Proof is in the People
By Kerri Sparling
Earlier this month, I was interviewed by NPR for a story about diabetes and social media, which focused on how pharma and patients interact in this medium. The NPR article referenced a quote from Dr. Jason Bronner that ruffled feathers not only in the diabetes online community, but also in many other patient communities across the web. Here's the passage in question:
"But what are patients getting out of social media? It's unclear whether connecting online is helpful for adults treating diabetes. 'There's no proof in diabetes that social networking is helpful,' says Jason Bronner, a doctor at the University of California San Diego Medical Center. He's leading a study that will help determine whether social networking can actually help patients manage diabetes."
I wish the focus of that NPR piece had been on the community. Because even though Big Pharma (and its medical device friends) can be an important group for patients to interact with in efforts to influence new product development and research, the most important interaction is between patients and, well, patients. The diabetes online community may serve many communication purposes, but at the core, it’s built for connecting people to people.
What are patients getting out of social media? I hear this question being raised by researchers and healthcare professionals and all kinds of voices across the caregiver spectrum, and I am filled with frustration at the lack of data that proves the positive impact of patients connecting with other patients online.
I spoke with a few fellow people with diabetes in the online community about their take on social media and their health. Their responses were poignant, but not surprising. Diabetes isn’t just about A1c values and eye exams. There’s more to managing this disease than lab work. Diabetes can have serious emotional and psychological aspects, and keeping tabs on those parts of the condition can be a key – perhaps the key – to staying tuned in and on task with what needs to be done physically. Feeling mentally healthy, for me, leads directly to better (or, as my endocrinologist likes to call it, “more compliant”) diabetes management.
Cherise Shockley, founder of the #dsma Twitter chat for people with diabetes and living with LADA since 2002, feels confident in her A1c as a result of interacting with fellow patients. She says, “Social media influenced positive outcomes with my diabetes management by allowing me to have constant contact with my peers. My A1c continues to stay below the recommended 7%.”
Briley Bosivert, diagnosed with type 1 diabetes at the age of three, feels that social media has affected her A1c as well, and the emotional impact of that number. “I was diagnosed in 1989 when I was three years old. Right after I joined the diabetes social media world, I had an A1c in the high 8s. [As a result of connecting with other PWD], I'm more motivated, educated, and aware of the decisions I make every day. These decisions are made by me, but understood and supported by many friends who live all over the world and in my computer. Within a year, I had it down to 7.2, and while it hasn't stayed there, I am more accepting of fluctuating A1cs with the emotional support of the social media world. “
So does social media help people achieve better A1cs? There isn’t much in terms of concrete, clinical research that backs this claim up, but the anecdotal evidence is mounting day by day. And why? Why are people who are turning to social media for support achieving more positive health outcomes?
“I am more informed and more prepared when I see my doctors. I can ask about new procedures, medicines, and technologies I learn about through social media,” said George Simmons, who was diagnosed with type 1 diabetes in his teens, over twenty years ago. Renza Scibilia, living with type 1 diabetes in Melbourne, Australia, leans on social media for information on new technologies as well. “It’s also been incredibly useful to learn about new and different devices and management options that may not be available in Australia, or to hear from people using recently-released devices,” she said. “I am due for a new pump and I spent a lot of time reading blogs and ‘talking’ with people about their choices, preferences and advice. It helped me make an informed decision about the pump and CGM I will be using from next year.”
Manny Hernandez, founder of the diabetes social network TuDiabetes, has used social media to make treatment decisions as well. “I kept postponing my decision to talk to my doctor about getting a Continuous Glucose Monitor until I saw a significant number of people on TuDiabetes talk about the kind of accuracy they were seeing in their Seven Plus CGM. Another example that comes to mind was the day my insulin pump failed a few years ago (surely enough, an extraordinary event that happens very rarely): the outpour of support I received was phenomenal and VERY important to me, since I was fundamentally freaking out.”
But it’s not just about social media influencing lab work results and decisions about technology. Patients connecting with other patients breed support, empowerment, and a feeling of a community that understands the nitty-gritty of diabetes. Cherise stated that she “used to ignore the signs of diabetes burnout. But being able to vent or share my thoughts on different platforms, like Twitter (see learning curve in diaTribe #17 for more information about twitter and how to use it) and Facebook is very encouraging. Reading comments or tweets from people around the community has helped me overcome diabetes burnout and the stress of managing my condition.”
Renza also turns to Twitter, and other social sites, for support. “Social media has made me feel part of something much bigger than my own ‘diabetes life.’ Probably where social media has been the most beneficial with health outcomes is when I am feeling burnt out or lacking motivation with my diabetes care. I feel inspired by the people I’ve ‘met’ online and know that words of encouragement and support are only a tweet or a Facebook message away.” Manny shares a similar story, stating, “Both, in terms of catching you when you are falling (or down) and as a source of valuable shared insights from other people's experience, I can say diabetes social media has been instrumental in helping me manage my diabetes.”
Knowing that you aren’t alone with diabetes, and that there are others who share the same struggles and triumphs, can truly make a huge difference in how a person with diabetes views their condition. Scott Johnson, diagnosed with type 1 diabetes at the age of five, believes that sharing our personal stories has a significant impact on his diabetes management, and the diabetes management of others. “Social media has shown me countless examples of people living very well with diabetes. Those examples inspire me to try my best to care for my diabetes. These folks are struggling with the same things I wrestle with, and the fact that they find a way to do it shows me that I can to."
Echoing that sentiment, Kim Vlasnik – diagnosed with type 1 at the age of six – finds a similar thread of support in social media. “Being able to connect with other people with diabetes online has helped to reshape how I feel about, and look at, living with this disease. The isolation I felt in the past has been replaced, piece-by-piece, by the support, encouragement, and shared experiences of others. Knowing that there are other people out there too that wear an insulin pump, check their blood sugar in public, have to jump through hoops with insurance companies, and have to count the carbs in every single bit of food they eat helps me feel less weird about having to do all of that myself. Community is a powerful resource for every aspect of my health - physical, emotional, spiritual."
So does it matter? Is there proof that social media has a positive role in diabetes management?
Through connecting online, and in person, people living with diabetes have concrete proof that they are not alone, and that there is health worth fighting for, even after a diabetes diagnosis. Social media has saved lives in the diabetes community. It has helped people who are struggling with their diabetes to take control and improve their health. It shows people that there isn’t such a thing as a “perfect diabetic,” but there can be an educated and determined one. It lets people know they aren’t alone in the ebb and flow of their diabetes management. It doesn’t encourage people to wallow in their troubles, but serves to inspire them to do the best they can, and to seek out the best healthcare they can find, both at home and in their doctor’s offices. A strong support system goes a tremendous way in making a difference for someone living with diabetes.
I’m thankful that researchers like Dr. Bronner are conducting studies, and I hope that the results prove what we as a community have found, but while we wait, we continue to share our personal evidence of the positive impact of social media. For now, the evidence is anecdotal. Eventually, the studies will show what we, as part of the diabetes community, have felt all along: personal connections between patients matter. The proof, for us, is in the people.