I am proud to share that our original research article exploring the impact of social media engagement on life with diabetes is now live online at the Journal of Diabetes Science & Technology. The study, conducted last summer, is titled: “What Are PWDs (People with Diabetes Doing Online? A Netnographic Analysis.”

Netnography refers to the emerging methodology we used, that involves researchers immersing themselves in the environment — much like ethnographic researchers sometimes do in African villages — for an observational “deep dive” into the subject. We observed hundreds of online conversations to identify themes, sentiments, and perceptions. You can read the article to get all the academic details on that.

What I’m most excited about is the boost that our study results can presumably lend to legitimizing the importance of peer support and online community activity in the lives of people with diabetes! AND likewise highlight the importance for the advocacy and industry organizations that serve us.

Let me break that down into a few basic thoughts on our study results:


1. “Show Me the Research”

For years now, I’ve been part of a group of early advocates struggling to get doctors and other healthcare providers to recognize and respect the value of online engagement for their patients. Our rallying cry was that Social Media ought to be ‘Part of the Prescription’ for anyone newly diagnosed with diabetes (or arguably any chronic illness) because let’s face it: medications and a set of physical instructions for treating your condition are not enough! People need psychological, social and logistical help. They need a reality check from other human beings living out in the real world with this difficult condition. And with all the new technology choices, they increasingly need experiential input, and tips and tricks to help them choose and use all this new stuff.

Whatever its downsides, social media allows for a virtual smorgasbord of this type of information and support — available anywhere in the world 24/7, from the comfort of your own home. 

But HCPs have traditionally (and some continue to) push back, citing a lack of data showing that online involvement has any clinical / significant impact. Slowly, we’re gathering a body of research bearing witness to just how powerful SM can be in patients’ lives. 

I’m excited that our most recent study goes far beyond tracking hashtags or keywords, to actually grasp life themes and points of decision-making that are playing out online.  

While there is growing recognition that online health communities can provide “patient insight” to inform research, I believe our study is one of the few that simply aims to observe how PWDs are living their lives online, without any specific agenda, commercial or otherwise.   


2. Life Themes, Of Course!

To many PWDs already active online, the six major life themes we identified may come as no surprise. They clearly overlap, but each stands as an important phenomenon in its own right:

  • Humor
  • Diabetic Pride
  • Personal Relationship with Diabetes Tech Devices
  • Sharing Tips & Tricks
  • Building Community
  • Venting

Our study goes in to quite some detail explaining each of these themes and providing specific examples. We also talk about how one thing can become a catalyst for another… for example, how venting sometimes prompts people to discuss and then co-create positive solutions for their diabetes woes.

When I initially presented this study at our DiabetesMine Innovation Summit in 2017, many people in attendance who are clinicians or industry folk essentially said, “Thank you — there’s a lot of talk about the relative merits of patient social media, but we never really get to see what is actually happening online…” Many folks told us the study was eye-opening and finally brought the human touch to all this fuss about cyberspace.

Note: that’s what happens when you put Communications Researchers (as opposed to Medical Scientists) on the job 😉



3.Tips, Tricks and Hacks

Far beyond commiserating and providing a sense of community, we found proof that PWDs are literally acting as 24/7 tech support for each other, asking and answering questions in a variety of formats.

Of course the incredibly active Nightscout and #WeAreNotWaiting DIY tech communities are standout examples of this. But we found that pictorial and video how-to guides on all sorts of D-related tools and tasks are incredibly prevalent, and we saw people beginning to use the new Facebook Live feature for in-the-moment help as well.

People are asking each other detailed point-blank questions like, “How do you avoid scarring from insulin pump insertion sites?” or “How do you insert a CGM sensor on your arm without help?” or “How do I apply to get a diabetes alert dog?”

Interestingly, we saw many more PWDs asking questions than answering them, indicating a strong “unmet need” for additional real-world education and support.


4. Influencing Diabetes Customers

Related to the last point, we observed plenty of evidence that the social web is enabling PWDs to influence each other’s choices, which impacts the market for devices, drugs, and services.


People are desperately seeking real-world experience and product reviews before they decide to try a new diabetes tool — especially an expensive one like a pump or CGM that will be a multi-year commitment. And while you can read ample product reviews on the web for everything from chewing gum to automobiles, it has been nearly impossible to find this candid feedback on medical devices — until very recently with the advent of patient social media.  

The images and reviews PWDs are sharing are creating waves of influence — literally in some cases to the point of asking each other for specific purchase decision advice (i.e. “Should I get an OmniPod?”).

Of course this transcends comments on general shopping sites like Amazon, because a medical device is such an important life decision!


5. How Companies Can Get Engagement Right

We’ve talked a lot recently about the ‘consumerization’ of diabetes — the notion that diabetes is going mainstream, with patients finally being viewed and marketed to as direct consumers. This shift was very evident in our Netnography study.

When it comes to industry being part of all this online community interaction, we observed that it can be well received if their participation comes across as authentic, and addresses real issues beyond just product marketing. For example:

  • Simply sharing what’s happening in your offices on a given day, ie, “Hey, we’re shooting a video today,” helps put a human face on the organization

  • Letting the public “peek under the hood” of plans and technology by posting detailed graphics illustrates respect and a desire for patient community input

  • Acting as a source of education by providing relatable, useful information in Infographic form, often on Pinterest and Instagram, is highly appreciated

  • Recognizing and supporting hot-button patient advocacy movements (in the absence of conflict of interest) builds tremendous good will


The last sentence of our study Conclusion section states the following:

“Health care providers and industry vendors alike would do well to respect the tenets of patient social media and begin to think of it as an important resource both for PWDs’ quality of life and for critical customer interactions.”

That about sums it up, IMHO.

A huge thank you to the editors of the Journal of Diabetes Science & Technology for recognizing the value of this work.