The Emerging Diabetes Online Community - research paper on Diabetes Online Communities

Community
1

Read the paper! Emerging DOC.pdf (191.9 KB)

The Emerging Diabetes Online Community

Marisa E. Hilliard, Kerri M. Sparling, Jeff Hitchcock, Tamara K. Oser, and Korey K. Hood

Baylor College of Medicine, Department of Pediatrics. Houston, Texas, USA, 77030; SixUntilMe.com. East Greenwich, Rhode Island, USA, 02818; Children with Diabetes. West Chester, Ohio, USA, 45069; Pennsylvania State University College of Medicine, Department of Family and Children with Diabetes. West Chester, Stanford University School of Medicine, Department of Pediatrics. Palo Alto, California, USA, 94305.

Abstract

Background: Diabetes self-management is complex and demanding, and isolation and burnout are
common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes.

Methods: Research and online content related to diabetes online activity is reviewed, and DOC writing excerpts are used to illustrate key themes. Guidelines for meaningful participation in DOC activities for people with diabetes, families, health care providers, and industry are provided.

Results: Common themes around DOC participation include peer support, advocacy, self-expression, seeking and sharing diabetes information, improving approaches to diabetes data management, and humor. Potential risks include access to misinformation and threats to individuals’ privacy, though there are limited data on negative outcomes resulting from such activities. Likewise, few data are available regarding the impact of DOC involvement on glycemic outcomes, but initial research suggests a positive impact on emotional experiences, attitudes toward diabetes, and engagement in diabetes management behaviors.

Conclusions: The range of DOC participants, activities, and platforms is growing rapidly. The Internet provides opportunities to strengthen communication and support among individuals with diabetes, their families, health care providers, the health care industry, policy makers, and the general public. Research is needed to investigate the impact of DOC participation on self-management, quality of life, and glycemic control, and to design and evaluate strategies to maximize its positive impact.

2 Likes
2

I thought that what Google is for. No? I find all my special interest forums by a simple Google search. Am I missing something important here?

1 Like
3

@phoenixbound, research serves a really different purpose from google searching. This is not a paper for people with diabetes to read in order to learn what community they might join, but a study of the utility of such communities, for a larger audience than PWD alone. One of the (many) reasons why it’s important to show that utility is so that communities like this one can gain greater respect and confidence from healthcare providers and industry, thereby giving us, as patients, a louder voice with which to express our needs to those who are tasked with providing for us. Research like this is good for us!

1 Like
4

OK, I guess I don’t get the importance of what you are saying, but that’s OK. :slight_smile: I like the support and question/answer aspect of forums. I am an active member of several forums that give me solutions to problems or allow me to offer my expertise from time to time. No sense all of us going to our graves not sharing info that can help others, right?

3 Likes
5

@phoenixbound… I found my way here by googling Diabetes and Art or some such, because as an artist, my creative life went kaput post dx. This would have been late 2007 or early 2008, I think. At the time the DOC was in its infancy.

It’s hard for us to believe when we have come to cherish and rely on all our DOC connections, but this study is a validation for many of us—maybe only those of us who are a little tech-challenged, I don’t know enough about that aspect. I know that in 2007, it wouldn’t even have occurred to me, for instance, to look for a Bernstein group on FB (which I only joined to keep track of my kids!)…

And in those early days, most of us barely dared to quote the DOC as a source for our info in adjusting our treatment plans. Now, I regularly take TuD info to my PCP and she respects it and we talk about it…

Anyway, this study makes me very proud to have found the TuD Haven early on—though it was a fortuitous accident that I shouldn’t take credit for…still–Manny was a visionary and this study re-enforces that—when I first joined, there were so few members that Manny actually had the time to teach me how to Cut and Paste…LOL…so Bravo! to the DOC, Infiltrators, all!..

3 Likes