Nhma National Hispanic Medical Association s1

NHMA – NATIONAL HISPANIC MEDICAL ASSOCIATION

16th Annual Conference Workshop: Innovations that Improve the Health of Hispanics, Families and Communities Workshop B2: Using Social Media in Medicine More Effectively Washington, D.C. April 28, 2012 Contents

B2: Using Social Media in Medicine More

Effectively...... 1 B2: Using Social Media in Medicine More Effectively

[START B2.MP3]

STEPHANIE STROEVER, MPH: Good morning. First of all, I’d like to thank the National Hispanic Medical Association for inviting me to speak here today and share this information. I hope that it actually is beneficial to all of you in your outreach efforts with your patients in your practice or your future research. I’d also like to disclose upfront that I have no conflicts of interest of any kind in presenting today.

So to get started, using social media to communicate child health information - - low income parents was a research study that I worked on at the culmination of my Masters degree. And I’d like to acknowledge the research advisors on this project: Dr. Michael Mackert [phonetic] from the University of Texas at Austin, he’s in the Advertising Department, and Drs. Alfred McAlister [phonetic] and Deanne Helsher [phonetic] who are health promotion and behavioral science professors at the University of Texas School of Public Health, Austin Regional Campus.

And the funding for this study was provided by the Michael and Susan Della [phonetic] Foundation, through the Michael and Susan Della Center for Healthy Living, and the University of Texas School of Public Health, Austin Regional Campus.

So any of you who are involved in with patients or in academic research know that whatever you’re studying, and in this case, specifically, child and adolescent health, you kind of have a responsibility to get information out there, in this case, to parents, to help facilitate behavior change for positive health. And the idea behind this project was that there is really no solid evidence or really great research on what the most effective way to reach parents is, especially low income parents.

And we have this new technology, social media, that is really booming. All of the trends show that it’s increasing even in low income minority populations, suggest it’s going up, and the use is just going up. And so, the idea behind this project was to look at this new innovative

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 1 technology and see if it would be a worthwhile investment to use as part of our outreach efforts.

So the primary objective was to determine the value of using social media, and by value, I mean, is it a worthy investment of health promotion resources to communicate child health information to low income parents?

So I performed a qualitative formative evaluation. We collected qualitative data - - just to kind of get an idea: what’s going on, can this be a good idea, just as a starting place, and we selected participants through homogenous purposeful sampling. The inclusion criteria was a parent with a child that attends a school district, or attends a school, and a specific Central Texas school district, in this case, it was Dell [phonetic] Valley, and had to be English speaking. When we were originally designing this study, we had hoped to conduct them in both English and Spanish, but due to limited resources for actually holding the focus groups in Spanish and then translating and doing the analysis, it ended up being that we could just do English speaking. And that’s an excellent opportunity for future research.

Nonetheless, the students in this district that we selected are generally economically disadvantaged, which we determined based on their qualification for government assistance, and Hispanic. And we recruited through using flyers at a school based health clinic, and this is the only one in the area that does pediatric care, and it serves predominantly Hispanic families. So we were still able to reach that population that we were seeking.

In October 2010, we held four focus groups with a total of 19 participants. They each attended only one focus group, so we had from two to six participants in each focus group. And they were, they did receive an incentive for their time.

And we started out the discussion just to get a general feel: do they know what social media is? Do they use it? Is it something they’re interested in? What do they use? Social media is this overarching broad name for all kinds of applications, so are they on Facebook? Do they use Twitter? Are they more bloggers? What do they like to do? We had no idea.

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 2 And then we kind of narrowed it down to ask, okay, so if you are on it, would you consider using it as a method to get information about your child’s health, to get tips and tricks and other ways to have healthier children? And why or why not? And then, further on, we asked since we were a research center, would they consider getting it from someone like a university or a government if they were the ones sponsoring the website, or a nonprofit, and why or why not? So that’s kind of how the discussion went in these groups.

So our demographic results: most were female that attended. About half and half were White, and then Hispanic Latino or African-American. Most spoke English at home as the primary language, although we did have some English, slash, Spanish speakers. And the majority qualified and to participate in government assistance, and the majority had access to the internet either through their home or through public libraries. And these focus groups were actually held at the public libraries in this area as a way to reach these folks. And it was interesting because I saw some of the participants go from the group to the computer, so, and we also performed health literacy tests using the newest vital sign, and found that over half did, were likely to have low health literacy.

So what we found was that social networking sites like Facebook, MySpace, those sorts of sites, were the most commonly used application over the others. And its main use was to stay in touch with friends and family. This is what they are doing online when they’re on social media: staying in touch with friends, staying in touch with family, sharing pictures, stories, that sort of thing.

However, the actual use of these sites was really pretty low. They were on them, they had profiles, but they didn’t actually get on and use them all that often. And surprisingly, this wasn’t due to lack of access; it was due to lack of time. They have other priorities when they’re online, especially those who are at public libraries using the internet. They have a time limit. They get 30 minutes online because there are others waiting to use it, and so, they have other priorities. They’re online there to do specific things.

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 3 And so, social media may not qualify for one of those. As one participant stated, I have an account on Facebook and I really don’t have time to go to it. They have, as you know in your life and if you’re a parent, you just have a lot of other stuff going on, and so, getting on Facebook is just kind of down on the list for some people.

We also found that their willingness to use social media to change child health information was mixed. Some were excited about a new medium to get information, but most and many others objected, citing lack of credibility. They preferred to get their health information about their children, specifically about their children, face-to-face from someone that they trust, whether it be their parents or their doctor or the counselor at the Witt [phonetic] Clinic, like it wasn’t coming from an online source, it was not something that they were really interested in.

This was a great quotation that came out of it that really describes it. I’m not sure I would use social media because I would have to trust the person. They’re talking about my kid’s health; I don’t want some stranger on the computer telling me this, this, and this. It was really important to them that credibility, that trust would be there.

And several of the participants really stressed the desire to consult their doctors, which is, I could agree with that, and cited difficulty trusting online information. However, they were a little more amenable to the idea, if it came from, if they knew that the website that they were on, or the Facebook page, was sponsored by someone who, or run by someone who was at a government, university, something that already had some credibility behind it, something they could give a little bit more credence to and trust. This was a quotation: it might be a bit more trustworthy than taking someone’s information that is just kind of out there. And you know when you do a Google search, sometimes you’re just going to get crazy stuff, and it may not match and it may, it’s just all over the place.

So in summary, we had participants who are on Facebook, all are on social media, but they’re not necessarily comfortable in trusting that information when it comes to their children’s health. I’d like to kind of discuss some of the limitations before I conclude this study.

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 4 The nature of qualitative studies and the fact that this was a small sample size makes it less generalizable to the overall population, but I think that there were some very clear themes in this research that can be applied in the context of other research. And so, I feel like it was very, it was a good, pointing us in the right direction on how to proceed in this.

Participants we selected were based on a convenience sample from just one Central Texas school district. However, we found that our demographics and our sample is very comparable to what you might find in another low income minority community.

And although we did have good Hispanic representation in this focus group, we were only able to conduct the focus groups in English. And so, that’s definitely a limitation, and we can’t necessarily apply this to Spanish speaking low income parents, and that’s, like I said before, it’s a great opportunity for further research, given the resources.

So in conclusion, we can see that social media does have value because people are on it, the trends are going up, people are on social media, as part of an overall communication strategy that still includes some of those more traditional channels such as sitting down face-to-face with your doctor, or doing support groups, or newsletters or phone calls or other ways besides just the online social media.

But it’s important if you’re going to use this strategy to overcome some barriers, and that number one barrier is the trust issue. You need to have messages that come from perceived experts, and when I say perceived, like the patient has to feel like this is trusted information, and they should be personalized. And that may help overcome that barrier, that trust barrier, and establish a relationship between the information seeker online and the information provider online, and really facilitate their sharing of information that way.

And you need to remember that parental time is a really valuable resource. So if you’re going to use social media like a blog or a Facebook page, you’re going to have to figure out a way, be creative, really invest, put a lot of

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 5 effort into trying to pull that audience away from what they’re primarily doing on social media, which is getting to know friends and family a little bit better, and get them over to those health information websites.

So future research: we did a qualitative study just to get an idea, are people using this? Is this a good way to go? But we could definitely use a larger scale quantitative investigation in the future so to further this research. So thank you. [applause]

[off mic]

MODERATOR: We’ll hold questions until the end of the session.

DR. TAMINI: Forgive me. I need bifocals but refuse to admit it.

[off mic]

DR. TAMINI: All right, thank you. I appreciate the opportunity to share our perspective and our story. I’m the Medical Director for the Center for Social Media at the Mayo Clinic. What I want to do in the next few minutes is stress to you why I believe involvement in social media is not optional. I think it’ll be a message you’ll hear from all three speakers. If you look at utilization of online presence, the most common reason people use this is for email and internet search.

Third most common is health information, a lot of it peer- to-peer. So we need to have a presence in that platform to provide credible content to our patients. I want to provide you with a couple of cases of practical applications, and I want to stress a successful engagement, as in a successful marriage, requires you listen as well as you speak.

So first is a story I want to share about a UT ligament split tear, and for those, I’m a cardiologist so for those who aren’t familiar, as am I, as to what a UT ligament split tear is, it’s a very different kind of ligament split tear than the typical break of the ligament. It’s along the long axis, like a stalk of celery separating. It’d be very difficult to see by MRI.

This is Dick Berger [phonetic]. He described it and characterized physical exam findings, and the nice thing

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 6 about it is that if you can identify it, you can remove the inflammatory material, suture the ligament back together again, immobilize and rehab, and within three months, have a fairly good response. If you don’t, it could be debilitating.

This is Jason Worth [phonetic]. So Jason was a professional baseball player at spring training and was hit by an errant pitch in the wrist, had a debilitating wrist pain to the point that he could no longer open a bottle of ketchup. - - he had physical therapy, steroid injections, surgery, all without improvement and resolution.

After a year-and-a-half, he was ready to quit, and he was talking to a friend of his at the mailbox, who was a physician, and said, look, if you’re that debilitated, maybe you should head up to Minnesota and see Dick Berger for a second opinion, see if you may have something he can address like a UT ligament split tear. Jason saw Dr. Berger, had classic physical exam findings, had surgery the next day, and within three months, had rehab and signed a new contract with the Phillies as an extra outfielder for $850,000.

Now, fast-forward to a year or two later, and Jason was playing for the Phillies as he went to the World Series. We thought it was a good example of a story we could share, but we didn’t get a lot of traction with it. What we did do is we did have Lee Acey [phonetic], who is my admin partner, film Jason in the dugout with a flip camera, one of those little tiny, Cisco [phonetic] no longer makes them, but we bought a lot of flip cameras, telling his story in his words. So it’s his story, the patient’s story in his words. We posted that on our blog; we have a sharing blog for our patients to share stories. We also posted the transcript of that as well, and we called it Jason’s Story.

Now, the next year, Jason hit two homeruns with the Phillies; this is the World Series. This time, we had Jason’s Story in his own words. We had a flip video with the transcript of it. We shared it with our local newspaper, the Post Bulletin, which ran a story about him. So did the local news, KAL-TV, and they used Lee’s flip video, shot with that handheld Cisco, suggesting that even

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 7 though it’s not classically acceptable imaging, it can be really quite useful to use.

It was exciting, but then, it was picked up by USA Today as their splash for the health story. Now, all this is standard sort of health care. What’s different is the capacity to engage patients with this platform [phonetic].

Now, I’m old enough to remember when I came out of training, I was told that it took 17 years from the moment that something was discovered until it was known popularly. This is two years later. And when it appeared on the USA Today splash page, we asked them to implant a widget for a Twitter chat. So we had Dick Berger for one hour talking with patients in this platform discussing wrist pain, orthopedic issues, ways to address it, what you can look for, what UT ligament split tear is.

And that brings us to Erin Turner [phonetic]. So when this photo was taken, Erin was 28, she had had wrist pain for five years, debilitating pain to the point she was going to ask for her wrist to be fused to deal with the disability. I like the first line of her blog post: when I arrived at the Mayo Clinic in Rochester, Minnesota a few weeks ago, I was asked, who referred you? My answer was Twitter. As a product of the Twitter chat, she got the information she needed, the answers that she wanted, understood what her disease may have been, that she was willing to fly from D.C. to Rochester, Minnesota for a second opinion.

This is her blog post: Less than 24 hours after my initial appointment, I had not only a new diagnosis, a UT split tear, but had surgery to correct the problem. As I write this, my right arm is in a festive green but otherwise annoying cast. The short-term hassle, however, should be more than worth the long-term gain, the potential for a future without chronic wrist pain, a future without Twitter and those in the medical community willing to experiment with the new communication tools might not exist for me.

So that was two years, not 17, and it’s occurring because this is where our patients are; this is physically where they’re at. And I believe our moral obligation as care providers is to be there with them.

There’s a picture of Erin and Jason comparing wrist scars. They had a season opener in D.C., and we were able to get

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 8 her in the game to compare scars with Jason. Every story has got to have a happy ending: Jason signed in 2010 for the 13th most lucrative contract in MLB history, $126 million for seven years with the Washington Nationals.

But the point of the story isn’t that. The point of the story is this is where our patients are looking for good information, and we need to be there with them. That’s clinical knowledge diffusion. This is research.

So the second story I want to tell is who drives research? This story I want to tell is on SCAD [phonetic]. So for those who may not be familiar, SCAD is a spontaneous dissection of a coronary artery. It tears like a flap, a clot forms behind it, propagating closing the artery off. It typically occurs in young women in childbearing years. it can cause sudden death or profound heart failure, and it’s devastating, and up until recently, the largest - - was 48 patients. So we know nothing of meaningful insight regarding the disease.

This is Katie Leone [phonetic]. So in this photo, Katie is 38, she has had her second child, two months old, and she’s going to her doctor with fatigue and malaise. And I have two kids; I’m still tired and they’re five and four. And so, her doctor told her what I would tell her, which is you’ve got two young kids; of course you’re tired. Who wouldn’t be tired? When Katie started getting chest pain and she went to the ER, she was told she had a heart attack. She was told three true things: you have SCAD, it’s very rare, we don’t know much about it, very lucky to be alive, and we know what the prognosis is.

So put yourself in that position: be 38 for a minute, be a woman with a young family, and see your doctor who could tell you nothing of meaning. What are you going to do? You’re going to go home and you’re going to think, what the hell? Is this a time bomb? What should I do? And you’re going to get online.

So she went to WomensHeart.org, which is a peer-to-peer group, and posted all the SCAD, ladies, put your hands up, and there she met Laura Haywood Cory [phonetic]. And Laura and Katie said, you know what? This isn’t right; there are women here who have this disease and people are studying

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 9 us. And there are a lot of women here; we need to make someone study us.

So they had read about a conference coming up in Rochester, Minnesota, and thought, you know what? Let’s drive to Minnesota and force somebody to study us. We’ll just make somebody study us. [laughter]

So they cornered Sharon Hayes [phonetic] of the Women’s Conference and they said basically, we want you to study this disease. And Sharon said, this is interesting; I don’t know if it’s going to work or not. Why don’t we try a small pilot first? Let’s see if we can get 12 patients just to see if we can find 12 for your platform.

And so, she applied to the IRB for a 12-patient pilot as a proof of concept. She got approval in March, March 18 th, 2010. The same time she got approval, she said, you know what? We should set up a SCAD clinic because if we’re going to have SCAD patients we’re going to recruit, we’ll need a clinic with OB/GYN, medical genetics, cardiology.

So she got approval March 18 th. That same day, Katie went home and posted on the SCAD group, we’ve got a clinic ready to study us. Let’s get some patients together. Before Sharon could even post a recruitment ad, Katie and Laura had found 18 volunteers. Now, that’s all great, the proof is in the pudding, within six months, we had full medical records, angiograms, ECHOs on patients from the United Kingdom, New Zealand, Canada, and the United States. None of them traveled to the clinic to be seen.

Now, they didn’t stop there because they didn’t want it to stop there. They posted blog posts. By that, I mean the patients. They had emails, they had tweets, they said we want this to happen. They continued to follow patients towards us whether they wanted them to come or not. And we’re now on track to develop a patient registry of 2000 patients with SCAD and 400 of their relatives as a DNA biomarker database.

This has been highlighted in the Wall Street Journal, the Mayo Clinic Proceedings, and I tell this story because Sharon didn’t drive this. I love Sharon, she’s great, but she didn’t drive this. The patients drove this because they wanted this to happen. And they used social tools that are readily available to all of us, they’re not that

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 10 complex to use, to engage, empower, and bring patients together to be studied.

So the lessons I want to share with you are you’ve got to be ready for this, right? If they’re there, you’ve got to be ready. You’ve got to have a strategy and a plan and training in place. You’ve got to grow it for patients. You’ve got to remember this is the right thing to do, right? This isn’t marketing. There are marketing benefits, but this is just the fundamental right thing to do.

Now, I want to share some examples from our Hispanic sites. We have Hispanic Facebook, Twitter, we have a fairly large Hispanic presence. This is again showing the need of listening. This is someone looking for information on - - . We don’t have any Hispanic information on - - but we do have good resources online. What the patient needs is guidance to the right resource. That’s part of what we need to do. If you don’t have the resource they need, tell them where is good data of good quality. Put them in touch with it.

We also personalize your content. We maintain a YouTube playlist that tries to meet the needs of our consumers as they articulated them to us, and we grow it based on that response.

Now, I always love saying that, follow me on Facebook, like me on Twitter, - - that’s not a conversation, but it is an entry to a conversation. So you need to have that built into your platform. You need to have Facebook, Twitter, and nowadays, Penterest [phonetic], built into your platform so that patients can converse with you; they can have access to you.

You also need to make sure that the content you put out is available for all, and this is our media content. We actually make it a media blog to make sure that we provide appropriate information to our media contacts, now, again, not as a marketing because that’s part of what you need to do as health care providers. I tweet on a daily basis. Actually, I tweeted before I came up onstage, and Mark Ryan [phonetic] wanted me to tell you that Health Care Social Media LA, for those who are interested, HCMSLA, is a weekly chat group on Latino-Americans at Health Care Social Media,

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 11 and if you want to join it. That’s my email address. I blog here on a weekly basis. Thank you. [applause]

[off mic]

JENNIFER SHINE DYER, MD: Good morning. Thank you, guys, for inviting me, and my name is Jen Dyer. And I do have a disclosure to saying that I am a partner and owner of a startup, Duet Health, and the EndoGoddess app, so I am invested in wanting to see that succeed. But really first of all and most of all, I’m a doctor. And so, doing the right thing for patients does trump my invested interests in my company.

But I’m also a health behavioralist with a Masters of Public Health, and that’s really how I approach problem- solving in my clinic and with my patients. And I’m also a social media enthusiast and I really started doing that when I got my Masters in Public Health, really because of like Ferris [phonetic] is saying about the opportunity to give health information and just feeling that it was the right thing to do.

And so, in 2007, I began my public health practicum and started writing online health information so that there is something appropriate and consumer friendly, and that’s really where I started. And I just thought it really makes sense because 83% of adults are searching for information online, and that actually, whenever they get the information, it does affect their treatment outcomes.

And when you look at the prism of trust, social media expert or snake oil salesmen are at the bottom, but doctors tend to be at the top. And in 2009, I started on Twitter, and EndoGoddess came about because all of patients that have diabetes call their specialists their endo, and I had a cute little girl that used to always wear pink and I called her a pink lady, so she called me an endo goddess. So that’s kind of like how it started, and I thought it was kind of cheeky and fun.

So it’s taken on a life of its own, so I have been on Twitter for three years. And in one way, I think that that does produce a trusted source as in your study, that when you have seen someone discussing and blogging and being on Twitter for three years, it’s pretty consistent, I would

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 12 say, like it’s pretty predictable about what kind of person I am or that you can see.

And as far as time investment for physicians, what I do, and I’m a pretty heavy invested person in it, but I only spend about an hour a day, and I’m on Twitter in the morning and at lunchtime and at the end of the day, and I use it all with my mobile phone because it’s really easy. So I might be at the grocery store and standing in line, and that’s part of the time that I am looking on twitter.

And the return on investment for social media is really that actually even the Wild West of the internet, you get to actually control your digital footprint as a social media participant as a physician. You can be a thought leader like coming to events like this and really sharing your passion, and you actually get direct feedback with people. You get an opportunity to share your voice and concerns that you’re talking about day in and day out with your patients. It’s actually really fun, and a lot of new opportunities for networking and doing research and doing advocacy work.

This is a survey sample that was done for meaningful use of social media. And what this sample did is that it looked at primary care physicians and oncologist physicians, and about their social media usage. And what’s the most interesting factor is that age really is not a factor for the most social of the media, which is Facebook, LinkedIn, and Twitter, that there really wasn’t as much of an age correlation. There is an age correlation with texting and email and blogging, but for the really social of the media, there is not really an age correlation.

So I didn’t even have a phone with an app until 2009; that’s the first time I ever knew what an app was. But in 2010, a medical student and I automated with, just programming with making apps for dummies, basically made an app. And it was to automate a protocol that I did of texting with my patients. And then, this 2011 EndoGoddess app we released in the app store, and so, I am a full-time entrepreneur right now, and I’ll just tell you a little bit about that journey.

And just to refresh, in pediatric endocrinology, diabetes is mostly treated, whether type 2 or type 1, it’s always

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 13 treated with insulin. And we do use a lot of insulin pumps. So technology has always been something very interesting to me. And the therapy is a basal insulin and prandial boluses. And what I really noticed is that even though you just press the button, the ACT blue button, to have the bolus, a lot of teenagers just wouldn’t press that button. And I knew that because I would have them download their pump from home to their home computer, they have a USB connection with their meter, and they also have a connection with their pump, and then with Carelink [phonetic] software, I can actually look at their patterns, and I can see every time that they’ve missed their bolus, and they typically were missing boluses about half the time.

So why would they not press that button? Why even though it’s easier than actually getting a shot, even on pump patients, they still don’t press that button? And a lot of times, it has to do with actually kids are worried about their economic condition of their families and that if they run out of insulin, that their parents can’t afford it. There’s also sometimes because of reduced health literacy, but a lot of times, we in the clinic always make a good effort for that.

There’s also an eating disorder called diabulemia [phonetic] where people will skip their boluses so that they can get a catabolic state and lose weight. There’s also a fear of low blood sugars, and then there is a peer pressure. So there are really multifactorial reasons.

So that I really thought was profound when I was looking in the literature and Pediatrics Journal about pediatric liver transplant patients. So this is patients that were born with a congenital defect in their liver like biliary atresia, and then they had a liver transplant at the age of two, and then around the age of 12 and 13, these patients were not taking their rejection medication. They were facing a second liver transplant.

And at Mount Sinai, what they did is they did an automated texting reminder to take your medication, and what, when they got the reminder, 69% actually were taking their medication better versus the standard, which is 50%. And with the reminders, there were only two rejection episodes, so only two liver transplants, and without the reminders,

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 14 there were 12 liver transplants; that’s really profound. And it was just an automated little reminder every day to take your medicine.

And it just makes sense, a lot of the teenagers in my clinic are always texting at their appointments, and the typical teenager sends about 50 texts a day. And the demographics of teen cell phone users has a lot less disparity than most other ages. With poverty income, about 60% of the teenagers have a cell phone versus over 75,000 a year where 87% have cell phones. And most of the teenagers have unlimited texting plans. Their parents don’t have unlimited texting plans, but their kids do.

And what’s really interesting is that 87% of African- American Hispanics own a cell phone, and Hispanics group is actually the one that uses the internet access on their cell phone more than any other group. So it’s really an opportunity to reach people where there is no time limit on the computer at the library.

So I hypothesized that a personalized and interactive engagement, basically friendly nagging is what I did with my patients, I did it once a week, and I thought, I hypothesized that it would make their hemoglobin A1C better.

So what I did is I gave an initial greeting and I did, this is what I did just texting with my phone, got a HIPAA waiver and talked to the parents and they were all, I said, can we, can I text your patients, text my patients, your teenager once a week for three months? And they’re like, please, because they were so frustrated that they wouldn’t take their medicine.

So I would give a customized question, this is the personal aspect because I think the personalized engagement is the friendly nagging; at least I use it with my husband to take out the trash, say, you’re so strong, will you take out the trash? [laughter] So that’s basically what it is. And then, I would give the specific questions for diabetes, so I would say, how are your blood sugars? Are you having highs? Are you having lows? How are you doing with your boluses? And then, I’d give them an inspiring quote or, keep up the good work, you might have had a hard week but you can do it, something simple like that.

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 15 And what I found with my patient group is that their initial hemoglobin A1Cs were in the 10-11 range, which is what I typically see in teenagers that are not pressing that button. So they’re not in the 14 range because they’re getting their basal insulin, but they’re not getting their boluses with their meals, so they’re getting a lot of highs after that. And what I found after three months of texting is that their A1Cs dropped to 8-9%, so that is very clinically relevant, and that they are much less likely going to have problems with peripheral issues with diabetes.

And so, I, on Twitter, got really excited and said, oh, yay, my little pilot study is working out. And a medical student said, hey, I used to be a programmers; I’ll help you. Let’s make an app together to automate, because not every, I have over 200 patients, so I couldn’t text everybody on one day a week, so I needed a way to automate it.

So what we did is we used some external sources that are all free. Twillio [phonetic] is how you actually use the coding. And what we did was a coding called PHP where basically it’s an, if you enter this, then it automates a sentence, and that’s kind of what we did. And then, all of the database for the texting automated, and all of the conversations are recorded on an external database, so it’s not actually recorded on the phone, so that you can access it and it won’t be lost.

So I’ll take you through this actual simple app that we made, apps for dummies. And what it is is that the doctor would need an app and a Smartphone, but the patient would only need a phone that takes texts. So the app is really for the doctor. And it is to enter in the social or the personal information, and then it automates sentences out of it, so you add the patients like you would add anybody a contact on your phone.

So we will use a sample of Nick Jonas because he has type 1 diabetes. And the social cues, so you would enter, and actually, I do this on my progress notes, say like this is what we talked about at the appointment, and then I walk into the room and say, how was your prom, or whatever we had talked about. And I don’t really have that good of a memory, but my pediatrician used to do that; I thought it

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 16 was so, wow, she remembers everything. So that’s what I do. So I could just take that information and put it in this app.

And what happens then is whenever you finish it, then it goes out Nick and it says, I’ve just added you. And then, whenever you look on the app, then it has everything that’s automated, ready to go, about the social cues that I just mentioned. So once a week, however many patients you want to add, you just send out the cued messages.

And basically, the messages would go out and it’s 5:00 on a Thursday, he’s pumping gas, Dr. Dyer here, - - on the new album is going well. Then again, he’s at a concert: hey, how is it going with the boluses? Hey, I hope you carb counting is going well; I know you like those Frappuccinos, et cetera.

But what I interestingly found as I kept texting my patients is that actually their adherence started to drop, and that was at about the sixth month mark. I was still texting them. And I asked them, well, what’s going on? And they said, well, once a week is not enough for me; I need motivation. I don’t want to have diabetes, and I just need more support. Sometimes my parents just don’t feel, they don’t know how hard it is.

So actually, I teamed up with eProximity, and then we created Duet Health. Duet is the basis of the doctor- patient relationship. And we created a new app, and the EndoGoddess app is a totally new different way of approaching the problem. And so, instead of pushing the button and bolusing, target engagement behavior is the glucose checking because in my experience, I feel like that’s the hardest behavior to do with diabetes. It’s the most inconvenient.

And so then, once you do the hardest behavior, then you’re more likely to do, take your medicine and do the other behaviors, and that with motivating, educating, and triggering with the app, that that will help sustain that behavior. That’s based on VJ Fogg’s [phonetic] health behavior model, that if a technology provides a motivation, a technology provides a high literacy of the behavior that you’re trying to focus on, and then it reminds you to do

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 17 the behavior, that that is the triple aim of health behavior.

So literacy, what I mean is that the mobile phone would give you content when you need it. Frequently, you use links and mobile videos; and then, triggering sending you notifications, calling, emailing, all kinds of different media that you could choose from; and then, that it provides gamification [phonetic] motivating and competition and socializing. So I took the plunge and started and became an entrepreneur. I used my little dummy app programming with real programmers that are Ohio State College kids that we’ve now hired at eProximity.

So I did that over the Summer, and then the most thrilling moment is actually submitting the app to the app store, and it’s downloadable for 99 cents in the Apple and Android stores. And what it is is a journal, so it’s really, as I mentioned, the target behavior is checking your blood sugars. So checking your blood sugars, it serves as a journal. But it gives you points for whenever you check your blood sugar.

And what happens when you check your blood sugar and you get a certain amount of points, you can download a song from iTunes, so it’s a reward motivation. And it’s also a social business model, so you have all of your friends and family that are the ones giving you the money for the iTunes, and 99 cents for a song once a week actually really motivates people, not 99 cents cash but 99, or teenagers, especially, they were so excited just thinking about this idea. And then, the grandparent says, well, how are your sugars, at the holiday gatherings because the grandmother maybe gave them $5. And so, that’s really part of the motivation and support, too.

And the trigger is also a reminder on alarms, and then literacy gives you information about how to get involved with social media. There are a lot of diabetes chats that are going on, and whenever you look at how many diabetes apps are out there, actually in the Spring of 2009, there were 60; Spring of 2011, 260; and Fall of last year, 338. When you look at what most of the features are, they are communication about information, insulin medication journaling, but very few have about actual education and

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 18 social media alert reminders and portals. So that’s, and none of them have the motivating gamification.

So what is the future? I’m trying to raise money to get a randomized controlled trial to say that it really does improve outcomes. We’re doing an EndoGoddess kids app, so that the young kids can, kind of like the Tamaguchi [phonetic] Digital Pet where you can feed the pet if you do the behavior, and then, you don’t, the pet dies if you don’t; and then a partnership with a medical device, maybe getting your prescription renewals through the phone, partnering with electronic medical records so that everything can be HIPAA compliant, putting advertisements, this is all being figured out what the business models are.

I’m blogging my journey in Mobile Health at EndoGoddessBlogSpot.com, and in conclusion, really, the most exciting breakthroughs are not really going to occur because of technology but because of what it means to be human, and friendly nagging, and things that we do all the time. So this is my email address. This is me in fifth grade. My Dad caught me making a to-do list with my ET doll. [laughter] So thank you. [applause]

MODERATOR: Well, that was exciting, three very different takes on how to do the interface that’s going on and so exciting in this area, and really getting to health outcomes. So congratulations to all of you. At this point, we’ll take questions, so there are mics available, if you could approach the mic and let us know who you would like to address your question to.

MALE VOICE: Good morning, Dr. Aresa Stevis [phonetic] from New York. And I want to thank you for the presentation and it was excellent content. I do have a concern though about something that Dr. Tamini [phonetic] raised, and that is the use of, okay, direct to patient advertising, if you will, by physicians or by pharmaceutical companies or by technology companies, without having the research behind, and you see so much on the internet of unproven new tests, new gene tests, new serology tests, new Breathalyzer tests, but there is really no concrete peer reviewed literature or study or research. Could you share some of your insights on that and address that issue?

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 19 DR. TAMINI: So I think that’s an excellent point. I’ll give you an example. So I have a four- and a five-year-old, and we see our pediatrician every Spring, and the one thing we always talk about in that appointment, whether I want to or not, is vaccine hesitancy because my wife has concerns, and we spend a good five, ten minutes of that encounter talking about the risk regarding the vaccine.

And the reason that conversation occurs is because as a provider, as a group of providers, we have not taken our moral obligation to put good content online, and everyone else has. So we’re not recognized as the experts on vaccines anymore. The celebrities are, and it’s because we have not made a concerted effort to ensure that we’re a part of that conversation. Those conversations occur whether we’re part of them or not. That peer-to-peer encounter we were talking about, that’s occurring right now; that’s where patients are going for their health care information.

And if we don’t make a strategic effort to populate our footprints effectively, to put good reliable content in the hands of our patients, then we have not done our moral due diligence and we’ve ceded the high ground to everyone else, to those pharmaceutical firms who may not have the patient’s best interest at heart, to the marketing firms who are advocating for something other than the patient’s best interest, for the patient’s bottom line or wallet. So I would argue that the response of that should be we as providers, should ensure that we are putting good content in the consumer’s hands, and not relying on it occurring independently because it is happening, whether you’re part of the conversation or I am or not, it’s happening right now.

MALE VOICE: Thank you.

DR. TAMINI: Absolutely. I’m sorry, I get missionary-like about it, I apologize. [laughter]

[off mic]

FEMALE VOICE: Good morning. I am Dr. Cella [phonetic] from Chicago. I really loved the presentations. My question is to Dr. Shine, Jennifer Shine. Have you, I know you’re working with adolescents. Have you thought about developing similar kinds of application and effort for

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 20 elderly patients, so at least over the age of 60, which I don’t believe they’re elderly yet, but anyway, that there is a myth that elderly and older, 65 years of age and older are not using the mobile phone and are not familiarized, and the data indicate that 50% of the population in general actually are not taking their medication, their prescribed medication? So there has to be some kind of mechanism to remind them or alert them on a timely basis and maybe teaching those, I’m thinking about them in particular because of all kinds of reasons, maybe because I’m in that age group, but anyway, [laughter] but I mean, it would be nice to be able to explore those options and to even test them.

DR. DYER: Thank you for your question. Yes, definitely, it’s an area, so talking about young at heart, but older in age, right, actually, that’s a group that’s growing the most with social media and mobile health because they want to be in touch with their grandkids. And grandkids are only going to talk to them by texting; they’re not going to talk on the phone. They hate talking on the phone. They don’t email. They do Facebook if they’re old enough, but they really like texting the best. And Facebook is a great way for grandparents to get to see their pictures and to share their pictures with their other friends.

And so, actually, there are quite a large number of grandparents that are getting iPads. But it is an area that I’d like to explore at one point, but one of the limitations is that a lot of grandparents or older people don’t tend to have an unlimited data plan. So I don’t want to add more expenses, so that’s why I haven’t really ventured into that quite yet and have been working more with the younger population because of their unlimited texting plans, and that they tend to have Smartphones more often overall.

And what’s interesting about diabetes is that actually for the kids, having diabetes made their parents want them to have a Smartphone more than children that don’t have diabetes because they wanted them to have all of the tools that they can have at their fingertips. So I actually did a survey with the parents and the kids about what kind of cell phones and data plans did they have, and the parents have sacrificed a lot so that their kids can have the best phones and the best data plans, and they’re carrying around

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 21 really old cell phones because they want their kids to have really good ones. And a lot of people actually are getting iTouches, which are much cheaper and they don’t have a data plan, but they have the internet access.

And so, that’s actually another tool that I think would be great for older people that don’t have to have a Smartphone but can have like all of the apps and all of, at a cheaper price and not have the data plans. But it is something to work at for the future, and I definitely, I do think there was a recent study with using social media and telemedicine in older adults, that it does change health outcomes.

FEMALE VOICE: Hi, my name is Beatrice Mallory [phonetic], and I’m from New Jersey. And I have a question, well, first of all, I have a comment in that my 74-year-old type 2 diabetic mother is the biggest angry bird’s fan [laughter] of all time, and she beats me endlessly at Scrabble also from her phone. But my question is for Dr. Tamini: when you had to make the business case for investing in all of the efforts that you’re making, I recognize a lot of them are really low budget—

DR. TAMINI: Right.

FEMALE VOICE: —with big bang, but you had to at some point have made a projection of ROI. Can you talk about how you did that?

DR. TAMINI: So you’re right, the majority of the tools we used are platform tools that are readily available and quite inexpensive. And we’ve seen more with a flip camera and a YouTube video than you would anticipate. For example, again, a pediatrician because I’ve got a four- and a five- year-old, so when we see our pediatrician, one of the things we do every Spring is talk about how to pick - - right, how to make sure it’s - - over the ears, it’s flat here, you can fit one finger breadth beneath the chin. Now, if we just filmed that conversation and placed it on the YouTube Channel for our community to see, how many kids will we save, who may not get in to see the doc that Spring, from a catastrophic head injury?

So the ROI we used to justify this is the ROI of not participating. I mean, I think the risk of not being a part of this conversation from whatever perspective you’re talking about, be it as simple as brand recognition and

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 22 marketing if you’re talking to the marketing end of your practice, be it the capacity to recruit research candidates if you’re talking about the research part of your practice, be it education. For example, one of the things I’m working on right now is I direct the medical residents who rotate through our hospital service. My biggest boundary is the overnight intern because he or she shows up at 6:30 and they’re gone by 8:30 in the morning, right? My consultant comes in at 8:00, 8:30 in the morning; that’s two hours of education. That’s not education; that’s cleaning up and getting out.

So what I’m building is a series of Kahn [phonetic] Academy PowerPoints with audio overlay for the nighttime intern to use with a social media sidebar so they can communicate with me asynchronously. So if you’re talking about education and not using these tools, you’re not availing yourself of it, and for clinical practice, the reach is ridiculous. And truly, the tools people are availing themselves of right now are this most basic and simple tools.

Talking about adoption rate, 65 and older, it’s 42% right now are online using social media platform tools, and they’re the fastest growth reflecting the fact that they’re the ones who are on there initially. But the growth acquisition is incredibly fast, and it’s all peer-to-peer; it’s all peer-to-peer.

So we did a study looking at our patients who had a heart attack at the clinic, our employees, their one-year compliance with aspirin, beta blocker, ACE inhibitor, and a statin was about 50%. And what happened was they’d go home and talk to their friends, either online or wherever they were chatting, and saying, gosh, you know, I’ve got a backache, and someone would say, well, maybe it’s your statin, you know? You ought to think about stopping it.

[off mic]

DR. TAMINI: And there’s nothing wrong with that conversation occurring, but if we simply put content by saying, look, dude, you’ll lower your death rate 20% if you take this particular drug, what kind of conversation will we have? What kind of outcome will we have regarding our own employees and their survival, let alone if we make that

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 23 publicly available and we change and leverage that for the entire community or online? I mean, this is our moral obligation as providers to put good content in the hands of the consumers who need that content. And so, the ROI of not participating is truly profound.

MALE VOICE: Good morning. Can you hear me? Ricardo Gonzalez Rossi [phonetic] from Florida State University. I want to thank you for this very interesting workshop. I have two questions that have always troubled me a little bit, and I thought maybe you could maybe extemporaneously comment on it.

One is the phenomenon of extinction; that is, when you keep reminding somebody about taking out the garbage every ten minutes, after a while, the Frappuccino story gets real old and you turn it off. If I was a teenager and I knew that Juanita was texting me, telling me that Alisa [phonetic] was really hot for me and wanted to see me at the track meet, I may pick up that text message, but after a while when it becomes really, and just to give you an example, the physician order entry in many of the, I worked for the VA Hospital for a number of years, after a while, that reminder, the patient’s creatinine is such and such, you just click it right off. So that would be one thing I’d like for you to comment.

And the other one is the very real issue of information overload. I think we are so, we were talking about yesterday at the diabetes symposium that kids who are watching TV or doing something for over two hours are more likely to be at risk because they’re sitting around. I end up spending a lot of my time looking up my emails. So information overload and extinction, if you would comment.

DR. TAMINI: Do you want to start?

DR. DYER: Yes. Thank you for your questions. So your first question is about how do you address message fatigue is kind of what that idea is that where if you nag too much, that you stop listening. And I don’t know, I agree that that is, that’s why I started my texting doing it only once a week because I didn’t want to be too much, but then they said they really wanted more. And the average teen texts 50 times a day, usually more than that, about 100 texts a

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 24 day, so they are used to filtering information in a way that I am not as used to filtering information.

That makes me feel that message fatigue is a little bit less of a concern than it is for me because I get, at least with texting, and it has to do with the medium, at least for teenagers, that’s just the medium that they prefer. And they really, it’s interesting how much they hate talking on the phone. So you can’t even say anything on the phone because they’re not going to listen. But they will actually look at that text. And to me, I like to listen on the phone more, so when I see the creatinine reminder on the physician order entry, or all the popup things, I just go, oh, you know, just go past things, and I know what you’re talking about.

But it is something that should always be assessed with message overload and message fatigue. But so far, we have not had that with teenagers.

DR. TAMINI: Okay. That’s only one thing. So remember these are archived resources; they don’t go away. For example, one of our pediatricians sent a video for us about POTS, about possible [phonetic] orthostatic tachycardia syndrome. It was Phil [phonetic] talking about what he typically told the family when they walked into clinic; it’s about six minutes long. It’s been downloaded on YouTube 50,000 times. And if you don’t have POTS, you don’t really care about watching a pediatrician older than I am talking about POTS.

But for 50,000 people who wanted a deeper conversation, that content is still there four years later, and we still get emails from patients who never come to the clinic for medical care. We got an email from a family in New Jersey that said, look, thank you for putting that online; I found it embedded in a child’s blog who looked like my daughter. I was able to take it with me to my pediatrician and tell them, this may be what’s going on with my daughter. Thank you for having this resource available. And it’s four years old.

So it’s, part of it is extinction but part of it is making sure the correct content is available, it’s archived, and people will look for personalized information to meet their particular need.

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 25 DR. DYER: One last thing about message overload and emails and all the, you know, how do you filter information, actually, being a curator of information is exactly what we do as doctors. That’s what we’re the best at doing. And that’s what actually I think most participants in Twitter that are doctors, that’s what we’re doing, actually, is curating the information that is good information or the information that’s dispelling myths about bad information. And it’s a great utility in the sense that all of my nonmedical friends are always asking me, what’s this H1N1 and all this, and it allows me, Twitter allows me to say exactly what I told them and use a study, link to a study exactly what I told my friends and family so that other people that don’t have a doctor in their family can benefit from that, too.

FEMALE VOICE: Thank you. - - and I’m an adolescent physician so I appreciate a lot of the teenage approaches, from Miami. I just wanted to bring up something that I’m curious, maybe Mayo Clinic, legal issues, so what if, I don’t know, a teenager, there’s a Twitter and you didn’t catch it or you were away on a leave and something happened? On the YouTube, the pediatrician didn’t say something about the helmet and something happens. And unfortunately, we live in a really medical-legal world, and we have to be concerned about that. Thank you.

DR. TAMINI: Right. So there are a variety of responses. First of all, you’ve got, you have to provide adequate training for your employees. They have to be trained appropriately. Secondly, there’s got to be a social media guideline for your institution so they can refer to it, and it needs to be well articulated, easy to understand, and easy to apply. Third, those same concerns apply to everything else, so what if you, when someone leaves a phone message Friday night, you didn’t get it until Monday, and they called and said, I’m having chest pain, should I go to the hospital or not, and they died over the weekend?

So those things sort of, encounters always occur in asynchronous information transfer, and you can have a disclaimer so that people understand, this isn’t medical care. So I tell my employees don’t lie, don’t pry, don’t cheat because you can’t delete.

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 26 And literally, unless it’s in your cache, it’s, you can’t get rid of it. Don’t steal and don’t reveal. I mean, you follow those fundamental precepts, and then, as an extension, no matter how good your intent, don’t practice medicine on the internet because you really can’t, you’re not there to practice. So I often get Tweets from patients saying, I’m having an issue, and I’ll tell them, here’s my, my contact information is in my profile; I’d be happy to see you in clinic. But I don’t practice medicine online.

And the last thing is HIPAA always applies; it doesn’t matter where. And the most common HIPAA violation occurs in an elevator, people chatting in an elevator when they shouldn’t be, so as long as you provide appropriate orientation and training, and provide appropriate guidelines for your employees so they understand the issue, as long as you have disclaimers, for example, mine says I’m tweeting for myself, not for Mayo Clinic, and as long as you don’t practice medicine online. I think things will happen; that’s just the nature of any kind of engagement. There will be mistakes, but if you’re prepared for them, have a response plan in place, monitor appropriately so you can respond in an appropriate fashion, you’ll deal with them effectively.

The last thing is you don’t let an error make you stop. This is baseball, you know? You lose a game on occasion. You get up, play again. You learn from your mistake, you apply what you’ve learned to your platform and you move on. But that’s how I’d respond.

DR. DYER: I just wanted to add to that, how many of us have had somebody at the airport ask us, oh, you’re a doctor, when they see what you’re reading, and, can I ask you a question, and they say, should I take Tylenol or Advil, [laughter] or something like that, and I can’t, I’m not their doctor, I don’t know what their creatinine is, I don’t know what their liver function is, so I can’t even answer should you take Tylenol or Advil. And so, I really don’t answer that question at the airport and I never ask, answer that question on social media.

So it’s the same principles of not practicing medicine in real life and not practicing medicine in social media. But what I can do is say, okay, why are you asking me about Tylenol, Advil, and they’re like, well, they might say,

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 27 well, I just want to know which one is healthier. Then I would give them a good question to ask their doctor to say, oh, well, Doctor, should I use Tylenol or Advil, what’s better for my liver, what’s better for my kidney? So I could arm them with some information of a question, and that’s actually powerful that they can get the answer that they want, and I’m not violating anything, but I’m actually helping them.

DR. TAMINI: So I just wanted to say that I normally read murder mysteries when I travel, so if you stop me in the airport for murder advice, I really can’t help you. [laughter]

[off mic]

MALE VOICE: Jose Rojas [phonetic] from New Jersey. Would you just - - a little bit of which media you have found to be most beneficial from your experience with those who are health care literate?

DR. TAMINI: Yes, I can tell you the majority of people who are health care illiterate, so we’re talking about a fairly select group, there are those who don’t have broadband access or have it only at work who, as an aside, just as a side note, I believe one of our jobs is to encourage and support access angels [phonetic] and communities, like libraries, like houses of worship, who offer free or limited broadband access because the penetration is profound. And studies have shown that if you don’t have real internet access, you suffer financially, you suffer from chronic health care recovery. So I think part of what we need to do is support our local library because it makes a big difference.

But also, one of the things that are most - - what you alluded to, is mobile penetration in that population is extraordinarily high, often 70-80%. So it’s critical that your health care information that’s available online be m- capable so they can access it more effectively.

As to which platform, it really depends on the specific operational need you’re trying to achieve. Twitter is probably the easiest of the four food groups for most providers to access with limited time constraints, and allows for the most flexibility. But you’ll get more educational values with a food chain towards YouTube and blogging. So it really depends on the operational need,

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 28 the providers wanting us to commit time and resources to address that need, and the patient need you are trying to match, and making those three merge appropriately.

FEMALE VOICE: I’m Dr. Sorla Illa [phonetic]. I’m a family doctor in LA. And I just wanted to ask again because it was - - was the name of the social media website in LA. That was you.

DR. TAMINI: Me? I’m sorry, which one?

FEMALE VOICE: Health Care - - .

DR. TAMINI: HCSMLA. So it’s the hash tag for a weekly tag. That was tweeted back to me from Mark Ryan who is a family medicine doctor as well.

FEMALE VOICE: Okay.

DR. TAMINI: In Ohio? Is that where Mark is at? I can’t remember.

DR. DYER: No, he’s in D.C.

DR. TAMINI: Is he in D.C.?

DR. DYER: Yes.

DR. TAMINI: Well, then maybe he’s out here somewhere. [laughter]

DR. DYER: So actually, if anybody is interested, every Sunday night, the HCSM is Health Care Social Media, so if you use the hash tag HCSM Sunday nights at 9:00 Eastern Standard Time, there is an organized moderated chat that goes on every single Sunday night, and it’s all, that’s actually where I’ve seen - - before and it’s a lot, it’s been going on I think for three years.

DR. TAMINI: Three years, yes.

DR. DYER: Yes. And it’s basically addressing questions as they come up in all of these issues that we all face in medical practice. So it’s a moderated chat that lasts an hour.

DR. TAMINI: And also, I would encourage you to take a look at SYMPLUR, S-Y-M-P-L-U-R, which has a hash tag calendar for Twitter chats that are health care related. There’s a great one on Wednesday and Thursday night called MedEd. It’s program directors across the country taking about

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 29 resilience, internet burnout, how to prepare for the upcoming match, and it’s amazing how specific many of these chats can be. They really can address very germane issues, and it’s a good way to get involved in the platform and get some comfort with it as well. I’m sorry, I’m meandering. Please.

FEMALE VOICE: No, that’s okay. Just a quick question about as we start to study this, I was trying to use a texting way to do some work with my research and the IRB said, uh-uh, not secure, we’re not going to do it. So do you have any tips about, I know we traditionally have a very conservative IRB, but any tips about how to approach it from that perspective?

DR. TAMINI: Yes, we’re working through the same issues of the clinic. For example, I’m being told over and over again, you can’t have people send PDFs back to the portal; faxing is more secure. And the fax machine sits in the middle of an open work area with everyone having access to it. So you have to work through those issues through your IRB; there is no shortcut around it. And quite frankly, if you want to recruit patients to the current era, this is how you do it.

So one of my colleagues wants to do a study looking at pain perception in rheumatic disease because he says, he just told me, look, patients who have rheumatic illness, they’ll look fine but they have significant discomfort. And there was a discrepancy between the provider’s perception and the patient perception. He wants access for a survey to a large number of patients. So one of the people we know on Twitter has a listserv with 13,000 people on it. Now, you can argue with me whether they all have rheumatic illness or not, but you can say that for any patient population you’re working from. But where else can you access 13,000 patients in 30 seconds or less with a tweet?

So if you want to study these patients or engage these patients or educate these patients, they’re there. And the last thing is this patient, I mean, this person who has 13,000 patients on their listserv, she’s a patient; she’s not a - - .

DR. DYER: My experience with, when I did the pilot studies with the IRB, we have a pretty progressive IRB in that sense,

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 30 but in my fellowship project, I did, I put IVs in newborn babies, two of them, like one as a standard and the other one for research that I did IV glucose tolerance tests, and the IRB approved that, and here, we’re just talking about texting, right?

FEMALE VOICE: Uh-huh.

DR. DYER: So I think that one thing that you can do is look at some of the most successful studies such as the Mount Sinai study that I mentioned about pediatric liver transplant and get in touch with a researcher and see what they said to their IRBs, maybe have three examples of that and say that these are some successful studies that have really changed health outcomes, and this is what their IRB protocol was, and that they have since not had any infractions or something like that.

MODERATOR: Okay, we’re going to take one last question before our wrap-up?

FEMALE VOICE: - - and I have done Hispanic community outreach and education in community health centers, and I’m writing for Hispanic Link [phonetic] News Service. What has to happen systematically for this to be adopted throughout the country so that it becomes a protocol and has a comfort zone among the patients?

DR. TAMINI: Among the patients or the providers? For the patients to be comfortable, we’re there [phonetic].

FEMALE VOICE: Both to providers, well, both to providers and, for example, we did a lot of work - - et cetera, how do we make this a systematic rollout?

DR. TAMINI: I think I have seen a profound growth just in the last 12 months.

DR. TAMINI: I mean, I went to American College of Cardiology recently and the number of cardiologists tweeting was a profound increase from just a year ago. I think there has been a groundswell of recognition that in order to empower, engage, and encounter the patients who are there, we need to have providers who are willing to place good content and do so in an effective fashion. I think I can’t stress enough the need for clear training for employees; clear

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 31 articulated social media guidelines for institutions because without those guidelines that govern interaction, you’re not going to have employee comfort and participating; and I would stress again the profound impact of access in your institutional bandwidth, be it a division, department, a hospital, for engaging and improving outcomes. It really is quite striking. But I’m not sure if I answered your question.

DR. DYER: I believe that with the Affordable Care Act starting in October of this year, penalties for hospital readmissions, and changing the payment paradigm to reward prevention of those readmissions, that social media payment for doing that and for communicating with your patients in a way that’s the best and most effective at changing health outcomes, I happen to believe that that will happen one day because it makes sense; it changes health outcomes. And at the focus will be on rewarding providers for providing that service that helps keep the patients out of the hospital and helps keep patients healthier. And that is the paradigm and the structure that needs to happen for the rollout that benefits patients the most and that—

DR. DYER: —health care providers are compensated for the time that it takes to give the best care that they can for their patients.

[crosstalk]

FEMALE VOICE: And does that extend to the hard-to-reach?

DR. DYER: I think it should, yes, and the Promadoras, [phonetic] right—

FEMALE VOICE: Promatoras [phonetic].

DR. DYER: —Promatoras, that that is the best way and that they should be compensated for the actions that they are taking to help prevent hospital readmissions.

MODERATOR: I just want to roll up and add to that, go ahead - - .

FEMALE VOICE: - - can you hear me? Is this working?

MODERATOR: Yes.

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 32 FEMALE VOICE: Just because I worked with or interviewed the parents, the patients that you’re speaking about, I think it’s important, they want to hear from you, that we found that they want to hear from their doctors, and they want it to be a personal thing. They don’t want it just from somebody that’s out there.

So you need to let them know also that it’s available, not just put it out there and hope that they stumble across it because like I said, they don’t have the time necessarily to go searching. And if they do, they’re lucky if they come across your stuff, so let them know that it’s there; communicate with them that it’s going to be coming out. Let them know when they’re in your office: hey, you know, now we’re going to be, we have a Facebook or check us, check for us on YouTube every once in a while, especially if this is a concern, so that they know that they can find out and they can get that information. Otherwise, they may never come across you and you’re just doing it and it’s not actually benefitting anybody.

MODERATOR: And I think to also just wind this part up, we didn’t get time to talk about analytics, and I think evidence based information is really important. In the social media world, we would like to, at some further session, be able to look at what are the analytics going on here, how are you making your social media decision processes, how effective, what’s the safety and efficacy issues, so lots more I think to come in this emerging area, and I think just to add to that last comment, when HHS is adopting social media, which they are, I don’t know how many of you are familiar with Text For Baby [phonetic], but Text For Baby has been a very successful model that HHS is using, when we see government stepping in and creating these platforms, we know we’re on an emerging climb to a new exciting area. And I thank our most competent and experts here today for sharing their wisdom and their experience. Please join me in applause for them, [applause] all of the work that they have done as leaders in the field. I also just want to remind you that you have a luncheon and plenary session in the Thurgood Marshall Room. Dr. Carmona is going to be at that session and that’s at 12:45-2:00. Thank you for your attendance at this session. Hope you enjoyed it. Have a great day.

[crosstalk]

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 33 [END B2.MP3]

NATIONAL HISPANIC MEDICAL ASSOCIATION B2: Using Social Media in Medicine More Effectively April 28, 2012 34