A controversial TechCrunch post recently declared: we may no longer need doctors, just algorithms. I don't know about that, but as a person struggling with a chronic condition each day, I think we mostly need each other.
I'm convinced that I am healthier because I'm active in the diabetes online community. Thanks to the wonders of social media and online networking, I have a better handle on my D-management than I would if I weren't "plugged in" the same way.
Online peer support has motivated me to become more open about my life with diabetes and hold myself accountable. A couple of times, that heightened self-care has resulted in dropping my A1C by an entire percentage point (!)
But it's all anecdotal, and doesn't pass as "scientific evidence" that might convince medical professionals of social networking's true potential to aid in disease management. Not yet, at least.
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While there are a number of general studies that point to "social media initiatives" making patients "more engaged," there's little real data on how networking improves outcomes for us specifically in the Diabetes World. According to a new review in the journal Diabetic Medicine, "the evidence is too limited and inconsistent to support firm recommendations."
We believe that needs to be changed! Luckily, many experts agree, as formal research on this topic is finally starting to get more attention among academics.
Dr. Joyce Lee, a pediatric endo who is director of research for Glu, a new combined data repository and online community that is also pushing to gather more data about the DOC's impact on patient health, sees great potential for these studies.
"It is clear to me that social media provides patients with type 1 diabetes much-needed support and the opportunity for peer-to-peer education. We definitely need more research to study if and how it can improve health outcomes for the diabetes community," she wrote in an email to the 'Mine.
So far, many of the studies that do exist tend to be focused on "structured" online platforms created by those in the medical profession, vetted by doctors, and aimed more at managing data and communicating with physicians than actually fostering organic online peer support.
Remember our report on the American Diabetes Association's Scientific Sessions earlier in the summer? Well, the handful of studies and online platforms discussed there mostly involved these same "safe" and structured resources. While it may not symbolize what the broader DOC can accomplish, it's good to see that researchers now have social media on their radars.
A Structured Study Example
One structured system is being evaluated at the University of California at San Diego (UCSD) School of Medicine by clinical professor Dr. Jason Bronner, an internist at San Diego Health System. He's leading a clinical trial evaluating whether the use of social networking can improve patient-physician interactions and the patient's overall health and well-being.
The system is HIPAA compliant and compatible with the UCSD provider network. It provides self-monitoring tools as well as evidenced-based education customized for the specific person, and each PWD will be monitored for the number of times they access the site, the length of time they're online and how they interact. The site also tracks patient-input measures of weight, blood pressure, and A1C.
Participating PWDs are given an intro to the site and encouraged to use it, and then left on their own for three months. The researchers check in at the three-month mark to assess the person's level of usage (did they drop off the site?), plus how they are faring with their diabetes management, knowledge, skills and attitude.
Bronner's group is currently recruiting for the clinical trial, which will include 200 participants for a period of six months, and is not restricted to the UCSD community. Bronner said they already have about 40 participants, and they're trying to get approval now for expanding recruitment to the local Veterans Affairs hospital. Enrollees' medical records will be checked to ensure an accurate diabetes diagnosis and a few other criteria: adequate Internet access, English-speaking, and no mental issues such as dementia. Nearly all of the participants so far are type 2.
"Social networking provides a common way for patients with chronic disease to learn about their condition while interacting with others in similar situations," Bronner said. "As opposed to open networks, the use of this tool allows us to ensure that the medical information they receive and share is accurate, safe and absent of advertising."
Launching Unstructured Studies
There are also some studies looking at the more "unstructured" online universe.
Diabetes educator and nurse practitioner Michelle Litchman at Wasatch Internal Medicine in Salt Lake City, Utah, who sees patients both in the clinic and house-call settings, is one of those professionals trying to examine the health impacts of patient-led social media. As a PhD student at the University of Utah, Litchman is doing her dissertation research on online peer-to-peer health connections among PWDs. Specifically, she's studying how TuDiabetes.org affects the management behaviors of people with diabetes.
This is a two-part study. The first is an online survey about TuD use, including 139 questions (whew!), and the second part will include interviews with Baby Boomer DOC members to specifically identify how they use the online resources now and how that might evolve as they age. The survey will remain open until 1,000 people have responded, and as of press time, 95 people had taken the survey and 16 had agreed to be interviewed.
Litchman took an interest in this topic after she and a colleague had the idea to co-host an in-person "diabetes mixer" event at a local restaurant. She found it amazing to see how people bonded over having diabetes, and the information they were willing to share with each other.
"There's an immediate need for research about online patient communities as they are becoming more popular," she said. "Healthcare providers need to be educated about these communities, how they impact people, and what can be gained and learned from them."
Litchman has observed that many in the medical community assume social media is "for kids" and so she's excited to share results of her study once finalized. So far, she's had responses from PWDs ranging from 18 up into their 80s. A majority are type 1s at this stage.
I took the survey recently, and while it was a bit long, I went through it for the benefit of this important research. I sent her a note letting her know that I thought the sole focus on TuDiabetes was awfully narrow; it would have been beneficial to include other platforms like Twitter and blogs. Michelle said she observed that herself after submitting her TuDiabetes-specific proposal to the dissertation committee, but it was already too late to expand the focus. She also worried that some of her dissertation committee members might have been less inclined to approve the study, as the idea of Twitter and Facebook health impacts make some academics uncomfortable since they're unfamiliar with it — how ironic is that?!
Litchman plans to do more broad research on those platforms down the road.
Online Impact to IRL?
One of our fellow DOCers Amanda Harvey at the University of Arkansas for Medical Sciences AHEC-North Central is also planning a study of the health benefits of the DOC. While the project is still under review by her department's governing board, she's pitching a research study that will focus on describing how people with diabetes, their loved ones and others on our support team use social media for chronic disease self-management.
The four components of the study are: an online survey, personal interviews, focus groups, and a DSMA transcript analysis. The trick will be translating what people say about social media use to how it incentivizes them to make changes to their D-routines in real life (IRL).
Some of the initial groundwork for Amanda's project was laid a year ago in Kansas City, when about two dozen DOC members (myself included!) got together for Simonpalooza (a "tour" by an Australian online diabetes advocate) and one evening answered a survey about our own online activities.
Like me, Amanda has personal experience with the DOC and knows firsthand the benefits it has on our health. We can't wait to see what comes from her research!
These are just a few small examples of ways that people are beginning to study the impact of social networking on life with diabetes.
I wouldn't be surprised if the results bring a variety of things to light; after all, there are many different reasons we all get started in the ever-expanding DOC — for peer support, general venting, specific disease information, or learning the ropes after a new diagnosis of whatever type. We come at this from different perspectives, and the online platforms we use may vary. We have a lot to learn about the real data-driven benefits of this new 21st century communications channel, and we at the 'Mine are happy to see studies and more attention being directed here.
So... what do you all think about the D-management impact of social media, and what have you found to be the most behavior-changing element in your own life?