College Diabetes Network (CDN) founder and CEO Christina Roth has diabetes. When she was a college student she found that she didn’t have an adequate support system, so she built one for herself, and created the infrastructure for students on other college campuses to do the same.
Fast forward to the present, and she is at the helm of a growing not-for-profit organization dedicated to providing the tools necessary to empower persons with diabetes who happen to be college students — going through what is often a challenging time for anyone, not just someone living with a chronic condition requiring monitoring and self-care — to share experiences, share tips (medical advice is moderated by medical professionals) and more, using the existing infrastructure of public social media sites, as well as the CDN website and blog. The organization now offers resources for parents of college-age children with diabetes as well.
In building this ecosystem of support, Christina has focused in part on providing curated advice from medical professionals in a manner that can be accessed easily by college students, but the secret sauce is the peer support network that CDN is building out on line and in the real world (chapters established on over thirty campuses across the US and Canada in just four years, starting when Christina was an undergrad).
Have a listen to our conversation, which clocks in at about fifteen minutes. Come hear Christina talk about CDN at Diabetes Innovation 2013.
Read the transcript after the jump.
Here is the full transcript of our conversation:
Diabetes Innovation Interview with Christina Roth, CEO, College Diabetes Network
David Harlow: This is David Harlow for Diabetes Innovation and I am speaking today with Christina Roth, founder of the College Diabetes Network. Hello, Christina and thank you for joining us.
Christina Roth: Hi, thank you so much for having me.
David Harlow: So for starters, could you please give us a thumbnail introduction to the College Diabetes Network? What is it?
Christina Roth: Sure, so the College Diabetes Network or CDN is a national nonprofit organization and we work with students across the country to create support networks on campus and to provide all the information or resources to make their transition into college and their experience there as successful as possible.
David Harlow: That’s great. I know from personal and family experience that the transition from high school to college can be difficult particularly for someone dealing with a chronic medical condition. And I imagine that you have had some significant uptake in campuses across the country; could you give us a sense of the reach of the network?
Christina Roth: Sure, absolutely, so we are still actually a pretty young organization and we had just started back in 2009, when I was actually a student and reached out on my campus. So at this point, we have about 36 chapters throughout the country and in Canada. And we have contacts to over 100 campuses, so it’s been really exciting to see the really quick uptake of all of it. Before we were here, there was no organization to connect these individuals or provide resources just for them. So we came into this space and are just trying to fill the need there.
David Harlow: And so how do you find yourself reaching out to new campuses? Do people find you online? Do you find other organizations online and link up with them? How does that work?
Christina Roth: So we actually, we attribute our success really to the fact that there is social media and that there is the internet that everybody is using them. And through that, people have contacted us and from the parents and the student leaders, and even the campuses that reach out to us, we then work with them to create groups locally. But because we are just starting to become an organization with some sort of budget, we will actually be starting to reach actively to campuses to try to create groups, where there really might be a huge need. But what we do is we work directly with the student leader to start the group, so that there is always that cornerstone of that peer support that we started from.
David Harlow: You mentioned parent groups as well or parent contact as well, so are there parallel groups for parents of college students with diabetes?
Christina Roth: So right now, what we do is we directly with just students to create campus-based groups. But as we have really become this hub for young adults, it’s become apparent that parents really need the support as well. So we have a parent advisory committee, who is helping us to figure out what resources parents need and what they want. But what we offer currently right now is information and resources through our website and then we are always getting emails and phone calls from parents about questions that they have or some way that they want to be put in touch with another parent or even a student to baby-sit kids. So right now, we are just trying to figure out what parents want and need and find ways to access that as well.
David Harlow: Okay, and what is the source or what are the sources of the information that you are sharing, if it’s care management or diet and other bits of advice, where are you sourcing that information from?
Christina Roth: That’s a huge question. So right now, we are working with partners throughout the diabetes industry, so either nutritionists, exercise physiologists, experts, medical professionals, we work with them to make sure that we are providing the right information to our students. But with that being said, we are also getting tips from the students themselves, or getting the information from students and then having a medical professional to review it. We always want to make sure that it’s central to the needs of these young adults, but that it’s the right information from a medical professional’s view.
David Harlow: Okay, great, so any particular suggestion or idea from a college age student would be vetted by medical professionals before it’s posted?
Christina Roth: The only place where that’s not the case is in our blog. We do have student bloggers and they post information, but it is posted that it’s their viewpoint, so not that of a medical professional.
David Harlow: Can you give me a sense of how many contributors you have, whether it’s student bloggers, medical professionals, writing or being involved in some way, how many folks are involved in putting this information out?
Christina Roth: We actually don’t really have a number. We put calls out to our student leaders kind of regularly and post what they give us. We have one student blogger that posts every week, once or twice a week. And then we always — we have our staff put up posts and then we do guest posts pretty regularly. But, so I don’t really have a number, but we are always open to guest postings.
David Harlow: Great, so there is blogging and there is new information being put up on the website as well, I imagine. And are there other active social media communities that have grown up around CDN?
Christina Roth: So one of our mantras is that there is no reason to recreate the wheel. So we do a lot through Facebook and Twitter and the communities that live there. We have partnered with Tu Diabetes and Diabetes Hands Foundation and have communities there. And then really just anywhere that a young adult community pops up through existing social media, we are there to give support. That being said, we do have our student leaders, so we have created listservs within our organization for those individuals to stay in touch and to communicate with one another.
David Harlow: I think that’s a great point, so there are so many groups, sites, resources online already and there is sometimes the problem of folks that are recreating the wheel as you say in order to try that, to brand an outpost or something. But if you can get the information out through an existing community, that’s certainly at least as valuable and certainly easier for people to access, if it’s a community they are already involved with. Do you have a sense of how many folks are using the resources that you are creating, whether via online or on a local basis, on a weekly or monthly basis or is that sort of the wrong metric?
Christina Roth: I would say that we tend to use different metrics, but we are in the process — because that’s always an essential metric that people look to — so we are in the process of putting together our database now, which will give those metrics that we can use. The ones that we tend to use are actual student leaders that we are always in touch with, our reach on the actual campuses. And we are in the process of finding out how, from those student leaders that we are in touch with, how many people that they have been in touch with and that are being affected by CDN. So we are in the process of collecting that and we will have that soon. The other ways that we get in touch with people are one, just through our social media through Google Analytics, who is looking at our resources. And then we also have other, just communications through our newsletter and our iPhone application actually as well, so the amount of downloads and interactive use with that.
David Harlow: So what do you see as the value, or what feedback do you get from users and visitors about the value that’s offered by the CDN resources?
Christina Roth: So CDN, I would say that there’s a few different answers to that. So one, the cornerstone of what we do is peer support. The fact that it’s peer based is just where the value comes from in general. The second value I would say is the fact that the organization is creating a hub for these young adults, of resources, interactions and information, that didn’t exist before. So one is just the fact that we exist and we are giving rise to the voice of young adults with diabetes. And the second is that, it’s that peer interaction, because that tends to be, especially for this population, what’s most effective in creating motivation and just providing just some sort of value to individuals.
David Harlow: Do you have any plans to review this in sort of a rigorous way to see is this working, are you are making a difference, can you measure that against groups who are not involved with CDN and other college campuses?
Christina Roth: Absolutely, my background is actually in psychology and research. And my original plan was to become a clinical psychologist before CDN sort of blew up. So always, as I have been creating this network in this community, has been in the back of my mind, how can we use this to leverage and really help to better inform the needs of young adults and then how to better help them. So part of that is finding out our outcomes and the effect that we have, so part of what we see this database that we are building doing, is helping us to collect that information, so we can be much more rigorous about it.
David Harlow: Great. Are you able to share with us information about who some of your largest supporters are, are you supported by folks providing care and services in the diabetes space or other sorts of supporters?
Christina Roth: Sure, so right now, we are actually still a very small nonprofit and we really just got our break at the end of last year. Up until then, we were completely grassroots and volunteer run. At the end of last year, we were very lucky to get a grant from Novo Nordisk and since have set up a corporate membership that we are just starting to roll out. So we are talking with a few companies now, that actively our only company supporters are Novo Nordisk and actually a small one from Edgepark as well. But in addition to our corporate side, we are trying to get them involved with this community. We also are in touch with the Helmsley Charitable Trust and some other foundations to try to get some foundation funding.
And then in addition, one of our big aims is the sustainability of this organization. So running it, so that we have other sustainable revenue sources to bring in and keep us going even if we didn’t get a grant one year or we don’t get a company supporter, so we are very independent and not relying on one central source of an income. So we are looking at those other business opportunities now.
David Harlow: Do you see other organizations in the same or in complementary spaces that you are working with or would like to work with?
Christina Roth: Absolutely, so like I said, one of our mantras is not recreating a wheel and part of that is being able to collaborate with other organizations, that might not be right directly in our demographic, but with complementary programming. So we do collaborate with many organizations throughout the diabetes community and are branching out even into the college health community in colleges as well.
So for instance, I am trying to think, let’s see, off the top of my head. The T1D Exchange has been an amazing partner to us so far and their Glu community, Diabetes Hands Foundation, Diabetes Scholars Foundation, we are currently talking with, just really all throughout the diabetes community. There is whole list and on our website, we have an amazing page of all our partners, they are all listed there.
David Harlow: Okay, so what do you hope to learn at the Diabetes Innovation Conference this fall?
Christina Roth: I am really excited about one, just say networking to connect with other passionate individuals that want to create change in the diabetes community, whether it be from the industry perspective, from the policy perspective, from the community perspective. And just try to figure out ways that we can be innovative about creating change. And then also I am excited to be on the peer support panel to just really figure out ways that peer support can be more recognized within the diabetes community and become more of a central resource for diabetes management.
David Harlow: That’s great, well, I look forward to seeing you at the conference and wish you the best of luck in your continued efforts. Thank you very much for taking the time.
Christina Roth: Thank you, it’s been a pleasure.
David Harlow: This is David Harlow for Diabetes Innovation I have been speaking with Christina Roth, founder of CDN, the College Diabetes Network.