Health Activists Influencers

In this exclusive video, Jack Barrette, WeGoHealth, discusses how working with health activists can drive your marketing forward.

Video Transcript

Jack Barrette: So Amy Gurowitz, a very well-known Multiple Sclerosis Health Activist from MSSoftServe.org and other sites I may add–thank you, sir.

Male Speaker: You’re welcome.

Jack Barrette: Jennifer Shine Dyer, one of the few physicians at the conference who’s been here and spoken to us before but also very much a participant in the online patient community @endogoddess, I just like your Twitter handle. So I use that as a website. And Catherine from Diabetes Etcetera and asweetlife.org. Catherine Price who’s another diabetes activist. So I’m excited that you have in this group. Yeah, well, this is 3 people. Two Diabetes people and MS but this isn’t representative but MS and Diabetes are some of the leading patient communities online and look at them as the evolved state of where RA and Oncology and other conditions are going and, you know, we were kidding before that literally folks say, why, I wish there were like Diabetes when I–in my community. What they mean is this is such an empowered, such an active community, you know, Amy I was talking about the case where patients rose up and demand that _______ [00:01:02] be kept on the market despite the fact that there was a side effect of death for people who were–had certain types of pre-viral conditions. So this is a very powerful set of communities that we can learn from for other–and all diseases. So that I’m going to ask Amy would you start and just tell us just a tiny bit about your work and how you became an activist?

Amy Gurowitz: Yes. Hi, everyone. Thanks for being here. My name is Amy Gurowitz and I have had multiple sclerosis since 1988 which gives me a great perspective for what the digital world offers us that being that there were–there is no internet at the time and there were no drugs to treat MS specifically. So I’ve kind of lived through a really important progression that not everyone has a perspective of and I really love the MS drugs. I think being without them for 5 years makes them extra special and I have a very different feeling because there weren’t choices, there wasn’t anything approved and so it gives me the perspective. I founded the non-profit organization MSSoftServe.org and we’re at a fundraising stage. It’s a customizable learning for people with MS because MS is one of the most variable diseases. Every person you meet who has MS, if you know anyone with MS is a different version than the next and so trying to learn about your MS can be incredibly overwhelming at best. And you learn about symptoms that you may never have to experience and this site will allow the–it to be patient focused or user directed and offer control in learning what–how you learn and it will also be a place to teach the people in your world, in your family, your friends about your version without freaking them out too. So that’s what I’m working with.

Jack Barrette: Thank you.

Catherine Price: I’m Catherine Price. I was diagnosed with Type 1 Diabetes such as the autoimmune form of the disease when I was 22. I was a senior in college, so I was old enough to know what life is like before I had to be my own pancreas and it gave me a great appreciation for my pancreas. So anyone who doesn’t have diabetes in the audience just give your pancreas a little thank you because it’s doing things right now. They are amazing. So anyway, so I spent the past 13 years or so trying to be my own pancreas the best I can. I’m very technologically receptive so I have a continuous glucose monitor that, you know, I have a sensor in my stomach that this tells me my glucose every 5 minutes. I calibrate it all the time with my actual glucometer. I have an insulin pump in my–I’ll just take it out. We’re friends here, in my bra. That’s giving me insulin right now and I try my best to stay on top of my care. But at the same time it’s incredibly challenging and I think that there’s a lot of room for improvement in all sorts of different areas. Professionally, I’m a journalist, actually. I spent the past 13 years doing a lot of health and nutrition writing and among other things but I’ve been finding them my professional life and my diabetic life have been kind of converging more and more recently which is really exciting for me because I don’t really want to be an expert in diabetes but I am. And so it’s nice to actually have an outlet to try to use that kind of unwilling amount of knowledge that I have to actually improve things for patients, for diabetes and for other diseases.

Dr. Jennifer Shine Dyer: So I’m Dr. Jen Dyer and other than being an entrepreneur as I spoke about earlier, I’m a physician in practice and private practice in Columbus, Ohio and it’s a physician owned group of 3 doctors and 1 nurse practitioner and we take care of kids with diabetes as well as other endocrine problems and we are part of an accountable care organization. So we get rewarded as physicians for keeping our patients out of the hospital and particularly for type 1 diabetes, we use–it used to be the standard of care to admit patients to the hospital even when they’re no sick to teach them about insulin and we keep our patients out of the hospital and talk to them hour upon hour whenever they leave for the evening and we keep them in their beds safe in their homes and empower with information to be able to live with diabetes and I love being a doctor. I just–I love my patients and I love being involved in the diabetes online community and I refer–I almost write a prescription out to be part of the diabetes online community because there’s a lot of healing that comes from just another 5-year-old seeing another 5-year-old in the office that I, as their doctor, can’t give them so I like to give them hope by meeting other patients that they can live a great, grand, full life and diabetes doesn’t have to stop them.

Jack Barrette: Well, thanks. I think you all can see why but let me give you a little more reason why you should pay so much attention to these folks and why the idea of the patient health activist that the empowered patient movement is so important you all in the room. This is Charlie Safran kind of stating We Go Health Mission in his own words which is that as we look at everything we’ve talked about ECA and reorganization of the sales force and marketing programs that, you know, patients are still the most underutilized resource. They are the best chance to really change things and embracing them and working closely with people like you see up in front of you is a chance for all of you in the industry to really transform the way that you do your jobs for the better. I can’t tell you how rewarding it’s been for us to be bring other groups that health activist inside the walls of pharma companies and have them become parts of teams and really change from an audience to a collaboration partners. So if you take nothing away, think about how you could bring folks like this into your office on a regular basis and welcome them as colleagues and as partners. They are pretty powerful partners. Like this is a research we’ve done on We Go Health in a rolling basis since we are founded about 6 years ago. On average, each health activist reaches about 15,000 other people every single month. So each one is an effective–say, some journalists. They do it because they do want to help other people and raise awareness. These aren’t just the patients who are saying I’m going to make myself better using an app and be technologically enabled. They’re saying I want to support the DOCS as Jen said. So it’d be on my community. Other multiple communities–of course, they’re doctors right, so if you want to trial your app, you would try it out with them. Because they’re more likely to have tried the other apps already and tell you what they think. A very powerful community. But we did–we’re doing an on-going–another role in research behavioral intense study that’s designed again, to get the industry say, yup, we’ve just got to work with these folks. 85% of patients now–these are not activists. This is the people who read the blogs and Facebook pages that these guys create. Say, that they–the social media plays a role in their healthcare decisions. 85%. Using the Nielsen stat’s 84% say that other people’s opinions are the most trusted form of advertising, way of even professional journalism at this point. The same study shows that 77% of people agree that when I–someone I see is influential posts relevant health information, I’m likely to ask my doctor about that information. That’s really compelling. That’s 3X at least the best advertise stat I’ve seen. That’s real kind of ROI, this is okay, take it to your boss and say this is why I need to work with these guys because they inspire conversation–they inspire our collaborative relationship with physician and that’s all we can ask because the patient’s going and talk about our product with their doctor. Oh even MM&M is saying, look, they’re becoming the new key opinion leaders. We love the idea of, you know, patient KOLs, the new KOLs because it helps industry to understand just how important these guys are to how we can change healthcare together. So it’s savvy, influential patients have pharma’s attention and their growing relationships with industry, online and off. So if you’re in these bases, mean those folks, if you want to meet someone in your therapeutic area that you should talk to and be inspired by, I’m happy to give you examples of people in our membership that are–and each one of these can–in your condition, no matter what your condition is. You know, we go health fast commercial. We’re member benefit organization.

We try to organize very loosely the folks that you see at the table and 64,997. With things like the We Go Health activist awards which recognizes people who do a great job but also webinars, scholarships to conferences, bringing people here is the voice to industry is becoming a very important part of our work and we’re really thrilled that we get lots of people saying, yes can I be in the panel like the one I saw at the Pharma Force, so our mission is to get the voice of the activists out there and convince that you should work with them.

So with that said, I think the stage is well set for them to answer some interesting questions so, knowing we were late in the conference, we said, let’s think of some questions. What might be things that you all be interested in and we have 3 questions that we’re going to attack as a group and then at any point, you know, after each question you might show up a hand and say, hey, I want to follow up on what you all said but each one of the panelists has helpfully thought of these in advance. So–and one thing we thought that you might want to know is where even these most powerful consumers get their trusted information and how could pharma do a better job communicating in general with the online community? So I’m going to pop up a visual cue and each one of the panelist will try to figure out if it’s theirs. I might challenge to like a like a slide, alright? Okay. I think its Catherine.

Catherine Price: That’s not me.

Dr. Jennifer Shine Dyer: That’s me.

Jack Barrette: I’m sorry, it’s you? I will not stop you now.

Dr. Jennifer Shine Dyer: So where do I get my most trusted information, so as a physician I am rigorously trained to look at randomized control trials, evident space, PubMed, of course, but when I want to know what the patient point of view is. I look to Diabetes Mine, I look to control Twitter chat or a–an automated–not an automated but a chat that’s called the Diabetes Social Media Advocacy Group, so DSMA it’s every Wednesday night at 9 o’clock Central or Eastern. And then I also look to Diabetes Hands Foundation which are on community chats that are organized in a way that you can look up the subject. And so as a doctor looking at the patient point of view on these sites makes me a better doctor and it helps me understand what my patients’ challenges are and that’s where I look for information.

Jack Barrette: Great. Like the slide.

Amy Gurowitz: Okay, that’s me. Didn’t want to overwhelm you with too much graphic, you know. Focus here.

Jack Barrette: And I couldn’t get my wireless to work. My bad.

Amy Gurowitz: What’s that?

Jack Barrette: I couldn’t get my wireless work to get that range and so. If you try to give you…

Amy Gurowitz: Technical difficulty. Please stand by. Move Over MS is a dot org that I happen to really appreciate. I think overall the trusted resources that people go to, to learn about things, as the stat say are with peer connection. Much of which in the MS communities on Facebook. It’s huge. In fact, the different medications for MS, there can be very–a great deal of brand loyalty and so there are pages and sites setup by patients that are on a drug like I’m on Tysabri and so there are different sites I can be a member of that are on-going conversations with Tysabri patients and likeness for each other medication for MS, I think that in terms of trusted resources, most people with MS, it’s kind of a love-hate relationship with pharma, you know, you are either loyal to your brand because it’s helping or just cynical and angry that they cost money or you can’t afford to get it or, you know, all the things like it’s a chronic and curable disease and therefore they’re benefiting financially from our disease but there’s also people who are in between along the way and as people switch meds there are different places that they will go to get information specifically about the medication but if they want trusted information and something that state don’t even feel that is biased but just supportive of the community, a site like moveoverms.org is a place, also the National MS Society and other MSAA, Association of America. They often, for instance, in the case of Move Over MS, it is funded by Acordia who does the medication–oh, my gosh, I’m blanking–Empira, I am on it, too. You know, but the way they have it set up that makes it real–you get kind of attached to this and involved and engaged in it. And very small at the bottom, you know. It’s a dot org, so you feel like it’s a trusted space. It says, you know, funded by but not, you know, but in partially, you know, by Acordia and so if you make it all the down the page and you see that, at that point it’s not going to be an initial in your face kind of advertising or it won’t evoke any kind of negative feelings. You’ll get interested in the articles, in the interaction and thinking like, oh, Acordia does this, so I think that’s a really important part of online learning and I don’t know–I think social media, Facebook, you know, as the stat say, it should be left to the patients to engage with each other and maybe to be used as an outside, you know, from pharma and the service agencies, it should be used as a research tool more than something that would be directly involved in. But for the most part I find that the pharmasatfun.orgs, you know, really are most well received.

Jack Barrette: Great. Okay.

Catherine Price: So I’m in a bit of a privilege professional spot in terms of where I personally get my information because as I said I’m a journalist, so if I have a question about diabetes, I pitch it to one of my editors and then I call the person who’s like running the study or speak to the person doing the project, whatever. So that’s very lucky for me but I do try to communicate that to as wide an audience as possible, so I don’t have a slide for it but the main site that I write for is called the asweetlife.org and they do a really great job. It’s not a pharma site. It’s run by 2 people who actually both have diabetes themselves. They both came down with type 1 as adults after getting married, very weird. But it’s a great source that I’d recommend checking out just as very, very well researched and well-written articles. But Sanofi also started–I wanted to give a pharma example–started this site called The DX which is–it’s kind of a really cool site because it draws together articles about a lot of different aspects of diabetes and diabetes, I think, is interesting and that it’s such a lifestyle disease. There are so many different aspects to it. There’s emotional aspects, there is the actual medication aspects which they did not get in to on this site. There is, you know, how do you actually go and get go to travel if you have diabetes. All these different questions about how it interacts with your life, so what they’ve done here is they’ve gotten–they specifically reached out to people who are professional writers and had diabetes which is why I started writing for them to create new content for their site. They also started to aggregate stuff from around the web. So if they knew that like Manny Hernandez Diabetes Hands Foundation was doing something interesting, they’ll pull in references to that. You can’t see it on this page but if you go to this website, you’ll also see at the top that there were bunch of different tabs that link to their various other efforts in the diabetes communities. So it links to their Facebook page, their Twitter page and then other really interesting resources. They have like a program like A1C Champions which is people with diabetes who have done an excellent job of managing their diabetes, who’ve been trained to interact with other people with diabetes to help them learn how they might be able to better manage their own disease.

So they’ve really done a great job, I think, of managing to create this resource that encompasses a lot of different aspects of life with diabetes, that’s useful for people with diabetes without getting into the question about treatments, their own products. In fact, I’m not allowed to even use the word insulin when I write. They feel like go through this whole legal thing to use the word insulin which from a journalistic and diabetic perspective is a little crazy to think of since that’s obviously very important. But anyway, they deliberately keep that off the site and I think it’s amazing how useful it can be even if they’re not trying to talk about treatments and not talking about the cause of diabetes and things like that. So I think they’re doing a really great job, they’re very innovative.

Jack Barrette: Well, I think it’s been mentioned that lots of conversation in the last 2 days has been about value and changing the position of pharmaceutical companies from co-manufacturers who sell a brand to creating value for–in a therapeutic category and something as well received as The DX as the Sanofi overall diabetes perspective is it’s a case study. There is no question that when we ask folks for the Community Choice Awards which is where consumers nominated companies for the best companies in social media, Sanofi came up time and again, because they’ve committed to the lifestyle issues and really doing a good job of knowing what’s going on with people with diabetes and it’s not just a once in a while lifestyle article or renting content for some place or saying what’s really live with this and be there with our patients.

Dr. Jennifer Shine Dyer: And they’re taking advantage of stuff that’s already out there and bringing it together, so that more people get access to which I think is very smart.

Jack Barrette: Right. So you can create value and I think it’s no questions that I think–would you agree, Catherine, that Sanofi has kind of stepped up to a leadership role in a diabetes community that maybe has outsize as compared to what their market share and the thing…

Catherine Price: Yeah. And actually it’s interesting, I just saw my endocrinologist last week. I’m looking enough to have a great endocrinologist and I was asking her about her opinions of pharma and she is very distressful just in general about efforts by pharma but he said, well, with that Sanofi and this DX thing and she goes, oh they’re in the class by themselves and what she really liked about them was that they’re funding–I’m not sure that if he does, Jen may know this, they fund education programs for–I don’t know if it’s for endocrinologist or fellows or…

Dr. Jennifer Shine Dyer: Fellows, yeah.

Catherine Price: For fellows but they’re not pushing their own products. It’s not like a Sanofi driven educational program. They’re just funding these people to go to a pre-existing programs and my endocrinologist love that because it wasn’t trying to sell their own product but it was creating a big difference and meeting a need.

Jack Barrette: Right. Excellent. Thank you. Good. Let’s move on to our next question. Any questions or thoughts about how pharma companies could communicate better trusted information where these guys find information? Yes?

Female Speaker: I kind of have a question for Jen. How–what majority of doctors _______ [00:19:18] on the way with the patient point of view? I know you mentioned that and I can see your action just speak so many things. How many–what majority–do you have your percentage that you got there?

Dr. Jennifer Shine Dyer: So your question is about how many doctors are looking at the patient experience? Well, I’m a pediatric endocrinologist, so I was mentioning that a mom of a child with type 1 diabetes is as scary thing. You got to be on your game. And you got to know the patient experience or they’re not going to come see you because they want the best for their child. So at least in my practice all of us look into the patient experience. We’re involved in the offline environment as well, so locally being part of fundraisers being very involved in the community offline as well as online. I’m one of the only people that I know that’s really as involved in the online community, but I would say a majority of doctors are involved in the offline community. At least–but, yeah, the mentality is changing so at least of my age, doctors it’s pretty normal because a lot of people my age are also parents and they are involved in thinking like a patient.

Amy Gurowitz: I want to add something to that if I could. From the MS perspective, very often and I see this coming up with my MS digital peers that the doctor is not the person in the office thinking about the patient. The doctor treats the disease and the nurse, the clinical nurse is the one who treats the individual, the person. And I, from my own experience, when you have a disease that’s incurable, I mean, you know, as you know it’s a life connection and feeling the confidence of working with someone that obviously really cares about you is generally in our experience found with the nurse.

Jack Barrette: Great. Excellent. Okay. We’re about to try a little bit we thought of things that might touch on different themes that we cope in the conference. The panel would address. So going to continue a little bit on trust but, you know–so who is doing the job? We talked about Sanofi and I think we’ll talk about them again here. So let’s give some examples specifically what, so here’s a different company in the diabetes space.

Catherine Price: Okay. So that’s me again.

Jack Barrette: Yay. Practice live. Go.

Catherine Price: All right. So I recently went to a conference where I heard the woman Amy O’Connor who created this Lilly Pad site speak and basically she’s very innovative forward thinking person, Lilly–not just diabetes obviously. Where she recognized that, as Jack was just saying, a huge percentage of Americans around social media, I think she had it like 60% and she also realized that I believe she said 37% of people claim to be using it for political activism. So she was trying to figure out a way that Lilly could become involved in trying to get the voices of these patient communities involved in the advocacy with the government and so they put together this Lilly Pad site which also has a Twitter feed and this is, you know, all over the internet and it was a way for Lilly to bring messages or issues that might be of interest to patient communities to the patients in terms of advocacy–government advocacy and then get those patient voices to the government as she pointed out the government just like companies, just like everybody else listens a lot more when comments are made publicly and if it’s behind closed doors. And so she found that if she can get patients to tweet to representatives about issues and get these campaigns going that’s much more effective.

Anyway, I just really liked it because I thought this was a very innovative way for this company to engage with patients and also empower them and to help them make a difference and again, she supposedly says not talking about diseases states. So for example in their cancer efforts, they’re not talking about what causes cancer, they’re not talking about what the treatments are for cancer. They’re talking about the issues that anyone with cancer could relate to that become a policy issue and then trying to connect these two sides. So I thought it was pretty impressive and she gave some statistic about how–I forgot exactly what aspect of FDA regulation she was trying to get people involved in but her bosses were like, you know, all right do what you will but you’d be lucky if you get like a thousand people to respond to this total. She got a million people a week to engage in social media. So just gave the sense of like this is a very powerful tool waiting to be developed.

Jack Barrette: Okay. Amy?

Amy Gurowitz: Ah, yes. Education and support. The online social media aspects are, you know, with the MS community, I think when you’re looking to social media like Facebook, you know, as I alluded to before I think that it’s a better resource in terms of research and understanding the patient community as opposed to, you know, sending a strong message. You know, read the medications that your company produces and see what the community is saying as opposed to having a very present, you know, having your pharma name. I think that would really make a big difference because you’d be, you know, and like We Go does–thank you, We Go, they are bringing the patient message out and that really is the most important thing. It’s hard to mark it or even help a community on any level if you don’t really understand them and so a lot of the conversations are happening there. And, you know, as far as there are two I’ve shown right here that are more patient centric with less advertising. Sometimes it’s not even immediately clear who the pharma is and people will become attached to these types of sites and feel connected within and get information that’s reliable for these patient MS lifelines, you know, the connection to each other and reliable information is more likely to come from a site like this. Although, I do have to say, when you’re using people on the site, invariably you’re alienating someone and I heard a lot of them. I’ve heard a lot of conversations about, oh, why is everyone so pretty? Why is everyone so young? Why isn’t there anyone with a limited ability? And it really is a slippery slope because if you’re showing people that are older and you’re showing people that are more severely disabled or challenged, as I like to say, then you are also alienating people with that. You know, you’re making the–a person who is very new to MS scared, so they–I think that moveoverms.org is a great example and that it’s graphics. Like compelling graphics like an apple or just something that is like colorful and engaging without, you know trying to pigeon hole. I think the MS community is so sensitive to–because they’re so different in variable that they’re so easily misunderstood and it puts us on the defense and I think that’s part of what goes into the complicated relationship between pharma and MS. It’s very complex web of issues but I think that, you know, you can represent and pull people in more effectively if they aren’t pretty young people on the site.

Jack Barrette: But if there is introduced to me as pharmaceutical folks to rep, you’d be surrounded on which has Rebif now that quite had been hasn’t come out the market yet. Not the top of the heap in terms of current products but a trusted resource because the way they engage the community. So the value is there despite the fact their brands are still catching up with the orals, other spaces and bear, you know, again dealing with some older products still very valuable for many folks but not, you know, the bleeding edge of new product launch that’s getting that trust but more their representation in their communication with the patient community helping them to retain that value position. So kind of…

Amy Gurowitz: Just wanted to add one more thing. Simplicity. Don’t overwhelm, don’t do outreach to patients with just an enormous amount of information and I think when you have something homepage that sits on this monitor without having to scroll, it’s–and not a hundred different links and I mean, it’s the best just kind of a learning theory approach but it–you don’t want to overwhelm a patient, you know, across the board. So again, these have been–I mean MS Lifeline does had that site for since I’ve been on Rebif. And often you don’t learn about specific connectivity sites until you’re on the medication but people spread the word and, you know, I’ve used this site and yes it’s Rebif but they really have a great patient interaction going on there. Even if you’re not on Rebif. So those are the kind of things that are shared on Facebook and, you know, again, the Bayer site, that’s new-ish. I mean, they used to blend together when you’re older, don’t they? But it is on a newer site and I think that they’ve responded to the whole keeping marketing advertising separate from anything that they’re hoping to connect the audience and potentially educate.

Jack Barrette: Great. I’ll move on to Jen and with the only downside of having a physician on your panel seems they have to run and do patient these things, so Jen’s going to probably close with your comments about the–what’s going right now is the Atlantic Magazine article graphic that…

Dr. Jennifer Shine Dyer: Yeah. So well, this is the data diabetes challenge with Sanofi and I thought as a physician and an entrepreneur, I was really excited about the challenge and that there is a patient point of view that was part of the voting and I just thought it was very well received and an example of doing something that matters to patients and using it as a marketing opportunity and I just only have glowing things to say about that and it’s very well received in the diabetes online community and the Sanofi Twitter feed participates and the diabetes online community and in fact just yesterday, there is an article in the Atlantic about the relationship between the diabetes online community and other providers or pharma and basically the division of people in the diabetes online community are the people with diabetes, healthcare professionals and people that have a general interest and fitness and also the healthcare professionals include pharma and everybody in the industry that “makes money” off of the disease but essentially creates the industry around making things better for diabetes and the relationship with the diabetes online community and all of the providers in pharma is not a negative one at all. It’s a positive relationship that really I think people like to be listened to and that’s as a patient and as a healthcare professional, I want my patients needs to be met and to be heard and that’s what’s happening on the diabetes online community right now.

Jack Barrette: Great.

Catherine Price: Yeah. If I could follow up on this slide. Jen and I were laughing because this came out yesterday. It was such a fortuitous article but it was about the diabetes online community but I thought it had a really useful insights for everybody and it was called Cranky Pancreas Tweets, how the diabetes community uses social media and what this graphic is showing is that these researches from more inside the analytics to the study looking at the subjects that people tweeted about who different stakeholders in the disease so you have friends and family, the healthcare professionals Jen was talking about and people with general idea about–I’m sorry interest in health and fitness and the dots indicate the subject areas they’re talking about. You’ll notice they’re not overlapping. I think that’s a really important message for pharma to pay attention to is that the people with diabetes are talking amongst themselves. The researchers are talking amongst themselves, pharmaceutical companies talk but they’re not actually having conversations together and one of the most salient quotes I found in that article was actually the conclusion the author drew, going to read out loud, which is “that people with diabetes share information in a way that seems relatable, not sterile. If researchers and marketers could figure out how to make their efforts feel more personal, maybe they could reach a broader audience with information about new study as technologies and disease management techniques.” So I think that’s a great visual that kind of shows what the potential is and what’s not happening as well as it should be.

Jack Barrette: Right. I don’t want to make it hard for you–just slide up the side. A round of applause for Jen please. [Applause] Thanks, Jen, for being _______ [00:32:03]. We’ll take up the slide, no worries. That was a very fascinating article. It gives the idea that we’d love to have a conversation, I think I’ve heard that a lot in the pharma space but FDA makes it hard but you’re seeing in Sanofi and you’re seeing in Lilly Pad with the Twitter feed, you’re seeing companies that are now saying, hey guys, they can do this, we can do it too. So as a company that works with sponsors and talks about creating social programs all the time that activate–help activists and educate by patient education is very little you can prove through a series of precedents in the pharma space now. It may not be in your disease state to say, look this is a regulatory hurdle that other people are jumping over. They are already on that side of it. We’re going to get behind and in helping your teams in regulatory to see that. We might want to do a whole regulatory spiel but there is enough good examples of people doing a real conversation now that you have fire power and looked at diabetes, looked at MS that the leading condition is to show what could be done in your condition. Okay. So the last thing I want to ask is okay, mobile. We’ve all got smartphones, we’ve all got–you know, pretty good about–now you’ve seen during these panels, thank you. But, you know, are they really here or communities really adopting these? How do patient communities feel about them? So what Amy and Catherine are going to talk a little bit about apps that are sticking in their communities and why they think they might be sticking? So there’s–that’s probably Jen’s. Amy let you start with….

Amy Gurowitz: That’s me. Yes. There are–it’s very difficult to find an app that really helps a person with MS really take care of there every day. Manage it, be aware of it and it is really helpful to keep track of things, digitally especially, being that you really should do a comprehensive report to your neurologist over time really tracking and understanding. There was a–there isn’t currently an app by pharma that people are embracing. Most–there was a site I went to recently that’s the 14 best apps for people with MS as voted by the MS community and there were all dot orgs. This one in particular got some of the highest ratings and it allows for a certain amount of input that you really need to do. I mean, it’s not a one size fits all with MS. And so what one person wants to document is in no way reflective of the entire community and I think because as I’ve said that the MS community really is defensive, if you will for like a better term, of their own version of the disease. The more effective mobile manager is going to allow for customization and I think My MS Manager is doing a good job.

Jack Barrette: Great. Catherine?

Catherine Price: This is actually Jen’s slide…

Jack Barrette: I’m sorry. I’ll go back to yours. I apologize.

Catherine Price: Although I will say that I think what she’s doing is awesome. Yeah. Do you have the slide that actually shows the data analytics?

Jack Barrette: I don’t have a slide. I’m sorry.

Catherine Price: It is okay.

Jack Barrette: Actually, your slides have not been here. That’s my bad.

Catherine Price: Well, so basically there are ton of diabetes apps on the market. I just looked yesterday in the app store and saw that just searching for diabetes because there are 729 of them but that doesn’t count all the other ones that are more just fitness and nutrition based that also could be used for diabetes. There is a ton. So the short answer to the question of should pharma get involved, I would say yes, you should because people are using it. But I think you need to be smart about it. I personally don’t use any of those apps because I don’t think they’re useful for me, personally. Again, I am a very tech savvy, very educated and very proactive with my own care which is not true for a lot of other people and so different people, different needs, something that we’re seeing with MS, but anyway the reason I wanted to use Medtronic as an example is that they are–they have a software product that they’re working on a mobile app for–called CareLink and basically it downloads the information from your insulin pump and puts it on a chart and then it also, ideally, if you’re using their brand of continuous glucose monitor, will overlay the glucose value so that you can see relationships between insulin doses and blood glucose numbers and share that with your doctor. I don’t even use their product despite the fact I’m a Medtronic pump because I can’t get the stuff to download so there’s always technological hurdles and I think the bottom line I wanted to share is that from a diabetes perspective, one of the biggest problems is that you have all these different silos of information you have. Your blood glucose meter, I have a freestyle–Abbott Free Style Lite blood glucose meter because it’s the only strips that my insurance company covers. I’m on a Medtronic pump, I’m on Dexcom CGM. They don’t talk to each other and there’s no app right now that allows them to talk to each other without me manually entering data.

This thing gives–blood glucose reading every 5 minutes, so–and it doesn’t work on Macs. It only works on PCs if I did actually hook it up. So all that is to say that I think that you need to have a patients’ perspective of what is useful, how they can use the data, diabetes is very much a data management disease. There is so much data but if you’re creating an app that either duplicate something that’s already out there or ads work for the patient, like having to put stuff manually in, we’re not going to use it. So I would recommend looking to this sphere very aggressively but look at what’s working, talk to patients and there are a lot of cases where there are entrepreneurs out there like Jen who were creating these apps themselves, from the bottom up that might be good to support. I don’t think you need to reinvent the wheel and do it totally on your own. I know that there is, you know, the FTA just issued its draft guide or, sorry, it’s a guidance for mobile apps since September 25th and that diabetes in particular is a very gray area in terms of which apps would be regulated as medical devices but I don’t think that should prevent people from trying to really engage in this area.

Jack Barrette: Great. I could spend–it’s a very consistent theme from you all. Thank you very much as well as others and–the value, the total picture of the patient needs to be considered when you undertake virtually any type of social media or technology based or especially app based program. These are–if you’re going to manage my disease, great. If you’re going to do a minibrand.com on a smartphone probably not very useful to make an–I think that’s something–then again, as a–as we head to the end of the conference, the idea of bringing value to the total patient experience and becoming a different kind of company that things about outcomes and a patient’s whole life is a part of what you heard throughout this presentation. We’re officially out of time. Happy to take questions. If you folks want to ask them, I’ll let Richard–shut us down when you’re ready.

Adam: Hi. This is Adam Fudona from Ibsen. Question is now how penetrated are technology and technology platforms into the Medicaid group? Because they–for sudden disease states are pretty significant, 30, 40 and 50% of the patients could come from the Medicaid group and I haven’t seen any numbers that says they also participate actively in electronic communication or iPhone based communications, those kinds of things. Any thoughts on that?

Jack Barrette: It’s a great question where, you know, where obviously we’re in kind of impacts the penetration of smart devices, that sort of thing. I haven’t seen a study. Have you all seen something like that?

Catherine Price: Usually, what percentage of Medicaid pace to people who don’t necessarily have access to the techno–like how many people have access to the technologies? So yeah, I mean, one thought that comes to my mind, I don’t have a direct answer to your question but I think that that prompts another thing I wanted to mention which is I think that there’s a lot of room for a much more out of the box thinking about how you could apply technology and reach patients who might not have access to computers or iPads or iPhones themselves. One company that’s doing that is Safeway. They’re–I recently heard them speak at a conference and I’ve been talking to their head of the pharmacy department and they’re trying to figure out a way to leverage the pharmacies in their stores to provide diabetes educations and one way would be to have an in-store iPad that’s locked down that just has one app that allows people to do little educational modules about diabetes. I’m actually trying to help them develop this and I need to a sponsor so if you know anyone, let me know. But anyway, but that would–that kind of thinking where you are providing people with the technology or maybe they’re in the waiting room of their doctor’s office and instead of like my doctor has this stupid television with morning talk shows on, like why? I don’t want to watch that when I’m not in the doctor’s office. Why not leverage that 5 minutes to provide these mini modules that could then be trans–the information could be transmitted to the doctor so they know what the person’s educational needs is, needs are and they can help to focus the visit. So to answer your question, I think that is an issue, technological access for people, for low income people but there are creative ways we could get around that, we should be working on.

Amy Gurowitz: I second that.

Jack Barrette: Great. Great. My shameless plug. We Go Health Activist Award nominations are open, if you go to wegohealth.com. I hope you’ll nominate our panelists, including Jen I believe for awards. I can’t nominate them because I’m a CEO of We Go Health, so how credible those awards be but I think I would certainly nominate if I could. I hope you will and nominate other health activist that you know and meet and have met during this conference. So thanks all very much.

Catherine Price: Thank you.

Amy Gurowitz: Thank you.

[Applause]