Inspiration Exchange Diabetes Moments Episode 4: Diabetes News, Innovation and Straight Talk with Amy Tenderich, DiabetesMine
Cherise is joined by Amy Tenderich from DiabetesMine to share how she uses her journalism background to create a goldmine of diabetes news. Amy said it best, patients need to be involved in the process of coming up with ideas and innovating them. We know best what we need.
- Amy's diagnosis story
- Creation of DiabetesMine
- Diabetes conferences before/after diabetes bloggers
- DiabetesMine Innovation Summit and D-Data Exchange
Intro: Hello and welcome to Inspiration Exchange: Diabetes Moments podcast, a collection of inspirational stories brought to you by Roche Diabetes Care. I am your host, Cherise Shockley. And during this podcast we will focus on stories of inspiration and peer support while on the go. So grab a cup of coffee and enjoy the show.
Cherise: Hi everyone. Thank you so much for listening. I'm your host, Cherise Shockley and today I am joined with my very special guest, Amy Tenderich. How are you doing?
Amy: Well, thank you. Thank you for having me.
Amy’s Diagnosis Story
Cherise: You're very welcome. So there's a lot behind, not even just Amy, but this amazing, I want to call it an empire because it's kind of like empire. I'm not going to tell too much I want to get into your story, but before we get started, can you tell me what your connection is to diabetes ?
Amy: Of course! So I was diagnosed as an adult with type 1, this sort of, they call LADA (Latent Autoimmune Diabetes in Adults) in my thirties, right after my third child was born. I have this whole like life and career and suddenly I've got this crazy disease. And I was not given very good advice in the beginning. So my life was kind of turned upside down and I just decided that I needed to get proactive and try to find resources and find other people and just learn as much as I could about this disease. So that's what got me going.
Cherise: So no gestational, no family history, just boom.
Amy: Well, okay. So interestingly enough in my third pregnancy they told me they had just lowered the threshold, what they consider to be gestational diabetes. So my fasting glucose was just like a little bit above that, so say said, Oh yeah, you have gestational, but I don't know, they didn't seem to take it very seriously and I didn't either. And, then, you know, I had a c section, so I was really kind of racked. I had this five-year-old and a three-year-old and then this little baby and it was just, I was all exhausted and I started losing weight and you know, I had all the classic symptoms but the OBGYN didn't pick up on it. So I ended up landing in the hospital. I probably would have gone into a coma within another night or so I hadn't of done that. So and then, you know, I asked around and it turned out there were some distant relative who had type 1 and, and a few people in type 2 but not any real known history. So yeah, it was quite a surprise.
Cherise: You hear about people after pregnancy developing type 2, but you, after your pregnancy that say that it's anything that one has to do with the other, but you have LADA.
Amy: Yeah, they say this could be one of the sort of, um, you know, factors contributing, although they don't really know, you know, there's a lot of women, you're right, who have had type 2 after gestational it seems more common. I don't know. But in any case, I was, as I said, they kind of rubber stamped me as a type 2 in the beginning, just because of my age. But that was kind of ridiculous because I like wait, I lost so much wait, I looked really skeletal and obviously it was not, you know, was in danger. They also gave me recommendations to take far too much insulin. So I was having, you know, three times a day, severe lows and I didn't know anything. I wasn't, I wasn't given good information about the dangers. So it was a pretty traumatic, as I said, by the time I landed in the hospital. My older ones were five and three, and then the baby was just five months.
So I had stopped breastfeeding only a couple of weeks before because I was so exhausted, I could barely stand up straight. And I thought that it was because of the breastfeeding. So I mean, the fact that I landed in the hospital, it was like super difficult to just be a way, as you might imagine from a five month old baby. Um, and yeah, so it was a really hectic time. And in fact, I was in the hospital for a week. I was just, you know, just raring to get out of there. But the minute I got home, I remember the front door opening and the kids jumped on me and they were all screaming for this, that, and the other. And I just felt like I could collapse right there. And I thought, oh my God, it was so much more peaceful in the hospital.
Creation of DiabetesMine
Cherise: How did you, and what made you start DiabetesMine?
Amy: Well, okay. So again, I was having these crazy lows to the point where I was afraid to like get in the car behind the wheel with my kids, you know, because I would end up shaking and, you know, and I just, I was really like, I can't live like this. Something is not right. And so I started to research and you know, like many of the early people who went online, I searched up and I couldn't find anything that was about real life with diabetes. I found millions of hits about all kinds of, you know, medical, frightening articles, but nothing that really answered my real life questions or help me connect with anyone. So I was trying to do that. I was looking for online forums and whatnot. And then about a year and a half into it, um, it's kind of funny, my husband, who's also kind of in communications and marketing, I have a background in journalism and he had gone to this new media conference and he came home and said, you're going to be a blogger.
It's your calling. And I said, I'm going to do what social media didn't really exist. Right. But it started to blossom and I was one of the first people who then decided to set up this blog thing and write about my life with diabetes. And since I am a journalist, I kind of put on my hat as a journalist and started kind of covering things like the way I would is it is if it were a story assignment. So it was kind of a combination of me just writing my personal experiences and then researching different topics. And right away. I mean it was amazing that immediately people started coming forward and I started getting a lot of comments and you know, obviously it was striking a chord and, and, and then not long into it after I started the blog, a woman at the Wall Street Journal who did a story about a patient blogging and she featured me and DiabetesMine. And that was, as you might imagine, like a big leap and visibility and a lot of people started to reach out and say, oh, this is so right what you're doing. And so that, it just sort of grew from there.
Cherise: I found TuDiabetes, Kerri, Scott, and then of course DiabetesMine around that whole same time. During that time period back in 2008 when I started looking for the community, well not looking for a community, I was actually doing research about an insulin pump. And then that's when I ran across TuDiabetes. And then that's when the whole world of the diabetes online community opened up to me. And that's when, like I said, DiabetesMine. I mean, if I want to know what's happening in industry, you're one of the places that I go to your website because it helps a lot. It gives me information in ways that sometimes it's kind of hard to understand from, you know, medical websites or even sometimes press releases. So I appreciate that.
Healthcare Professionals learning about the Diabetes Online Community
Amy: Thank you. That's really great to hear. That's exactly been our charter all, you know, mine and now that I have a team, it's like trying to translate that stuff into like, what does this mean for real people? So my thought was always like if I were sitting down to coffee with a friend who just got diagnosed or who has diabetes and just kind of wants to know what's going on and say, Hey, I heard about this, you know, this headline that my aunt rose sent me or buzz right now about this topic. You know, what does this actually mean? And so we always try to kind of like break it down for people. Um, what does this mean, your real life and how does it relate to them? Because a lot of these media stories don't go, they don't have the perspective of what's happened in the past.
So we say, oh, it's, you know, we can say, hey, we've already heard about a monitor that's trying to do, you know, noninvasive, for example, noninvasive glucose testing. So let's compare it to what's already out there and just give people a perspective. And I think one of the, one of the cool things about early on for us was I was fortunate that I had press credentials, so I was able to go to these industry events as a member of the press. And I believe I was the first kind of patient blogger to sort of infiltrate like the ADA conference and actually go there and be there as a patient representative and look around and say, oh my goodness, this is what's going on. Like for us kind of behind the scenes. And it was very informative at this time. It was also a little shocking how much money was going into these fancy displays. And you know, all of this fanfare around this disease that for you and me is just, it's just something we suffer from. So, um, there was definitely a lot to kind of uncover there. And you know, I also made it my mission to, at the same time I'm doing this kind of citizen journalism to also try to break down those barriers and like help get these authorities closer to the patient community. And there's just been so much progress on that front in the last years. It's really great to see.
Cherise: So I want to back up just a little bit because you touched on something that I actually wanted to ask you about when you were being that kind of like the citizen journalists and you're sharing now, and this is even before Twitter became what it is. What was your take on the crowd? I know that, you know, there has been a lot, probably around 2010, 2011 a lot of people with diabetes wanted to participate in these conferences. So even before we got to 2010, 2011, what was your take sitting in the room? What all of these health care professionals, uh, who manage diabetes but there was no patient voice?
Amy: Well, yeah, I said thankfully again, a lot of progress has been made. When I first went, I mean people looked at me like I had three eyes when I came in and said, you know, I'm a patient, I'm a blogger, I'm going to report on this. It's like, what are you doing here? You know, what, they just didn't know what to do with me in the first place or with anyone who was a blogger. But that thankfully started to change fairly quickly and actually a couple of years into it, the ADA have to give them credit, realized that like they might need to allow access to some of the bloggers and you know, the advocates who have a bigger following. So they asked me to help them at the time I had helped them come up with some guidelines around, you know, how could, how can they determine which people to give passes to?
Cause they obviously aren't going to give free passes to everyone. You know, they still have to be a little discerning. I don't remember exactly honestly what the we were, we looked at it and said, have you had a certain number of followers or ranking or you know, we came up with different parameters so that they could start to allow not only mainstream media but also, you know, the blogging community and the people who run these big online networks to be allowed in as well. And it's been definitely an evolution. I mean it went from me sitting in the room just shaking my head thinking my God, they have no idea what this is likes and look like the real life. And they never had a person with actually living with disease. Talk about it to the point where it, you know, slowly more and more they were getting more perspectives.
They started bringing in like testimonials from people from patients. And in the last years, we've actually gotten to the point where there are a lot of tracks now at these big professional conferences that actually involve not only patient advocates but people from the DIY community. (do it yourself community) who are talking and actually presenting to professionals about how they are doing kind of off label, basically hacking of devices. But this is what's happening out there and they need to know. So I was really privileged myself to the last couple of years to be able to speak at the AADE annual conference so that diabetes educators one and also ADA and be part of these, you know, panels and whatnot. So again, we've come from like being completely not even recognize to being recognized, to being present to actually being part of the program, which is wonderful.
Cherise: Yeah, I remember seeing the tweet actually vividly seeing the tweet from you, Manny, uh, and David and Hope saying that you, are you all, we're going to teach diabetes educators about the diabetes online community. I remember that. And I was like, yes, finally. You know, we did it.
Amy: Yeah, it was like this interactive workshop and they call it something like step up to the Genius Bar or something fun like that. But it was really cool that we got to not only talk to them about why we get something out of it as patients, but actually like give them tips about how to engage. I think there was a lot of confusion and also I have to say trepidation as a professional. Like are you allowed to comment? Can you, can you be part of the conversation? Is it going to be taken wrong? You know, and there was a lot of, there's always a lot of fear that there'll be misinformation or that, you know, people may get attacked online and so we had to kind of calm, you know, talk them off the ledge on that stuff. Then also just explaining how to get started.
If you've never done it before, like, you know, you look at Twitter or, or what are these platforms? If you're completely never been on social media, it can be a little overwhelming. So I was really happy that we got to do that. And you know, that has evolved and definitely Hope Warshaw and Deb Greenwood of AADE get a ton of credit for not only recognizing how important this is, but you know, putting together these programs where they do as you know now the tweet ups at their meetings and at their events and everything they've really embraced, I'm kind of the online world and peer support in general.
Cherise: They totally took the charge on it. And now, you know, looking back from where you know, you, David and Manny started to present time. I mean there's been more and more of us integrated into panel discussions with diabetes educator. Thank you so much Amy, Manny and David for and Hope for making that happen. So we're going to go ahead and segue into, you know, something I want other people to know about, which is pretty cool, is the DiabetesMine Innovation Summit. And then we're going to also talk about the diabetes, the data exchange, like as mentioned earlier, and you have so many things going on. I don't even, I don't even know if you sleep. If you could tell us a little bit about the DiabetesMine Innovation Summit and also kind of go through that process and explain about the scholarships, because I think sometimes people with diabetes, they don't know that, you know, DiabetesMine has scholarship options that you can actually apply for to participate as a patient and to bring their voice to the summit as well.
DiabetesMine Innovation Summit and D-Data Challenge
Amy: Oh, thank you. Yes. I'm so this is major personal passionate in mine that started actually back in, well it initiated in 2007 when I wrote this post. It was like this tongue in cheek open letter to Steve Jobs. And the idea was, you know, hey, medical technology is so far behind, you know, consumer technology at the time, these devices that we have, we're still very clunky and clinical and you know, larger than they needed to be and just not interoperable and not personalize just, just everything that the Apple products are, they were not too. So that was the kind of call to action was like, Hey, these consumer, you know, Tech Guru should get together with the medical people just hate these things better, you know. So, that posts kind of went viral and got picked up all over and eventually led to coverage in mainstream media, like Business Week, Ink magazine and seeing an ad and even in the Financial Times, all these stories about it, you know, how important it is to design better medical devices and most importantly to have patients more integrally involved in the process of, you know, coming up with the ideas for these devices and, and innovating on them and not just like create something and then have a focus group and sit people down and see what buttons they push.
But actually like doing more like experienced design wearing, figure out what patients really need and what they do in the real world, you know, we know best what we need. So we that what's so big that we ended up realizing that we were onto something and decided to launch this thing called the DiabetesMine Design Challenge, which was as far as I know, the first ever, I'm kind of crowd sourced open innovation competition that was like patient led. I got a grant from the California Healthcare Foundation and like off the folks from IDEO, this famous design firm here in Palo Alto. I got them involved and I managed to get JDRF sort of support us and like issue a statement. So it was like this called action anyone out there who has a great idea for a design for some device or app or platform or whatever it is, some tool to help people live better with diabetes. We want to hear from you.
So we ran that contest for four years actually. We got hundreds of submissions every year from all over the country and even all over the world, which is really, really cool thing to do. And we got, you know, amazing results where some of the people who won actually ended up getting jobs in mainstream diabetes industry, which is wonderful because we wanted to have those new thinkers kind of placed in, you know, where they could make a difference. But after four years, you know, that these innovation competitions started getting more popular and we just thought, what else can we do to kind of push the envelope here? And, and like really, you know, be a catalyst for change basically. So we had the idea to morph it into this conference series. So the first DiabetesMine Innovation Summit is that Stanford Medical School in fall of 2011 and yeah, the idea of these events was really to have this forum where we would bring together all of the kind of stakeholder groups.
I mean, I know that's like a buzz word, but basically like, let's get like really engaged patients and you know, patient activists together with the leaders from the Pharma and the medical device industry and together with the regulatory people and together with like leading clinicians and also like designers and you know, all people who are involved in kind of innovating for better tools and better care for diabetes from becoming at it from all the different angles. And let's have like a real discussion about what the real issues are and try to, you know, learn and collaborate and, you know, just kind of break down those barriers. And honestly, in the beginning people said, oh, you'll never get FDA to come to something like this cause you know, they're going to be listening to people talking about off label use and all this. But we did get them involved and they've been really supportive and, we've gotten the whole array, I would say, of all the major Pharma companies and, platform, you know, device companies.
So two years into it, we decided that we should really try to help get together all of these people out there who were doing stuff with the technology. So we realized that there was like this do it yourself kind of uprising. It started with these d (diabetes) dads in different parts of the country who were kind of hacking into the CGMS to create, you know, better ways to get their data, to keep their children safe. But they were also realizing that like, the technology can do all these things. And so we have this first gathering. It was also at Stanford in 2013 and immediately, like there was a spark of, you know, we're just doing this the whole, we're not waiting mantra came out of that first meeting of we're not waiting for FDA, we're not waiting for industry. We're not waiting for anyone to tell us it's okay.
We can and we will. And we are, you know, building these systems to help us live better with diabetes. So there was all this excitement and you know, again, so much change on the technology front that we decided, wow, we should have this DData Exchange event twice a year. So we can bring these group of people together who are creating apps, who are creating, like I said, these DIY systems that have lots to do with sensors and you know, open data platforms and obviously people working on closed loop with all the algorithms and there's just so much going on the also some health data side above and beyond diabetes in terms of data sharing and the idea that patients should own their data. So that event has become at least as popular as the original summit. So now we do this D-Data event twice a year.
We do it in June, I'm usually on the Friday right before the big ADA conference, wherever that is. And then we do in the fall we have this two day thing now, which is the D-Data Exchange and then the Innovation Summit kind of turned it into innovation days. But the D-Data day is definitely more like deep tech folks focused. Kind of now we're talking about things like AI, artificial intelligence, machine learning, blockchain technology, all of that stuff. And then the Innovation Summit is some technology, but it's also kind of a broader look at like innovating and diabetes tools and care. So we have themes they're like, we've done things like mental health, you know, how to coping tools. Um, things about like navigating the reimbursement system and payers access issues. We've done some things that focus even on like community programs that were not necessarily super high tech.
It's just a really broad look at innovation. And for that event, well, for the fall innovation days, we now have been doing this scholarship contest, since we began. Each year in the spring we put out a call and we're looking for like 10 people, roughly 10 people, uh, who are kind of can convince us that they are really passionate about being part of this event and kind of representing the patient community and have some kind of an advocacy agenda or some passion about this and feel that they can contribute something. And it's been super amazing to bring in this group of 10 people because it brings in, you know, obviously people with diabetes are from all different walks of life, different age groups, different needs. And you know, a lot of these people who applied were doing some kind of local advocacy thing, whether it was a support group or some of them were doing things in exercise that we're doing and helping support other people put together their homemade artificial pancreas.
There are all sorts of things, but you don't necessarily have to be a well-known, you know, famous advocate to apply either. We're just looking for people who can kind of, we ask for them to basically write a short essay explaining why they want to be part of this and what they would bring to the table and all. Um, and it's been really fun and rewarding. So I would definitely encourage anyone interested to apply. And what you get is sort of like an all-expenses paid trip coming out to Northern California and, and be with us for this event
Cherise: You recognize a need and now you're giving back in ways that it actually deals with the advancement of diabetes care for people with diabetes and you and your brand 10 people along, the journey who probably wouldn't necessarily have access to be in the room with half the people that are in the room. What are patient advocates are the scholarship winners, what are their reactions when they're in this space? Because I remember, you know, sitting in spaces and be like, wow, I'm here. Like what did I do to be here? So can you provide any feedback from them?
Amy: Yeah, sure. I mean it's been, that's been one of the most rewarding things people get. Super. I, you know, what we want out of this being an innovation conference is for people to come away, like motivated and inspired. We can see that, that the patients feel that way, but also all the other attendees, which is super exciting. So, you know, people have said, I mean, not to toot my horn, but people said it was like the experience of the lifetime and it got them totally energized to go back to their, you know, home or region and do more and dig in and you know, be bold, not be afraid to, you know, try to take whatever talents and connections and passions they have and turn them into something, you know, to do good for the community. So yeah, we've, people have been super excited. We, we had a repeat applications that people wanting to come again.
But you know, we had in their last year as a, you know, so many applications that we want to obviously try to give new people a chance to be a part of it. But what's been especially cool and in terms of the advancement as you said, I mean it was never just my idea to just sort of have a conference, you know, to hear talks and stuff, but really to try to be like a catalyst for change. And so especially in the D-Data event, it's been so exciting to see that through the connections people make at these events. People getting hired by industry and there's been like advisory boards put together, there've been pilot studies that got launched, like collaboration's, you know, all of these like kind of tangible things that came out of it. Um, which has been really, really rewarding cause that's where I feel like where, you know, it's one thing to put on event an event, which is really great, but like we want that event to sort of make an impact if it can.
Cherise: I remember sitting through several summits and we've been in the same room plenty of times and at the end of it it's like, okay, we go home and then nothing happens. So, to see that, you know, people are getting hired or you know, there's more conversations happening on certain topics. I think it speaks volumes to what you set out to do and it's action, right? You're making it happen and you're helping other people make it happen. Who wouldn't necessarily have the platform to make it happen? So that Amy, I think you're amazing. Your team is amazing. And one day I'm going to make it to the innovation summit one day because I have to see it.
Amy: You're welcome anytime. By the way I think you are awesome too.
Cherise: Thank you so much.
Amy: And thank you for doing this series. Give us a chance to talk to all the folks who are, you know, who are in our group here who are working, working for the cause, right.
Cherise: Oh, not a problem. So, you know, I'm, curious if you could name one thing that you're most excited about in the future of diabetes technology, that one thing, what would it be?
Amy: I guess, I mean it's that automation dream, like I think we're getting so close to these connected systems, um, the first generations probably still going to be kind of clunky and still require a lot of effort on the part of the user. But the idea that, you know, with the, with the do it yourself systems, the looping systems, people are getting amazing results and just the idea that it reduces the burden that you know, you, that you would somehow have this connected system. You're a sensor and some kind of device that gives you insulin where you, it just less guesswork and less, you know, um, effort on our part and all of the math and trying to learn from, you know, what did I do last time and is this going to work for me this time? If I think we're getting really close to systems that will have some kind of automation that we're really ease our burden. And that is what I'm most excited about at the moment.
Cherise: And the magic question, I'd like to ask all of our guests. What inspires you?
Amy: Wow. Well, I would say the people I haven't had met the most amazing community of people, um, since getting this disease. And I know it's always weird to say like, oh, diabetes gave me gifts, but, um, every time I go to any events and connect with people, just, you know, it's not like any job you ever had before because this is people's lives we're talking about and you know, parents who are so passionate about taking care of their kids and you know, people who just really want to improve life for those of us who have kind of compromised health. So I would just say, I feel like it's been a gift to be able to be part of this community and to meet all of these amazing people and become friends with many of them.
Cherise: On that note, Amy, thank you so much for coming on the show. I will make sure that I linked to the DiabetesMine Innovation Summit and also to DiabetesMine website. So you'll get a hundred more people signing up for it because like I said, I think everyone should at least try to attend one of your events because they're fabulous and thank you so much for everything that you do for people with diabetes, and thank you for coming on the show.
Amy: Thank you. I appreciate it so much.
Cherise: You're welcome. Thank you so much everyone for tuning into the Inspiration Exchange: Diabetes Moments podcast.
Outro: Thank you for listening to the Inspiration Exchange: Diabetes Moments podcast. If you have questions or comments, feel free to send me an email or a tweet using hashtag #diabetesmoments.