The Compassionate and Empowering Diabetes Online CommunityFriday, October 21, 2011
David and Elizabeth Edelman`s Diabetes Daily is part of the online community that not only provides informational resources and tools, it facilitates online support through its forums and blogs and allows people with diabetes to connect with one another to get the emotional help they need to manage their conditions.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
Diabetes knows no holidays, takes no breaks, and offers no reprieve from self-management. And anyone with diabetes can attest that it can be a difficult, long stretch of time in-between doctors’ visits, especially when questions and concerns can arise. Sometimes, a PWD may be having a difficult day or going through a bout of depression and they need an ear to bend or a voice of reason to sooth them.
And prior to the mid-2000s, many people with diabetes struggled with trying to find support to deal with the emotional component of this chronic disease.
Certainly, this was the case for Elizabeth Edelman when she was diagnosed with type one diabetes in 2005. As most people newly diagnosed, she sought the Internet trying to find out more, and was surprised by the limitations and lack thereof, of anything diabetes-related online. Shortly after her diagnosis, Elizabeth met her future husband, David, and together, they created the website, Diabetes Daily.
Since its launch almost six years ago, Diabetes Daily has emerged as one of the most important voices in the diabetes online community (DOC). Diabetes Daily has helped fill a pressing need for people with diabetes to be able to obtain sought-out information, give community members emotional support, and provide resources the medical community has not been able to offer. The website was also ranked as one of the 10 best health blogs of 2010 according to Fox News.
The Edelmans (pictured, above left) complement each others’ assets. David is the technical whiz, handling the IT responsibilities as well as much of the day-to-day operations. Along with lending her own first-person voice relating to various diabetes-related issues, Elizabeth provides her culinary expertise writing cooking features and creating sophisticated yet relatively simple-to-make recipes, which of course are diabetes-friendly. As the daughter of two chefs, Elizabeth had the benefit of fine-dining cuisine growing up.
Along with giving people with diabetes a voice through their site, the Edelmans and Diabetes Daily have been involved in one of the DOC’s more exciting and empowering initiatives: political advocacy. For example, earlier this year, the DOC called upon both President Obama and the United Nations (U.N.) to place a greater emphasis and investment on diabetes—when the U.N. was convening in September to discuss non-communicable diseases. This call to action included a letter to President Obama which was drafted by the Edelmans along with many other leaders of the DOC, who attached their names to it.
Whereas just a few years ago, this type of mobilization may have been much more difficult to pull off, these types of actions show the true spirit of the DOC and its aims to address diabetes more succinctly and calls to eradicate it permanently.
DiabetesCare.net sat down with David to discuss Diabetes Daily’s unique place in the DOC, discuss their latest initiative, and the overall role the DOC plays in peoples’ everyday lives.
DiabetesCare.net: How did you first come to decide to create Diabetes Daily?
Edelman: My wife was diagnosed with type one diabetes about six years ago. Together, we went on this journey to find out about diabetes. I didn’t know this at the time, but she really felt isolated and alone.
We started reaching out online to find people to understand what she was going through. We found a community of bloggers who were sharing their experiences, and for the first time, she felt connected. That discovery led us to create our online community where people could bring their experiences and have their own conversations, peer-to-peer. We differ from traditional blogs where the person who writes them provides really only their own voice and controls the content on the site.
DiabetesCare.net: You have obviously been “touched” by diabetes. Did you also see the initial development of Diabetes Daily as a way to empower you both as well as others?
Edelman: Absolutely. Dealing with a chronic illness really requires you to stay focused and motivated on a day-to-day basis. The problem with our medical system is that you often see the doctor for 15 minutes and you leave. It is then three months until your next visit, so what do you do to bridge that next visit? How do you stay motivated? This is where a peer support group can be a big difference from success and failure for many people.
DiabetesCare.net: How would you define what Diabetes Daily does for people with the condition?
Edelman: Diabetes Daily increasingly has two components that are tightly interlinked. The first is this idea of providing diabetes support for people to check in with their peers, stay motivated, and get rid of that sense of isolation. The second component, which includes Diabetes Daily University, is providing a way for providers and educators to bring their practice online. So it is this idea of peer support and professional education. When you start taking care of yourself, you start understanding your diabetes, and how to make it work for you. This idea of support and education work really well together and reinforce one another.
DiabetesCare.net: Would you say that the diabetes online community and its means of communication (forums, blogs) is also a reflection of how we primarily talk to one another today?
Edelman: A lot of people in the medical industry have concerns with people going on websites for information because they feel people can say anything. And it’s true, because this is just an extension of your neighborhood community. When you go to a local coffee shop or you are sitting in your doctor’s waiting room, you might strike up a conversation with someone and start talking about diabetes. You have honest conversations, but you have to consider your source of information too.
The difference now is we are able to connect these people who share a common bond. We are just allowing dialog that happens in all different facets and environments of peoples’ lives.
The real issue, before these online communities were developed, was that people didn’t talk about diabetes. Even though you might know someone else who did have it, you really didn’t discuss it.
DiabetesCare.net: In your forums, you use the designation “Diabetes Daily (D.D.) family” for some forum users. Do people who communicate with each other on forums or through online means feel connected to one another?
Edelman: They do. For example, there are times when people have conflict and strife online, just like you do in any family (he laughs), but it really is a family because people are connecting on a very deep level. Diabetes is a very personal and private thing: it is about what you eat; how you feel about your loved ones; how you experience your holidays; and how you deal with issues of mortality and longevity.
A doctor might say to a person with diabetes, ‘you need to cut back on your pasta and carbs.’ Well what if that person’s favorite meal was his grandma’s spaghetti and meatballs, and all of a sudden the doctor implies that you can’t have that dish you grew up on and reminds you of your family? That is a very intensely, private thing. When you talk to people online about these kinds of issues, you do develop a close connection with others.
I do feel like our website is like a large, diverse family that is at times, dysfunctional, but it is also a successful family.
DiabetesCare.net: You have a new initiative, Diabetes Daily University. Can you provide an overview of what it is and what you are hoping to achieve with it?
Edelman: It is an educational platform. It is an opportunity for the visionaries in the field of diabetes education to bring their ideas to the masses that isn’t possible today. It is not to supplant traditional diabetes education or obviously not to supplant your doctor, but to provide a foundation to think about diabetes so you can have an informed and improved relationship with your medical team.
We have found that people taking our first workshop on “Improving Blood Sugars”, has really helped people change the way they think about diabetes and how they approach it. It also provides access to high-quality, organized diabetes education that some people are not able to obtain. Thirty percent of the people taking the course are from outside the United States including places like South America, China, and Africa.
DiabetesCare.net: Your website offers a variety of resources including everything from recipes to forums to the university initiative. What do you see as the next big thing for Diabetes Daily? Video? Something else?
Edelman: The next biggest thing I don’t think is so much a feature—I think we have all that we need—I believe it is this idea of having stronger interpersonal connections both online and offline. There is a great opportunity to take these online relationships people have developed, and then make a difference in their own lives and in the communities where they live.
DiabetesCare.net: Another thing we are seeing is the power of social media and the DOC’s recent role in asking both President Obama and the U.N. to further recognize diabetes. What does this type of advocacy suggest?
Edelman: It allows influencers such as the DOC to mobilize their audiences to make a difference. This can include opportunities to influence legislation, the FDA, international governments, and the organizations that represent people with diabetes like the ADA and JDRF. When you can mobilize the masses, you can really give them a voice and affect policy and programs in a way that best serves that constituency.
DiabetesCare.net: Do you think websites like Diabetes Daily or the DOC at large should be explored by medical providers? And if so, what insights do they offer to these professionals in caring for their patients?
Edelman: Of course. The similar question would be if you are in business, does it make sense for an organization to read what its customers are saying? If you are a doctor, you get these 10 to 15 minute chunks of peoples’ lives. It gives you a cross-section of people, but it is truly a different element to go in and really dive down and find out how diabetes is affecting someone.
I think it is important for providers to go beyond their clinical roles to understand the whole world of emotions associated with diabetes. Some providers may miss the emotional component of diabetes, and when you listen to what people are saying about diabetes in these online communities it really drives home the point how critically important that component is.