Category Archives: Social Media

Eyes On The Prize, People.

March 7, 2013 – 10:00 am

As you’ve no doubt read already, some feelings were hurt this week when the Diabetes Research Institute did a press release touting their new idea, the BioHub. It included a carefully edited 5 ½ minute video (that I’m purposely not sharing here), that finished by trying to give us the feeling that the only thing holding back their idea from becoming reality was the amount of money, or lack of it, that we could raise for DRI. Making the problem worse for some was a pre-release blog post from Diabetes Dad Tom Karlya, who stated in his title “This Could Be It… What We Have Been Waiting For Since Diagnosis!!!!”. Tom has since posted not one, but two mea culpas on his site post-release.

As I’ve alluded to above, there has been much wringing of hands over this thing, outrage at times, and honestly, if I weren’t so busy, I would include all of the links to those posts here. But if I may, let me just say two things about this ordeal, and then it will be finished for me, other than being a reminder of the power of the internet pen and a reminder once again to carefully choose my words.

First, let’s remember: We’re not any worse off than we were a week ago. My life goes on. I still have diabetes, yet I still look with a hopeful eye toward the future. Not so much for me, but for others who are younger than me. If I can do anything to help eradicate this disease from our planet, or make lives better while living with diabetes, I’m all for it. That hasn’t changed, and it won’t change, regardless of whether a momentary research and marketing (or is it marketing and research?) buildup succeeds or fails.

Second: For me, this entire episode seems to show just how remarkable, and powerful, this Diabetes Online Community that we all talk about really is. Remember Kerri Sparling’s words from that Morning Edition piece on National Public Radio back in December? Quoting from the story:

Blogger Kerri Sparling isn’t worried. She says the diabetes online community can tell when something’s fishy. “If we see someone swooping in with their chocolate shake that cures Type 1 diabetes, there’s going to be a voice raised saying, ‘Wait, wait, wait, that’s not true! Or, ‘Don’t come in and spam our community.’ We protect ourselves in that way,” she says.

Isn’t that what’s happened here? Sure… someone with a personal and a monetary interest in seeing DRI succeed got out ahead of a story and in some places, was vilified for it. This may not be true at all, but I suspect both the blog post and the press release on the BioHub were part of the same marketing package. I’m sure that as a result of what we’ve seen this week, both Tom and DRI will be very careful about how they pitch an idea in the future. That’s what is supposed to happen in a situation like this. On the other hand, if you read many of the comments on his own blog, you’ll see that there are many who support Tom and didn’t think they were mislead at all.

This is all good. We need diversity of thought to keep this thing strong. Whether it’s discord or disappointment, when these things happen we need to talk them out. Think them through. Not everyone will agree on every point. But the discussion will eventually bring us to a point where we’ll all be able to move forward.

Oh, and one other thing, and I’m not taking sides here: Don’t forget that ultimately, Tom Karlya’s goal is the same goal we all have. I still have my eyes on the prize. I’m ready to move on. You?
 
 
 

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Drinking the Twitteraid.

December 14, 2012 – 9:55 am

I’m not a big Twitter guy.

I don’t have a smart phone. If you see a tweet from me, it means I’m on a PC or iPad somewhere, logging on and catching up with people maybe once per day. Twitter is another of those social media outlets that I have absolutely no access to from work.

I don’t have a lot of followers right now… right around 100, I think. FYI, I don’t follow people like crazy either. I think it’s my fear of being spammed to death with incessant chatter from people or companies I don’t really know. Of course, that’s what the Unfollow button is for, right? But I usually forget about that. Have you ever unfollowed someone?

Sometimes the old guy gene in my psyche makes me wonder what the stink is about, to borrow a Cheryl Crow lyric. I mean, couldn’t people just e-mail each other? Couldn’t they pick up the phone? I know, that’s so 1998.

But when I open my mind a little, I realize the benefit of Twitter, particularly for people in the Diabetes Online Community (DOC). Every day I see tweets from people I follow, offering words of encouragement and support to each other. And I have to admit to getting jazzed up by the advocacy that I see from time to time. People who are passionate about their cause (our cause), and share their passion 140 characters at a time. I’m also loving all the giveaways (giveaways!) I’m reading about.

I like the photos too, even if it’s your cat getting stuck in the Christmas tinsel again. So many of the bloggers I read seem unreal to me until I visually see something from their lives as it’s happening. Does this mean I’ve drunk the Twitteraid? Maybe so.

And I can’t talk about the DOC and Twitter without mentioning the weekly Diabetes Social Media Advocacy tweetchat. It’s hard to find a seat in that room on Wednesdays at 9:00 p.m. Eastern time here in the USA. But well worth the effort to squeeze in. For a laugh, for some provocative questions, for a new outlook on what someone else is going through. An incredible variety of people, many of whom I’m not following (and who are not following me) surprise me by their insights and their interesting views on dealing with everything diabetes. There really are a lot of different people who consider themselves part of the DOC. And DSMA does an amazing job of bringing us all together and keeping it interesting. There were a couple of times when I felt really down but I logged on anyway, and had my week turned around in the span of one hour. I’m not overstating that. It’s a small initiative that makes a big impact.

Listen… I’m at least a little tech-savvy. I realize I’m doing this in a most-unconventional way. I’m also smart enough to realize that Twitter will probably be replaced by something else in a couple of years. But for now, I’m enjoying the Twitter honeymoon, as long as it lasts.

What about you? Are you digging Twitter? Some other form of social media? Care to turn me on to the next great thing? Leave a comment below.
 
 
 

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NPR Reports on the DOC.

December 4, 2012 – 10:23 am

On Monday, National Public Radio’s Morning Edition ran a story (find it here) that talked about how People With Diabetes are connecting with others via social media. Kerri Sparling of Six Until Me was quoted, as were Dennis Urbaniak of Sanofi, Jeff Chester of the Center for Digital Democracy, and Jason Bronner of the UC San Diego Medical Center.

The piece talked a little about how Kerri connected with the online community; and it also talked about her endorsement deals, her disclosure of such on her site, and whether that’s appropriate. I think the appropriateness was raised with regard to drug companies and medical technology firms, and whether they have undue influence on the people they’re supporting. And whether they are disclosing that too.

So what’s my take on the story? Was it really fair? My feeling is yes.

I’m totally okay with the story and how it was told. I think the reporter, Lauren Silverman, was trying to shine a light on all sides of the issue. That’s what should be done. However, if I may, I’d like to focus on statements made by two people in the story.

First, there was the statement by Jeff Chester of the Center for Digital Democracy: “People do not read disclosures. The FDA and [Federal Trade Commission] need to create a whole new system for disclosing when a blogger or group gets paid by pharmaceutical companies”.

Well, I do read disclosures. Maybe I’m in the minority here. But I’m interested in how someone describes their working relationship with a vendor. From what I’ve read from other bloggers so far, I have reason to believe that people are being honest when something they’re trying out is less than par, if indeed it is. Even if a drug company or medical technology firm is asking for (or hoping for) an endorsement.

That said, I certainly recognize the possibility for companies to try to overplay their hand in working with members of the DOC. I’m okay with the FDA or the Federal Trade Commission stepping in to set boundaries. But let’s not make a blanket statement that may lead people to believe that everyone’s on the take, okay? It’s more complicated than that, and so far, the bloggers and organizations that make up the DOC appear to be well behind the line of inappropriateness (wow, big words).

As far as advertising is concerned… well, we’re talking about blogs here. If you’re reading someone’s blog and you see a logo with a link to look at the latest Accu-Chek Nano® meter, you know that person or entity is being paid for it. I’m also skeptical enough to believe that people aren’t always in love with everything they’re being paid to advertise. Again, maybe I’m in the minority here, but I hope not.

The second statement I really have an issue with is this, from Jason Bronner, a doctor at the University of California San Diego Medical Center. He says: “There’s no proof in diabetes that social networking is helpful”.

I can’t speak for everyone. But I know that statement is absolutely false when it comes to my own experiences.

Through social networking, I’ve not only gotten the support that I’ve never, ever experienced in real life. I’ve also learned a great deal about products, new therapies, and yes, how to properly disclose a working relationship. I’m going to go out on a limb and say that I’m in the majority on this one.

Dr. Bronner does mention later that “We know a lot of patients are on the Internet. Patients are more likely to get information from the internet than they are from the doctor”.

Well, yeah… some of us only get a few minutes every three months with our doctors. We can get hours per day via social media. So instead of “leading a study that will help determine whether social networking can actually help patients manage diabetes”, and making statements like that before your study is complete … why aren’t you researching ways that doctors, diabetes educators, and other healthcare professionals can reach out to patients through social media and actually partner with them to help them achieve their goals?

Of course, if they did, they themselves might find a couple of juicy endorsement or advertising deals.
Which I hope they would properly disclose. #sarcasmintended
 
 
 

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The Fifties.

August 12, 2012 – 9:04 pm

Not the 1950s. I mean living in my 50s. This weekend has been one of reflection. I haven’t been able to get my mind off of where my life is, and how my blog– how social media fits in the picture. Let me explain:

I’m 50 years old now. That’s not particularly noteworthy. I also write a blog. Ditto. But something rather profound struck me this weekend. For the first time,there are a LOT of PWDs who are reaching their 40s, 50s, and 60s without a lot of major diabetes-related problems, and with a lot of access to social media. There are still people with a lot of D-related issues out there. But despite the fact that there are continuing things to worry about, we are living longer, better, more productive lives.

On top of that, the Internet has now grown beyond just listservs, bulletin boards, and AOL mail to include blogging (of course), Twitter, Flickr, Pinterest, Facebook, and more. What does that mean? More than you might think.

For one thing, it means that we get to share our story with the rest of the world. It’s true that the Internet is mostly the playground of those in their teens, twenties, and even thirties. Out of the thousands of diabetes blogs out there, the overwhelming majority are written by PWDs in this group.

But if you’re in your teens, 20s, or 30s… have you thought about the fact that the people in my age group are telling the story you’ll be living in 10, 20, 30, or 40 years? Yeah, it just hit me this weekend.

I hope that we’re telling our story well. And I hope that we’re giving enough information about living at this age, with this condition. Whether we’re doing great or struggling, I hope we’re telling the truth. While I know it doesn’t seem like we’re on the same page when it comes to social media (or is it just me?– it’s possible), I hope you’re still reading about us, and thinking about what it means for your life. And I hope that eventually, we’re motivating you to do what you need to do to make your life better when you reach our age.

I also hope, personally, that if I say something I shouldn’t… if I can improve in some way, if I need to look at something from another point of view… I hope you tell me. I work an IT job Monday through Friday, but I’m still a relative newbie when it comes to social media. I have a lot to learn. Any help you can give me would be appreciated more than you know.

So there’s an interesting dynamic at work here. I don’t really know where things are headed yet. There’s a lot more to be defined in the coming years as we all grow older. I’m guessing I’ll be talking about this again.

Know what? I’m looking forward to it. I may not be the ultimate social media expert, but I know I have something important to say. And I’m looking forward to saying it. Keep reading. Look in on my world from time to time, won’t you?
 
 
 

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