learning curve

Dana Lewis

Social Media for PWDs

by dana lewis

Social media is not an obscure teenage Internet phenomenon as its name might suggest. In fact, social media is mainstream and just by virtue of the fact that you are reading this, you are already a user of diabetes social media. Social media is as simple as it sounds – it refers to any online medium that is social. Examples include blogs; microblogs (Twitter and other sites that allow small posts) social networks (Facebook or MySpace); event sites (Meetup.com); collaborative sites like wikis (Wikipedia) or social bookmarking tools (Google Reader or StumbleUpon); and even video, photo, and audio sharing (Flickr or YouTube). Anyone can use it regardless of age, occupation, or whether you have a Mac or a PC. Social media is basically the technology that supports our need for interaction, connection, and entertainment.

In this “Learning Curve,” we want to provide an overview of some of the offerings social media and the Internet have for people with diabetes – but first, here's some information to help you get up to speed on the topic.

for the social media skeptic

The good news? The first generation of the Internet (Web 1.0) is still around. Web 1.0 is like a “read-only” version of the Internet, where you can search and access information; you can also choose not to interact. The bad news? Web 2.0 is also here and being improved upon, so now most people think of the cutting edge as “social media” versus the stagnant World Wide Web of the 1990s.

the basic building blocks

• A blog is a website where entries or posts are listed in chronological order
• Microblogging is a form of blogging where users provide brief periodic updates (often on a frequent basis throughout the day) and publish them on a platform that can be shared publicly. You’ve probably heard of Twitter, which is a microblogging tool. Updates can be submitted via the web itself or via text messages – on Twitter, we use 140 characters to share a message.
• Social bookmarking (such as delicious.com and stumbleupon.com) allows web users to save, organize and share their bookmarks of web pages on the Internet (vs. their own computers)
• And, a wiki is a collaborative website that allows users to contribute to and edit the content on the website. The most common wiki is Wikipedia.

why social media?

As Kerri explains, social media provides an opportunity to stay in touch with old friends, communicate with new connections, and even interact with your friends and family in a new way. Because social media has few barriers beyond the ability to access the Internet, everyone has the opportunity to build, create, and share content.

For people with diabetes, we know how important it is to know there are other people in the world (and our communities) who have the same condition and are dealing with some of the same issues. Thanks to social media, we no longer rely on “support group” meetings that occur once a month in a public location. You can access and tap into a “support group” 24/7 with the help of a mobile phone or a computer.

patient power

What's better than the ability to reach out virtually, share your highs and your lows, and get support when you need it? Or, the ability to lend your support to someone else who's high (and low, or low then high!)?

If you're having a crummy diabetes day or want to celebrate a good trend on your CGM (and a matching CGM/meter reading), here are a few ways to get social about your experience:

1. Put up a “tweet” on Twitter – 140 characters to broadcast to the world
2. Update your Facebook Status
3. Post on the wall of a Facebook page or group on diabetes
4. Wordsmith your own blog post and/or write a comment on someone else's blog
5. Create a “vlog” – a video of your celebration or expression that can be posted on your blog or on YouTube

A celebration via Facebook Status update

diabetes directory – if only it were that easy!

The beauty of social media for patients can also be the main pitfall – there is so much out there that it can be difficult to discern what sources are reputable and trustworthy. Given that anyone can publish on the internet, this means that anyone can claim to be an expert and try to provide medical advice. How do you know where to find reliable information, and whom do you trust?

If you're looking for diabetes facts, stick with well known and reputable organization sites like the American Diabetes Association or the Juvenile Diabetes Research Foundation or Taking Control of Your Diabetes or Children with Diabetes or the International Diabetes Federation, which you know exists in real life.

If you're reading a blog, check the author – it should be clear whether it's a patient or a doctor or “health expert” blogging. Even if it's a patient blogger sharing his or her own experience, take it with a grain of salt: just like your experience is not a one-size-fits-all prescription, neither is theirs!

Also, look and see if they disclose their relationships with diabetes companies – many of the big bloggers have sponsorship, advertising, or other consulting agreements that could potentially affect their representation of a product or service. However, most are upfront about it so you should see disclosures with any specific post relating to such a product and on a separate “About” or “Disclosure” page.

existing diabetes communities

There are countless message boards, blogs, and sites, but here are some you can start with:

• American Diabetes Association message boards (including message boards for kids & young adults): www.diabetes.org
• Children With Diabetes message boards, chat rooms and mailing lists: www.childrenwithdiabetes.com
• TuDiabetes forums: www.tudiabetes.com
• dLife's Blogabetes has some all-star bloggers: http://www.dlife.com/diabetes-blog/
• on Twitter: check out “#diabetes” using http://www.search.twitter.com
• Juvenation, the JDRF's online community for people with type 1 diabetes

editor’s note

The enthusiastic host of bloggers in attendance at the Roche Diabetes Summit

I had a fantastic time at the Roche Diabetes Summit in July. There were numerous superstars from the diabetes community, and most of them are active online and in social media. They blog on diabetes and how it touches every aspect of our lives. From blogging to tweeting to connecting with others on different diabetes communities, they play a huge role in raising awareness for diabetes. Here are some of the participants (and other people with diabetes!) who tweet away on a regular basis and have a TON of followers:

Name - @username - # of followers
Amy T - @diabetesmine – 1,446 followers
Kerri Morrone Sparling - @sixuntilme – 2,932 followers
David Edelman - @diabetesdaily – 1,009 followers
TuDiabetes - @tudiabetes – 2,642 followers
American Diabetes Association - @AmDiabetesAssn – 1,119
Manny Hernandez – @askmanny – 3,550