What Are PWDs (People With Diabetes) Doing Online? A Netnographic Analysis

Abstract

Background:

Social media have become a crucial channel for patient empowerment and peer support. New qualitative research underscores the fact that this “support” transcends mental health concerns, to actually provide patients with important practical tips and tricks for diabetes self-care, and product selection/decision-making information from peers.

Methods:

Netnography is an emerging methodology that applies an ethnographic research approach to studying activity on the social web. Researchers embed themselves in the online environment to take an observational “deep dive” into online conversations to identify themes, sentiments, and perceptions. Using this methodology in summer 2017, a team of researchers captured and analyzed hundreds of diabetes-related posts on prominent platforms Facebook, Twitter, YouTube, Instagram, Tumblr, Pinterest, Reddit, and Quora.

Results:

Our team identified 6 major trends, or “life themes,” in diabetes patient social media, providing insights into patient sentiments and needs. A topology of social media channels emerged, indicating which platforms are used most often for each life theme.

Conclusions:

Findings indicate that social media provides a significant source not only of moral support and camaraderie, but also critical education on thriving with diabetes. Importantly, we observed strong evidence of peer influence on patients’ therapy and diabetes technology purchasing decisions.

Real-world behavioral studies aim to advance knowledge about the impact of diabetes self-management education and support, drivers of healthy behaviors, and how PWDs can stay more actively involved in their health.¹

In today’s digital world, PWDs are using a variety of text, images, videos, and now also livestreaming via Facebook Live to express their needs, wishes, frustrations, failures, and successes; to provide camaraderie and mentoring; and to share their detailed experience and advice in an unprecedented 24/7 stream of consciousness. Studies show that this continuous stream of social, emotional, and experiential support is generally positive and helps improve patient care.²

Therefore, it behooves researchers to mine activity on the social web, where patients are quite literally living out their diabetes perspectives and behaviors on a daily basis.

To understand PWD activity on the social web and its impact, we believe a qualitative approach that delves into lived experience provides much richer insight than the common methods of tallying search terms or key words.

The purpose of this study was threefold:

1. To essentially “pull back the curtain” on what PWDs are doing on the social web by observing and analyzing the broad landscape

2. To promote true understanding and empathy among those who work with diabetes, but don’t necessarily live with the illness themselves

3. To help provide a basis for the SM activities of organizations dealing with PWDs—from clinics to drug companies to established nonprofit advocacy organizations that represent patients de facto, but aren’t always able to channel their voices

Methods

Netnography is a digital observational qualitative research methodology that takes an ethnographic approach to studying media and the social web.

Pioneered by Dr. Robert Kozinets of the University of Southern California, netnography is described as “an interpretive research method that adapts traditional observation techniques of anthropology to the study of interactions and experiences manifesting through digital communications.”³ Netnography is described as “a specific set of related data collection, analysis, ethical and representational research practices, where a significant amount of the data collected and participant-observational research conducted originates in and manifests through the data shared freely on the Internet, including mobile applications.”³ It treats online conversations as data to provide deeper insights than traditional hashtag and Word Cloud tracking⁴—which simply categorize commonly mentioned terms.

As with traditional ethnographic research, netnography researchers embed themselves in the environment—in this case by going online, thoroughly looking around and recording the topics, sentiments, and perceptions being communicated (Figure 1).

Figure 1.

Netnography.

Figure 2 provides a quick view of how netnography compares to other research methods. In this matrix (Figure 2), you can see that netnography falls in the quadrants of both broad sampling and high insight—the best-case scenario for meaningful results. This methodology has been used successfully to bring highly valuable insight into customer sentiments on brands like Listerine, Campbell’s Soup and Allianz insurance.⁵

Figure 2.

Value matrix for netnography.

Netnography and related methods have been used to research health topics, such as nonmedical use of pharmaceutical opioids,⁶ ketamine use,⁷ patient discussions about cosmetic surgery,⁸ pro-anorexia online communities,⁹ and UK general practitioners’ views on health policy changes.¹⁰

In the case of type 1 diabetes (T1D), it was important for our research team to understand disease basics and have some core familiarity with medical terms and brand names, in order to make sense of what they were seeing. Therefore, for data collection we employed a team of four researchers that included two college students who live with T1D themselves, but were not previously active in the diabetes online community.

Data collection was conducted between June and October 2017 in five rounds. The initial two rounds aimed to qualitatively identify prominent themes. Rounds 3 to 5 focused on adding depth to the initial findings in each area.

Our research team selected and evaluated roughly 450-500 social media content pieces in total, from eight different platforms: Facebook, Twitter, YouTube, Instagram, Tumblr, Pinterest, Reddit, and Quora. One key selection criteria was the impact of a given post, measured in number of shares, likes/thumbs-ups, and comments. At least 40 posts were reviewed from each platform, with significantly more from the four channels used most by people with diabetes: Facebook, Twitter, YouTube, and Instagram. For the purpose of data gathering, each SM platform was accessed by a minimum of two researchers.

All four researchers worked together to identify themes across all platforms. A theme was deemed prominent when a topic was presented multiple times and received a significant amount of comments, shares, likes and other reactions. The research team met after each round of data collection to discuss emerging themes and build consensus on any discrepancies.

While netnography calls for researchers to “embed themselves in the environment,” the meaning in this case is to surround or implant, for purposes of observation only; the researchers did not participate or engage in any social media related to the study. Their activity was limited to viewing content and gathering data.

Since the researchers did not actively participate in any social media, but instead only viewed content and gathered data, no bias was added.

Results

As we began exploring these social media platforms, three general observations emerged:

• Globalization of the conversation—patients are interacting freely across borders and time zones in ways never seen before

• Viral phenomenon—the quick pick up and spread of some news/topics creates “buzz cycles” that are impossible to ignore¹¹

• Evergreen information—some problems persist, and the patient community continues to address them over time

Six Vibrant Themes Regarding Life With Diabetes

Most importantly, our team identified six themes that PWDs regularly express on the social web. These themes clearly overlap, but each stands as an important phenomenon in its own right.

We also found that each theme gravitates toward one or more specific SM platforms, and pertinent hashtags are often created to flag the topic (Figure 3), making it easier for others to find and chime in.

Figure 3.

Six life with diabetes themes on social media.

Theme 1: Humor

There is widespread sharing of items that look at the lighter side of living with chronic illness, notably many memes that are popular and fun. These also often start conversations about real challenges in the lives of PWDs—via comment threads that can run into the hundreds and continue to be active for months or even years after the original post appeared.

Humor helps build a sense of camaraderie, as in, “whoever thinks this is funny too understands me” (Figure 4).

Figure 4.

PWD social media trend—humor.

We found that humor also offers a great vehicle to inform and educate the general public about diabetes in a compelling way (ie, humorous videos). For example, a brief PSA video from an Internet sketch comedy show called Studio C was filmed as a mock sitcom, in which a group of friends is hilariously misinformed about their buddy’s T1D. This video had over 2 million views, and over 1,900 viewer comments by the end of our study period (mid-October 2017).

The main platforms we observed being used for diabetes humor are YouTube, and Facebook, especially the well-visited Type 1 Memes page created by PWD Kayla Brown.

Theme 2: Diabetic Pride

SM is allowing and encouraging PWDs to be “out and proud” with their illness, using hashtags and photos to show off their gear and lifestyles.

The JDRF-created hashtag #T1DLooksLikeMe became core to this theme (Figure 5), with thousands showing off the amazing feats they can accomplish despite T1D.

Figure 5.

PWD social media trend—diabetic pride.

We also saw some extremely popular YouTubers using their platforms to go public with their diabetes and show there is no shame in this disease. For example, the YouTube make-up artist Alexys Fleming of MadeULook created several videos about her T1D; she is using her platform to inform the public and show that there is no shame in this disease. The initial video in which she described her diagnosis had over 2.5 million views, and more than 300 comments by the end of our research period.

We also saw many people displaying and even celebrating their diabetes in everyday contexts that have nothing to do with their actual health care—like decorating their graduation cap with messages of diabetes pride.

We could actually witness other PWDs being encouraged by this and responding in kind as streams of comments on these posts would grow in real-time.

There are some specific hashtags that appear to scream “diabetic pride”—most notably #diabadass, #diabeast, and #diabetestattoo. The latter flags a whole growing subculture of people showing off their diabetes tattoos and sharing information about the experience and how to get one. In fact, whereas earlier conversations were about fear (“will I get an infection?”) we found a bold and positive approach. At the Facebook page DIABETIC INK and dozens of boards on Pinterest, PWDs can shop for their favorite designs.

This all culminates in a sort of counterculture of “shared pride in our illness” or “what makes us collectively different makes us strong.”

The main platforms these kinds of D-pride messages are Instagram, Twitter, and online networks (notably the new and lively Beyond Type 1 community).

Theme 3: Personal Relationship with Diabetes Technology

PWDs are publicly embracing how integral their diabetes devices are to their lives, taking joy in ownership and sometimes even giving their insulin pump or CGM a pet name.

The #showmeyourpump hashtag started by pageant winner Sierra Sanderson has encouraged multitudes of PWDs to actively show off how they wear these devices on their bodies and live with them (Figure 6).

Figure 6.

PWD social media trend—personal relationship with devices.

We found that various posts and videos are providing a window into how others might wear and use these devices—sometimes quite unconventionally. For example, a middle-aged man sharing an image of his CGM sensor placed on a hairy calf, just above his athletic sock (Figure 6). This is “off-label use” according to the FDA,¹² but may be the most comfortable or even accurate option for someone in a particular age group or walk of life.

Many PWDs talk about being grateful for these tools, and there are also a lot of “thumbs-up” congratulatory moments with these devices being shared, as in: “Look how great I did with my #BGnow (blood glucose control) today! My device proves it!”

The main platforms for this type activity are Instagram, Twitter, Facebook, and Reddit.

Theme 4: Sharing Tips and Tricks

PWDs are literally acting as 24/7 tech support for each other, asking and answering questions in a variety of formats. 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?”

Pictorial and video how-to guides are incredibly prevalent (Figure 7), and we saw people beginning to use the new Facebook Live feature for in-the-moment help as well. For example, in mid-September 2017 when a University of Nebraska student held a Facebook Live video session showing how she inserts her CGM sensor, it had almost 1,000 views within just four hours.

Figure 7.

PWD social media trend—tips and tricks (tutorials).

Grassroots product tutorials that make the technology so relatable for PWDs are also quite prevalent and well-liked. One young woman who posted a 13-minute YouTube tutorial on “Insertion of the Medtronic Enlite CGM Sensor” had roughly 175,000 views as of mid-October 2017. In contrast, the manufacturer’s own video tutorial had less than half as many views. We found a huge, growing body of these patient how-to videos by young people reviewing and talking about insulin pumps alone on YouTube.

On scary topics like complications, PWDs seem to gravitate toward more formal medical sources. As many of these are also social (allowing comments), they become hubs for rich conversation about treatment and coping mechanisms. PWDs express feelings of fear, and thankfulness for finding others who are also struggling with these complications “IRL” (web speak for “in real life”).

Some unique “tools” get a lot of traction, like DADs (diabetes assistance dogs). This is a very popular topic people are sharing about, creating a huge amount of conversation around practical questions like “Where can I get one?,” “What’s the cost?” and “Could I train a med alert dog myself?”

For example, one poster described how they spit on cotton balls and freeze them in containers, to use later in dog training; they hide the balls for the dog to find to learn the importance of the scent of their master’s saliva (Figure 8).

Figure 8.

PWD social media trend— tips and tricks (how-to’s).

We found that many PWDs seem to even be getting their news from each other on platforms like Instagram—where many photos are posted of new products or even clinical trial activity with a small snippet of information about this new cutting-edge treatment or research. This spurs a whole thread of conversation—with many thanking the original poster for sharing the news.

On Pinterest in particular, we see a flood of informational infographics. While many of them are just about basics like the prevalence of diabetes, some groups are creating practical visuals for patient learning. Meter and app company One Drop, for example, has been successfully using the Pinterest platform to feed patients useful information about A1C, diet and other topics in a very clear, visual, easily digestible way (Figure 9). They receive many “likes” and positive reactions to their educational infographics.

Figure 9.

PWD social media trend—tips and tricks (education).

On the more text-based, informational Q&A platform Reddit, we found a plethora of people sharing very detailed diabetes tips and tricks for everything from adjusting insulin doses to restarting a CGM. Likewise, the newer Q&A platform Quora had over 175,000 followers of the term #Diabetes with over 9,000 questions posted as of late October 2017.

Notably, we observed more PWDs asking questions than answering them, indicating a need for additional real-world education and support.

The main platforms for sharing tips and tricks are Reddit, online community sites (notably Beyond Type 1), and Facebook.

Theme 5: Building Community

This theme permeates all the others. The feeling expressed is that SM is place PWDs can go, any time of day or night, to be among compatriots, seek immediate companionship or call out for help.

For example, when a PWD on Tumblr posted, “It’s 4:50 am and my BG is 38, my arms are numb” (Figure 10), the call for help got 74 rapid responses. When another posted, “I need a dia-buddy, someone to text me & I’ll do the same. Takers?” there were 61 responses.

Figure 10.

PWD social media trend—connecting through community.

We saw numerous references to a shared language of diabetes, that is, “Things Only a PWD Would Understand” (Figure 11) and numerous PWDs seeking mentors or “dia-buddies.”

Figure 11.

PWD social media trend—building community (a common language).

We discovered that type 2 PWDs seem to be most active creating community on Instagram, where they’re sharing challenges around food and weight loss (Figure 10)—along with encouragement to keep up the good fight on eating right. There was a lot of crossover between the hashtags #Weightlossjourney, #Weightlosssupport, and #Type2diabetes.

When it comes to industry being part of this community interaction, we observed that it can be well received if their participation comes across as authentic, and addressing real issues beyond just product marketing. A few examples from diabetes data tool developers (Figure 12) illustrate:

Figure 12.

PWD social media trend—building community (industry involvement).

• 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

Companies can also support patient advocacy movements in meaningful ways, especially on Twitter, which is now used broadly by individual PWDs and grassroots groups to organize and disseminate collective action.¹³ For example, Tandem Diabetes fostered good will when it stood up for patient choice by championing the hashtags #patientsoverprofit and #mypumpmychoice (Figure 13). Clearly this is in Tandem’s economic interest as well, but the responses showed that the patient community appreciated their embrace of this hot-button advocacy issue.

Figure 13.

PWD social media trend—building community (shared fixes).

The main platforms for community building are Tumblr, Facebook, Twitter.

Theme 6: Venting

We observed plenty of evidence that SM is an ideal platform for cathartic communal complaining. It offers an interactive channel that validates people’s experiences.

For example, British YouTuber Blake Steven’s video “Dumb Sh*t People Say to Diabetics” had nearly 73,000 views by October 23, 2017. It also garnered and 990 viewer comments, beginning with, “Damn, you couldn’t have said it better” and “My whole life if is in that video.”

We also observed that venting can lead to action—like crafting a homemade diabetes carry case that lets PWDs express frustration in a tongue-in-cheek way (Figure 14)—or taking the opportunity to spread public awareness and “teaching moments” about diabetes.

Figure 14.

PWD social media trend—venting.

For the latter, one group posted an updated version of the ‘Diabetes Etiquette Card’ originally created by the Behavioral Diabetes Institute, to help non-PWDs avoid saying offensive things to those living with diabetes (Figure 15). Within the first 50 minutes of posting, this Card was shared 232 times and garnered 227 reactions. A few hours later, the post had 650 shares and 581 reactions. All comments were positive. This is an excellent example of how an SM community moved quickly from bitching (venting) to a positive conversation about a helpful fix.

Figure 15.

PWD social media trend—venting (with solutions).

The main platform for venting is Twitter.

Discussion

Meeting Unmet Needs

From these themes, we surmised that PWDs have certain core needs that are being met—at least to some significant degree—online. That is, SM provides:

• A platform for sharing the realities of living with diabetes

• A sense of belonging, ie, feeling “part of a tribe”

• A sense of accomplishment—conquering challenges and celebrating wins

• A source for peer-reviewed products and hacks

• Answers and tips PWDs don’t get from health care providers or industry

• Improved understanding from people without diabetes

“Consumerizing” Diabetes

Possibly the biggest metamorphosis that SM has brought about for PWDs is turning the traditional patient experience of shame and isolation on its head. SM allows PWDs to connect and communicate with each other in new ways. They are sharing everyday practices and extraordinary feats, illustrated with bold images, that help change their self-perception from “patients” (implying helplessness and dependency) to simply people with shared needs as consumers of specific medial products.

Conclusion

Patient SM appears to be filling critical gaps in the health care system for PWDs by providing much-needed real-world support and education anytime, anywhere.

The social web is also enabling PWDs to influence each other’s choices, which impacts the market for devices, drugs, and services.

This influence is played out in the images and product reviews PWDs are sharing—literally in some cases to the point of asking each other for specific purchase decision advice. This transcends comments on general shopping sites like Amazon, because a medical device is such an important life decision.

Health care providers and industry vendors alike would do well to respect these tenets of PWD SM and begin to think of SM an important resource both for PWDs’ quality of life and for critical customer interactions.

Study Limitations

Inherent to any qualitative research method, the results of this netnographic study are not statistically representative of the full body of data.

The netnography method should be further explored for its potential to identify the sentiments and daily experiences of people living with diabetes and other chronic health conditions.