up November 14th and 15th in Jacksonville, Florida. It's going to be easy to find when you Google online, but socialmedia.MayoClinic.Org. We'll get you to the right place and I so, so appreciate your time today. Fascinating. As always, I have pages of notes and I'm definitely going to be looking into some of the things that you referenced today, particularly Hope Lab and the well-being trust. Thank you so much for joining me.

Susannah: 43:17 Thank you.

Announcer: 43:19 And now here's a social media success tip.

Farris Timimi: 43:22 Hi, I'm Ferris Timimi with the Get Social Health podcast. My social media tip would be for healthcare providers. Consider social media strategy's not as a broadcast medium, but rather as a listening strategy to truly understand the lived experience of a patient as they progress through their disease to recovery. There can be no better avenue for gathering real-world data.

Announcer: 43:46 You've been listening to, they Get Social Health podcast. The show notes are located at getsocialhealth.com to join our healthcare social media journey, follow at, Get Social Health on Twitter and start a conversation.

Janet: 44:03 Thanks for listening to the Get Social Health podcast. A production of the healthcare marketing network and a proud member of the healthcare podcasters community. I'd like to do to take a moment to tell you a bit about the healthcare marketing network. We're a community of freelance healthcare writers. Our organization can match your company or healthcare practice with clinically accurate, specialized or general healthcare and medical content from blogs to white papers. To see the healthcare marketing network has the writers you need to reach your business audience or patients. To find out more, visit healthcare marketing network.com or contact me via social media or email me at janet@healthcaremarketingnetwork.com. Thanks for listening to the Get Social Health podcast.

Reach out to Susannah Fox: https://www.linkedin.com/in/susannah-fox-b27450/

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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 something or where basically it was all done in one room because back in those days it was, you know, you were here for a while and they rolled into the delivery room and so they were just inventing this alternative kind of space and it was the oldest physician in the practice who was over 70 who really was hoping to be the first person to use that room. So I will defend the mature generation and say it isn't just generational regarding whether they're willing to adapt to new things. Because I see, for instance, in the entrepreneurial world, the average entrepreneur is over the age of 40, so we kind of get in our heads that it's all the millennial's in the digital natives, but I see all kinds of people in a more mature segment trying to learn and catch up.

Susannah: 10:43 I totally agree. Thank you for saying that. And what I've also heard in my fieldwork and talking to people who are living with life-changing diagnosis and rare conditions, is that the specialists that they go to value when patients have done a lot of homework, they value when patients come and say, well, I'm part of a worldwide network of people with this condition and we've all pooled our data. Here's what we believe, you know, can we investigate this? And so, you know, as we think about the spectrum of who is open to the Internet's impact on health and healthcare, we absolutely can't just talk about age and generational differences. You know, we can talk about specialty differences. You know, how our pediatricians different, for example, from geriatricians. And you know, one thing that I love is I'm really interested in the quality improvement movement as well and when I go to those meetings there so often dominated by pediatricians and I find that so fascinating that pediatricians seem to be really open to the possibility of change in their industry. And it actually dovetails really well with their audience being the moms and dads who are searching online for information that's a team that surrounds a child that's really ready to use all the information available to help that stay healthy.

Janet: 12:12 Oh. And I love what's happening over in the American Academy of Pediatrics. They are embracing social media. You can become a tweety attrition and help them share stories. And when I interviewed the president of the AAP a few years ago, one of the things that was said is that had pediatricians been online and active in social media in numbers that many years ago when the whole discussion of vaccines and autism came up, if they had been able to end moss respond authoritatively in social media, it might not have turned into something. But unfortunately, by being more passive about it, they let other people take their voice and really change healthcare for pediatricians. And so I think that part of their response and being open-minded is we can't afford not to be because we can see the devastation that can happen when pupil spread incorrect information.

Susannah: 13:09 Yeah, I love that story and think that it is a story that could be told across multiple disciplines. There are going to be other moments when there is misinformation when there is misunderstanding and so it really makes sense for clinicians to be ready and to have, you know, their field marshals out there ready to go on social media.

Speaker 1: 13:34 Absolutely. Because the other thing with knowledge comes wisdom and comes confidence and indeed comes hope because if nobody's responding with information that's accurate and correct, then people worry. So if you are there with them, don't worry. Here's what happens. You know, if you can imagine when we had to healthcare providers come to the United States with a confirmed exposure to a bola and how literally the whole country was freaking out. That's a time when we needed healthcare people. And many of them did step up and say, you don't have to worry. Don't panic.

Susannah: 14:13 That's right.

Janet: 14:14 Well, I think that's absolutely fascinating work now. You also then worked for the US Department of Health and Human Services. So tell me what the transition was like and what kind of projects you worked on when you were a government employee.

Susannah: 14:27 I should say that when I left the Pew Research Center it was because I felt that I couldn't write another research paper about the internet and healthcare. I felt like I. I had some answers and I wanted to try and get in the trenches a little bit and try to change things based on all the observational work and data collection that I'd done. And so first I went to the Robert Wood Johnson Foundation to work because of their entrepreneur in residence. While I was there, I got a call from Brian Civic and Todd Park. Todd was the first CTO at the US Department of Health and Human Services. He was appointed by President Obama to create that office and then had moved up to become the CTO of the White House. And Brian took the spot as HHS CTO and they called and said, we think that you're the third CTO, we think that you should be the next one, and I, I have to tell you, I said, no, no, no, no, you don't understand.

Susannah: 15:29 I'm really enjoying my work here at the foundation. Then they started describing what the portfolio does. So the portfolio of the office of the chief technology officer to HHS oversees the open house data initiative. Well, I love that initiative. That's really what I believe is going to unlock well being for a lot of people and that is that data should flow to where it needs to be, whether we're talking about national data in the realm of public health, whether we're talking about improving it at the practice level or whether you're going to give access to an individual. So they caught my attention to that and then the rest of the portfolio is so much about empowering HHS employees, whether they work at NIH or CDC or FDA or Indian health services to try new things, to act like they are entrepreneurs. Well, I couldn't resist the opportunity because I really do believe that a lot of the spirit of the Internet, which some people associate with silicon valley, but I really think now is is everywhere.

Susannah: 16:45 This idea that we should be experimented with, new ways to deliver care. I think that shouldn't be limited to startup companies and it was amazing to serve at HHS and to talk with people about how to unlock data, how to unlock the information that the federal government holds to better serve the American people. Now I should pause and say the other part of the role is to serve the leadership, to serve the secretary and the leadership at each of the operating divisions. As sort of a lookout and I sort of think about the role of the chief technology officer as someone who's up in the crow's nest of a ship, scanning the horizon for opportunities and for hazards in the technology landscape. And so that, for example, an opportunity that I saw in the landscape and then I brought to the leadership was this new movement towards not only innovation in software and data but in hardware like medical devices and assistive devices for people living with a disability.

Janet: 17:57 Oh, okay. Fascinating. Well, did you see the cybersecurity issues on the horizon?

Susannah: 18:03 So, yes. And cybersecurity was something that we discussed quite a bit and that was particularly in terms of how to handle, for example, data security around the blue button initiative. The Centers for Medicare Medicaid services created a way for Medicare beneficiaries to be able to download a simple text file of their claims data and the veteran's administration had done it first. The VA had created the blue button download for veterans. It had been really popular and so cms rolled out a version for Medicare beneficiaries and what my office did was start to work on the creation of an API so that Medicare beneficiaries could not only download the data but directed to an app of their choice. But what's very, very important here is that you need to make sure that it really is that Medicare beneficiary who's downloading the data that, that no one else is getting access to it because it is sensitive data. So that's an example of something that we worked on.

Janet: 19:18 Very, very cool. Now you're not necessarily a computer scientist by training, however.

Susannah: 19:24 No, I studied anthropology and. Okay.

Janet: 19:29 Tell me the correlation between.

Susannah: 19:32 Yeah, so when I was in school, so, so first I should say that I'm the daughter of an engineer and a journalist. My Dad was an engineer and my sister's an engineer. My brother's an engineer. And so I was an early Internet user at home because of my dad. He was the kind of person who would, who would read like C++ books at night for fun. And so I was not as manager to technology, but I studied anthropology because I saw it as a really interesting systematic way to understand society, to understand the culture. I use the skills of an anthropologist in my work as a researcher because most of the Pew Research Center's work is based on national surveys. But what I saw is that there was no way for us sitting in an office building in Washington dc we couldn't possibly understand and therefore ask good questions of Americans who are using the Internet for health and healthcare if we didn't get out there and listen if we didn't get out there and do fieldwork in the way that an anthropologist. And so when I was developing questionnaires, I would start by doing online surveys and online listening tours of people who were gathering in communities. And it turned out to be kind of a secret weapon. People would say. How were you able to predict the rise of mobile so early? How were you as the Pew Research Center at able to predict the rise of the importance of health data so early? And it was because of the field work that we did, talking to people, especially as I mentioned, with rare and life-changing diagnoses.

Janet: 21:22 And how did you do that exactly?

Susannah: 21:25 The first time we did this kind of field work? I was very, very fortunate to have a mentor in Tom and Tom was someone who had graduated from Yale Medical School. But decided that the most important thing for him to do was to find ways to empower people with health information. And by the way, this was in the 19 seventies, so selfies in seventies. Yeah. So in the sixties and seventies, he, for example, was the first medical editor of the whole earth catalog. And as soon as the internet came along, he understood that it was finally the platform that would allow people to connect with information. He really believed that people should get health education in the same way that we get drivers education. And so he became a, an advisor to us at the Pew Internet Project and he became a mentor to me personally and he knew all kinds of wonderful people who ran online communities. For example, John Lester and Dan Hoke Ram, the first online community for people with neurological issues, seizure disorder, traumatic brain injury. And so for example, one of our first pieces of fieldwork was in that community in doing a survey, asking people to tell us stories about what they learned by being part of that community.

Janet: 22:54 That is such a good example of go to the source and that I feel like sometimes our information is just rehashed versions of rehashed versions of older data and gee, old and the Internet feels like, you know, if you're more than three years old, your data, that could be a problem.

Susannah: 23:13 Absolutely, and what I also have found is that if you want to see the future, you should pay attention to what hackers are doing, what artists are doing, people who really push the edges of whatever field they're in and in healthcare. That is people living with rare and life-changing diagnoses. People who are living with ALS, for example. That was the motivation behind patients like me, which was a very early platform for people to collect and their own data about how they're reacting. For example, two different treatments and medications so that if you can track the progression of your disease, you might be able to see the future a little bit faster and crucially do need that data to the common meaning. It might benefit you, but it will certainly benefit the people who are behind you on the same path. That's again, something that I see as very, very hopeful that the internet can often unlock the ability for altruistic action and I really believed that it is part of human nature to want to help other people, the platforms where I like to hang out, those where people are helping each other.

Janet: 24:38 That's definitely one of the things I felt when I came into the healthcare community is that everyone was so willing to share information, to answer questions and to be helpful and I felt like it was a very nonjudgmental space. Now we have newer challenges as more and more people are joining social without necessarily having appropriate social skills, but that's something that as individuals we can aspire to improve.

Susannah: 25:08 Absolutely, and there are differences between open platforms where anyone can join and closed platforms where there's a little bit more moderation. There's a gate, if not a wall...

Janet: 25:21 and basic guidelines. If you come in here, this is going to be a place of good behavior.

Susannah: 25:26 Exactly. As opposed to the wild, wild west, which just now Facebook and Twitter and the other platforms are having to figure out retroactively how do you set rules for an environment that didn't have very many rules? So let me ask about where you are right now. You left the HHS position in January of 17. So what have you been up to? What I decided to do is get back into research because when I finished my service, yes, I looked around and saw that the Pew Research Center had decided not to continue my portfolio of health and technology research and really nobody had picked up that baton.

Janet: 26:05 I want to cry now.

Susannah: 26:08 Well in some ways our initial findings of how many people look online for health information became old hat. It became something that everyone assumed that everyone knows. And so what I am continually interested in is again, pushing the edges. So where are the new edges? It was edgy back in the year, 2000 to ask people about whether they are looking for a diagnosis online. Now the edges are more in terms of what I call peer to peer healthcare and we hadn't had a fresh measure of that since a survey that I did in 2012 and so I was approached by Hope Lab foundation in San Francisco to create a research project and national research project that asked teens and young adults about how they use social media and other digital health resources. They have a special interest not only in this age group, 40 to 22-year-olds, but they and a partner that came onto the project, the wellbeing trust have a special interest in emotional wellbeing and so in addition to asking traditional questions about how people use the internet to gather, share and create health information, we also ask questions about whether the respondents were experiencing depressive symptoms and so it's through that lens that we were able to do some really interesting analysis about emotional wellbeing.

Janet: 27:41 Well, since you're talking to this age group, obviously the topic of online and cyberbullying is really big. Now we know that kids are bullies and have been bullied since kids were kids. So my question is, are you finding comparing offline bullying to online bullying, is it worse?

Susannah: 28:00 So we didn't go after the bullying question straight on. What we were interested to find out is whether social media is a platform that makes teens and young adults feel better about themselves or feels worse about themselves, for example. And bullying is one aspect of that. We were also interested in hearing from them directly. So in addition to asking traditional survey questions, we made sure that the survey included five essay questions. This was an online survey. So that's the magic doing an online survey. It allows for an open-end set of questions. And so we ask people, tell us the story about when you've gone online and use social media, did it make you feel bad or did it make you feel good? Tell us the story about those things. And cyberbullying was mentioned, but not as often as other aspects of social media.

Susannah: 28:59 The dreaded FOMO, fear of missing out was part of it. People also mentioned that seemed like everybody else was doing better in life, but you know, it was really interesting is that there were more stories about how teens and young adults are using social media to boost their spirits, to find inspiration. You know, there were a lot of stories about people who carry their social media feed to make sure that they really see positive images. They talk about how if I'm feeling low while I go on Instagram and I look at funny cat memes and that cheers me up, or another person wrote about how they follow accounts that share inspirational biblical quotes and that really helps them to feel better. And so I think what's emerging is more of an understanding that social media can be used as a tool and that we have an opportunity to help educate people about how to use it as a tool for positive outcomes. And that that's actually something I'm really excited for. All kinds of people to explore. Whether it's in healthcare, whether it's educators, whether it's policymakers, whether it's technology companies. Looking at this data and seeing that this is already happening. How can we boost the signal on using social media for good?

Janet: 30:27 All right, well I. I hate to be a devil's advocate, but I'm going to do it anyway. If everybody is filtering only for the good, now in some cases the good is only what I want to hear, but what you end up is that whole silo or you're in a vacuum and you're just reinforcing. Now I get what I get what you're saying about young adults and wanting to only read positive things, but that means they're reading nothing about politics and if we want to engage them in society, they've got to be getting some information about what's going on in the world around them.

Susannah: 31:04 Absolutely. So these questions pertain to when you're feeling low, what do you do so that it wasn't necessarily about how do you gather information about current events? Because actually, the Pew Research Center is continuing to do research about that. They have some new data about how people are using social media to gather information about current events and as you might expect, it's a pretty high level, especially among young adults. So it's not a question of turning away from current events or politics, it's a question of when you yourself are feeling sad, how do you use social media and empowering people to to frankly put down their phone if they know that social media makes them feel bad, then telling people it's okay. You don't have to look at Facebook today. You can put down your phone if it's making you feel sad.

Janet: 32:06 See, that was my next question. You already answered it, which is sometimes social media is not the solution and going out for a walk or go and have a coffee with friends. It really is.

Susannah: 32:18 Absolutely. And people told stories about that as well. And in our survey that they say, when I'm feeling low, I put down my phone, I go offline, I call somebody and say, you know, can we get together? One aspect which I thought you might be interested in is people who are potentially in a minority group are isolated, are likely to go online and look for other people like them. And I'm thinking here of teens and young adults who are in the LGBTQ population, they were more likely, um, unfortunately, to report that they were experiencing depressive symptoms and more likely to use social media to reach out to other people. We had a question where we asked, have you read, listened to or watched other people share about their health experiences online and LGBTQ youth were more likely than those who you know as, as they say, cisgender and street youth to go online and look for people who were telling their stories online.

Susannah: 33:29 And that can be is really important because so often in healthcare social media circles, we talk about the value of sharing stories and here's some data that shows how important it is. If there is an audience out there, what's also important is you never know who's going to watch that story, who's going to watch that video, who's gonna read that blog post and it's really going to make a difference and they might not leave a comment you might not know that you made. And that's why I was so passionate to do this research and what law. Let me just tell you, it's 61 percent of all teens and young adults in the United States say they've read, listened to or watched other people share about their health experiences online, positive or negative, positive or negative.

Janet: 34:22 Oh Wow. That's huge. That's a huge number. And particularly when we talk about how hard or younger demographics are to reach, put the information out there, make it available. They'll find it obviously.

Susannah: 34:35 Well that's what we're finding out is especially video.

Speaker 1: 34:38 Oh, that's interesting. So what about the level of anonymity that some people in the communities, the communities that are concerned about exposure? Are they finding that it's literally going on camera and being seen is what helps?

Susannah: 34:54 So we didn't ask the question. This survey specifically about data security or anonymity. What my friends who study privacy and security tell me is that younger people are quite savvy about cloaking their identity if they want to. They are able to create throwaway emails to register for a site under a pseudonym, for example, and it's actually older adults, baby boomers who are less likely to be as savvy about cloaking their identity online. So that's one aspect of that I think is an opportunity across the board for education. If you want to remain anonymous, what are the ways that you can do that?

Janet: 35:42 And what is going to be the end result of all this information that you've been gathering through Hope Lab?

Susannah: 35:48 We published a report at the end of July that goes into detail about how teens and young adults use digital health tools and then we had a whole chapter specifically about looking at it through the lens of the teens and young adults who are living with depressive symptoms versus those who are not. And so that report is available for free on the Hope Lab website.

Janet: 36:14 Great. Well to those folks listening, I will have a link in the show notes so that you can get right to that and take a look at this. Well, that's fascinating. Now you've taken 15 years of research, in particular, your most recent research and you're going to be speaking at the Mayo Clinic, social media networks annual meeting, which as a reminder is going to be November 14 and 15 of 2018 in Jacksonville, Florida. At the Mayo campus and your topic is to share, connect, engage social media as a platform for hope. Now we've talked about hope and I think you and I are singing to the choir here that we definitely believe that social media has many, many positive things going for it. Uh, and that we shouldn't be turning our backs on it just because we hear things that we don't necessarily want to hear. That said, what is your topic going to address?

Susannah: 37:06 What I hope to do with this talk is give the choir some data. So often when I'm talking to people, whether it's an audience, as you say, of preaching to the choir or it's an audience of skeptics. I like to come with data that shows that the facts are on the ground. This is how many people are using these tools in various demographic groups across, you know, income and education groups. And so if you want to reach people, then you need to reach people through social media. What I'm also going to do is tell some of the stories that I've collected in my fieldwork of examples of how people have been able to connect to each other to find the clinical trial that they needed to find the doctor for their child or for their loved one, and to say to this audience, use this data to convince your colleagues to convince your funders, whoever it is that controls the information silos in your organization or who controls the budget.

Susannah: 38:22 Make sure that they know how many people, for example, are using their phones to look for information and use that data to help them to see how important it is to make every healthcare website mobile first. Not just mobile friendly, and that once you make your information find-able and shareable, that's how we're really going to help unlock well-being because you'll have agents you don't even know about who is out there ready to collect information and share it in their neighborhoods. Whether it's a virtual neighborhood or a real neighborhood, an offline neighborhood. There are so many people who want to connect to science who want to connect to fact-based information and who then want to be able to share it. So how do we empower those people to be part of healthcare?

Janet: 39:24 You know, one of the statistics from Pew that I often quoted my teaching is that a 10 percent of mobile users, their phone is their computer is their only access to the internet, so it's not like they're glancing here and then they're going to go home and open up the laptop. That's their only source of access to the Internet.

Susannah: 39:46 That is true and, and something that's, that's important to know is that that's often the lower socioeconomic status folks who are mobile only and so sometimes I'll speak to, for example, a group of hospital CEOs and there'll be from a whole range of communities, some serve a safety net population, some sort of a higher income population. And what I always tell them is, is that by making sure your information is mobile friendly and even better mobile first you are serving all populations. You're serving that mobile-only safety net population as well as the higher income folks who are also using their smartphones to gather health.

Janet: 40:34 Fascinating. Now, this project ended in July. Does that mean you're now getting new clients for your, for your practice?

Susannah: 40:42 Yeah. I got permission from the Pew Research Center to take the portfolio that I created there and republish it as an Ebook, so I'm working on that project and we'll be writing new introductions to that material because what I find is that some of the material is evergreen. You know, we, we need to update some of the numbers, but in looking back at what I published in 2012 and 2013, it really is salient today's population. So I'm working on that and yeah, I'm actually looking for partners to work on a survey of the adult population in the US since the Hope Lab and well-being trust survey focused on teens and young adults. I now really to do a survey that renews our data about older adults.

Janet: 41:39 Absolutely. I mean, my eyes were opened this morning listening to an NPR story about medical cannabis clinics, getting buses and going to senior centers and picking people up and bringing them over to go shopping or learn about cannabis and who'd have thought?

Susannah: 41:57 Yeah, and we're really just at the beginning, hopefully of a whole range of possibilities and innovations for older adults. You know, it's a passion of mine because I see such an opportunity. That's one of those things, you know, being up in the crow's nest, we're looking at across the landscape, it's both an iceberg and potential paradise island of opportunity. We're going to have a population of older adults that I'm not sure that we're really ready for in terms of our caregiver population and so wow, we really need to think about how to care for older adults and there's great innovation to be had.

Janet: 42:39 Absolutely. Well, Susannah, I'm thrilled that you joined the podcast today and I really look forward to meeting you in person at the Mayo Clinic, social media networks annual conference coming up November 14th and 15th in Jacksonville, Florida. It's going to be easy to find when you Google online, but socialmedia.MayoClinic.Org. We'll get you to the right place and I so, so appreciate your time today. Fascinating. As always, I have pages of notes and I'm definitely going to be looking into some of the things that you referenced today, particularly Hope Lab and the well-being trust. Thank you so much for joining me.

Susannah: 43:17 Thank you.

Announcer: 43:19 And now here's a social media success tip.

Farris Timimi: 43:22 Hi, I'm Ferris Timimi with the Get Social Health podcast. My social media tip would be for healthcare providers. Consider social media strategy's not as a broadcast medium, but rather as a listening strategy to truly understand the lived experience of a patient as they progress through their disease to recovery. There can be no better avenue for gathering real-world data.

Announcer: 43:46 You've been listening to, they Get Social Health podcast. The show notes are located at getsocialhealth.com to join our healthcare social media journey, follow at, Get Social Health on Twitter and start a conversation.

Janet: 44:03 Thanks for listening to the Get Social Health podcast. A production of the healthcare marketing network and a proud member of the healthcare podcasters community. I'd like to do to take a moment to tell you a bit about the healthcare marketing network. We're a community of freelance healthcare writers. Our organization can match your company or healthcare practice with clinically accurate, specialized or general healthcare and medical content from blogs to white papers. To see the healthcare marketing network has the writers you need to reach your business audience or patients. To find out more, visit healthcare marketing network.com or contact me via social media or email me at janet@healthcaremarketingnetwork.com. Thanks for listening to the Get Social Health podcast.

Reach out to Susannah Fox: https://www.linkedin.com/in/susannah-fox-b27450/

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