Manny Hernandez walked into a pump-user support group for the first time in 2005. He received a misdiagnosis of type 2 diabetes mellitus in 2002, and later discovered that he actually had type 1 diabetes mellitus. He felt overwhelmed by everything he needed to learn to live a healthy life, which led him to the meeting. Hernandez was enjoying the advice and company of fellow patients when he realized something: never before had he shared a room with so many other people with diabetes.
Th e sense of community inspired Hernandez to take action. In 2007, he put his background in Web product management to use by launching two social networks for individuals with diabetes: TuDiabetes.org in English and EsTuDiabetes.org in Spanish. Over the course of the next year, the two online networks grew into a nonprofi t: the Diabetes Hands Foundation (DHF).
“Nobody with diabetes should ever feel alone,” Hernandez explains when asked about the goals of the foundation. Diabetes Hands offers a valuable social component to a patient’s treatment and quality of life that physicians cannot provide on their own. “We off er emotional support and the opportunity to connect to the collective voice and energy to make a difference,” he continues.
DHF also offers an equitable way for people of all backgrounds to get involved in the diabetes community, since a patient only needs an Internet connection. Hernandez, who gave the keynote speech at Th e Endocrine Society’s first Health Disparities Summit in Baltimore earlier this year, explained that such accessibility is important for minorities, which tend to be disproportionately affected by the disease. “Considering that nearly two-thirds of new cases of diabetes are among minorities, particularly Hispanics and African-Americans, we need to place particular emphasis of our efforts on these two groups.” He went on to describe the rising rates of mobile Internet usage among minorities and how this contributes to increased participation in social media.
TuDiabetes.org and EsTuDiabetes.org operate like Facebook for people with diabetes. Users create profiles, post updates, and join groups, among other activities. Doctors and other experts are also encouraged to participate in the online community, which can give them insight into frequent concerns among patients. Hernandez emphasized, though, that DHF’s social networks are not a place to give or receive medical advice — they are instead a place to share stories, find support, and join advocacy efforts. “We work to make everything consistent with best practices, like making sure statements are supported by science and that comments are not prescriptive,” he says.
Although users are not permitted to give medical direction to one another, patients can find curated advice in the form of weekly streaming interviews with diabetes experts and informational resources on the DHF website. A topic is chosen for each interview, and users from around the world tune in to learn more about their disease. Currently, the two social media networks have more than 50,000 registered users and receive 3.5 million unique visitors each year.
The social media movement in the diabetes community has been gaining momentum for some time. Hope Warshaw, MMSc, RD, CDE, a diabetes educator, dietitian, and owner of a diabetes and nutrition consulting practice in Northern Virginia, has been helping people manage their diabetes for over 30 years, and she noticed the movement three to four years ago. “I observed this rapidly growing online community among people with diabetes and thought it was important to open the dialogue between patients and their healthcare providers,” she says.
Her desire to help bridge this divide led her to contact Hernandez and two other advocates in the diabetes online community (DOC), Amy Tenderich of diabetesmine. com and David Edelman of diabetesdaily.com. Together this foursome presented a session at the 2011 American Association of Diabetes Educators (AADE) conference titled, “The Diabetes Online Community: What the Heck Is Going On?” They presented again in 2012, and in August they presented a workshop entitled “Social Media for Diabetes: Step Up to the Genius Bar.”
Warshaw believes that the burgeoning digital presence of the diabetes online community can be valuable for patients’ emotional well-being, as well as their caregivers. “Diabetes can be an extremely isolating disease. It requires 24/7/365 care and is unrelenting,” she says. “The growth online and some of the amazing relationships that have been formed show that this support is both wanted and needed.”
Although additional research is needed to demonstrate positive clinical outcomes of online support, she believes that social networking can be a great supplement to diabetes self-management training and medical treatment. “It’s important that clinicians speak to people about their needs to be supported and let patients know what’s out there,” Warshaw says.
Steven Edelman, MD, professor of medicine in the Division of Endocrinology, Diabetes & Metabolism at the University of California at San Diego and the Veterans Affairs Healthcare System of San Diego, has experienced both sides of the equation as a patient with type 1 diabetes and now an eminent physician in the field of diabetes research and treatment. His firsthand knowledge of the importance of connections among people with diabetes led him to establish Taking Control of Your Diabetes (TCOYD) in 1994 — a nonprofi t dedicated to improving personal control over one’s disease management and increasing education among people with diabetes and their loved ones.
TCOYD is unique in that it organizes conferences for patients rather than experts. Both specialists and inspiring members of the community perform lectures, and health screenings are provided to attendees. Edelman focuses on face-to-face interaction, but claims that social media like TuDiabetes and EsTuDiabetes are important “motivation extenders.” Patients build up energy and confidence at events like those conducted by TCOYD, but may lose the drive to continue self-care once home and alone again. Online outlets help counteract this drop in motivation. “Social media is a great way to maintain momentum,” he explains.
Hernandez participated in one of the TCOYD meetings many years ago, which led to his introduction to Edelman. He has since become a frequent presenter at the Taking Control conferences, and Edelman has joined the Advisory Board of the Diabetes Hands Foundation. Th e two organizations — in addition to many blogs and other resources — complement each other and the care patients receive from their doctors.
Edelman recommends that clinicians explore such online outlets to gain a greater understanding of their patients. “If a physician has any time at all, it is really important that they go on these websites and see what their patients are talking about,” he says, adding that he also believes that doctors should be recommending social media tools to patients with diabetes. “It could help clinicians too because an educated, motivated patient is much easier to take care of.”
Of course, some blogs and social media tools are not as well curated and should probably be avoided. Taking a look at the many websites for people with diabetes can help providers create a list of safe sources for their patients rather than allowing patients to explore on their own and possibly fall victim to Internet misinformation.
From a Distance
Still, such online data gives a glimpse of future possibilities for diabetes care. In addition to the positive effects of online community, similar tools may soon reduce the cost of treatment and help address our physician shortage. “When you deal with people with diabetes, you don’t need to see them physically most the time,” Edelman explains. “It can help keep people out of the hospital.” Remote care appears to be increasing in prevalence day by day, and fewer in-person appointments and hospital stays leads to more affordable care and less of a time commitment from clinicians.
At present, the Diabetes Hands Foundation is focusing on patient interaction and advocacy. Creative use of technology has allowed Hernandez and his colleagues to provide hope for a better life for those living with diabetes, rather than getting involved in medical research. One short-term goal, according to Hernandez, is for physicians to “feel comfortable about the value of these networks and to start talking to their patients about it.” Th e growth of the diabetes community online cannot be stopped, and so familiarizing oneself with these activities may be wise.
— Mapes is a freelance writer based in Washington, D.C., and a regular contributor to Endocrine News.