Tag Archives: social media

#CWDTech 2013 Part One.

February 4, 2013 – 12:08 pm

I’m a little late posting today… I stayed up late last night celebrating the Baltimore Ravens super bowl victory. Yay Ravens!

I didn’t get much sleep on Friday or Saturday either. The Great Spousal Unit and I were in Crystal City, Virginia (just across the river from Washington, D.C.) for the Children With Diabetes Focus on Technology conference. It was my first time at an event like this in at least a decade.

There is so much to talk about. I have to admit to suffering from a bit of information overload. Today, let me just talk about what I picked up from the sessions I attended. In part Two, I’ll try to cover interactions outside of the scheduled content.

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So let’s start at the beginning. The opening keynote was a dynamic talk from Dr. Ken Moritsugu, a former Surgeon General and Deputy Surgeon General who is now serving Chairman of the Johnson and Johnson Diabetes Institute. Dr. Moritsugu explained in great detail the importance of being an informed health consumer. There’s a lot of misinformation out there, and we need to do our best to separate fact from fiction. According to Dr. Moritsugu, it’s important to “access, understand, and use health related information to make sound, thoughtful health decisions”. What does that mean? It helps to remember three things:

1. Consider the source – Are you reading something from the Centers for Disease Control or World Health Organization, or is it from the “latest dream cure” website that promises much and delivers nothing in the way of information?

2. Risk is relative – Sometimes, a headline can grab our attention. But there’s often more to a story than just the headline. So when you see something like “Scientists find a link between breastfeeding and Type 1 Diabetes”, do the research. Was the scientific study realistic? Was it done on a large, diverse sample size, or did the subjects of the story come from a smaller subset of data that really doesn’t apply in the real world? Sometimes, the answers will surprise you.

3. Don’t forget to communicate with healthcare professionals – This is great for me. Sometimes my endocrinologist has additional information on something I just read about quickly online. Sometimes, she can go back and check things out if I have a concern about something, and then we’ll discuss it either in an e-mail or at my next appointment. Hopefully, you can count on having a two-way conversation with your healthcare professionals to hash out the truth and deception in stories about diabetes.

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Next we heard from Ed Damiano, PhD, who is Associate Professor of Biomedical Engineering at Boston University. He’s part of a large team working in Boston on bionic pancreas technology – known generally as the Artificial Pancreas. After visiting the University of Virginia’s Center for Diabetes Technology last year, I was interested in hearing the perspective of someone else working on the same technology. Let me tell you… it was no less fascinating. It was interesting to see the device they’re working with too. An iPhone (this is nothing new… UVA’s program uses an Android phone), with some cool characteristics. Among them are a bolus feature that doesn’t include a carbohydrate count. It simply asks you to say whether you’re eating a Typical Amount, Less Than a Typical Amount, or A Small Bite. The AP device does the rest. If something like this comes to market, carb counts could be a thing of the past. Is that crazy?

There’s more to this, of course. The team in Boston is still hoping for a better version of microdose glucagon to work in their dual-chamber device (which has already been approved for clinical testing). Tiny doses of insulin and glucagon are administered in the device to keep the patient in an appropriate range. Yes, there’s a lot more here that could probably take up an entire post, so I’m encouraging you to get more information on the work being done. When will something like this be available to all People With Diabetes? Right now, we’re looking at around 2017. And since that’s four years away, the timeline may still move a bit. But the progress so far is very encouraging.

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Got a chance to sit in a great discussion with Kerri Sparling and Scott Johnson that delved into Diabetes Devices in the Real World. People talked about everything from social media to carrying cases for your diabetes supplies to how you carry and show (or don’t show) your diabetes devices in public. It was a lively talk involving a variety of PWDs and parents who had lots of questions, but also lots of super information to share. People were creating Twitter accounts on the spot and showing off their D-bags. I loved watching faces light up when they started to understand something that they didn’t quite understand before, or found sources of information that they weren’t aware of prior to this get-together.

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Sunday morning’s closing keynote spoke volumes to myself and to Maureen. Sebastien Sasseville is the first Canadian with diabetes to summit Mount Everest. Not enough for you? Last year, he completed the self-supported Sahara Race in Africa, through the world’s largest non-polar desert, running 250km over seven days. He talked about both of these events and gave us some important insights. Most meaningful to me was when he talked about doing the Everest expedition. Over two months, their team had to start at base camp, then climb up to various camps before climbing back down again. They had to do this several times before making an attempt at the summit. The point was to acclimate the team to climbing at that altitude (can you really get acclimated to something like that?). The point is that while we have this constant “perfect diabetes management” goal in our minds, sometimes our path to that goal is filled with ups and downs that help us get used to what we need to make it all the way toward our ultimate goal. And what if we reach that goal: that perfect A1c, or perfect pregnancy with diabetes. What happens then? Sometimes, our goals change. Sometimes the bar gets moved. Both up and down. And that’s okay. And fear about the journey should not keep us from going after our goals.

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It was an interesting 36 hours or so. Soaking up a lot of information and hearing from people living the lives that we’re all living. Sometimes inspiring, sometimes life-affirming, sometimes funny. I’m lucky this was close enough that I could attend.

In part Two, I’ll try to cover my experiences outside of the scheduled sessions.
 
 
 

By StephenS | Posted in Artificial Pancreas, Diabetes | Also tagged , , | Comments (2)

January DSMA Blog Carnival… New Year with Diabetes.

January 29, 2013 – 10:44 am

Ohmygosh! It’s almost the end of January, and I haven’t completed my post for the January DSMA Blog Carnival. If you’re writing about your diabetes too, you should participate. Just write a post on the subject and link to it on the DSMA Blog Carnival page.

This month’s blog carnival topic asks us to fill in the blank:

New Year with Diabetes : Striving for _______ in 2013

To be honest, I could have taken the easy way out and used my January 2 post this month. But that post really talked about my life overall, and what I would like to accomplish this year to be a more well rounded person. Since we’ve still got a few days left in January, I’d like to narrow down my focus to just diabetes here.

I think what I’m striving for in 2013 is a continuation of what I started in 2012. I want to get out there and get engaged with the rest of the world. A few times in the past year people have asked me about my story… you know, the “tell us all about your diabetes” story. Each time, I found myself describing this sequence of events where I was diagnosed, went off to live my life, and kind of lived in the woods with my diabetes, so to speak. Not doing anything to help anyone, not learning anything new, not knowing much beyond what I knew on the day of diagnosis. But since last year, I’ve been trying to change all that.

I want to find my way out of the woods and into a place where I can get some clear footing with my condition. I want to learn about new therapies, new ideas. Converse with others going through the same issues and share valuable information, because together we are worth more than the sum of our parts.

In 2013, I’ll be striving to get my diabetes out into the sunshine, and I’ll be trying to help others do the same. I hear it’s warm out there.
 
 
This post is my January entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at
http://diabetessocmed.com/2013/january-dsma-blog-carnival-2/
 
 
 

By StephenS | Posted in DSMA Blog Carnival | Also tagged , , , | Comments (2)

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.
 
 
 

By StephenS | Posted in Social Media | Also tagged , , | Comments (6)

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
 
 
 

By StephenS | Posted in Social Media | Also tagged , , , , | Comments (3)

October DSMA Blog Carnival. What can diabetes educators/HCP learn from the DOC?

October 19, 2012 – 10:21 am

This month’s DSMA Blog Carnival topic asks the question:

What can diabetes educators/HCP learn from the DOC?

To begin with, they could learn that our lives are more than “How are your sugars today?” and “Have you been exercising?” and “Have you been doing okay with your diet?”. We lead real lives just like everyone else, and the DOC is a prime example of a group of people telling their real-life stories, with diabetes along for the ride.

Reading those stories can give healthcare professionals a reminder of what it’s like to live with a chronic illness every minute of every day. Let’s face it: diabetes educators, endocrinologists, nurses, phlebotomists, and office staff see so many people throughout each day and each career that it becomes easy to tune out everything that isn’t an A1c, or blood pressure, eye/foot exam, or any other clinical element. Getting a look at someone’s life via a blog or podcast can help them reintroduce the human element into their patient’s numbers.

Also, from this patient’s experience, I know that healthcare professionals can find out about the latest medical gadgetry from PWDs online. About six months ago, I asked my endo about a couple of new things that had recently hit the market. She hadn’t heard of them yet (this is totally understandable—she has many patients, not all of whom have diabetes), so I explained to her what I had read via a couple of DOC sites. A week later, she sent me an e-mail telling me she had read up on what I’d asked about and spoken with a couple of the local sales reps about the products. She also wanted to share my blog with other patients and with another HCP she works with. This wouldn’t have happened without the information being out there, and without my endo and I engaging in both online and offline dialogue.

The DOC isn’t there to get me prescriptions the doctor won’t prescribe, or to turn me on to voodoo cures (air quotes optional). But I do count on the DOC for:

Validation. I will always remember the first time I read about another PWD’s hypo experience, and the feeling I got when I realized I’m not alone on this D planet. Changed my life.

Empowerment. Stories from people just like us helps us decide that yes… we can take on that nasty low and come back strong from it. Yes… we can figure out that meal bolus, factoring in insulin on board + BG + carb count + exercise. Yes… we can have a job, a family, a life. Yes… we can do this.

Support. Just the glasses story from this past July is all I need to mention here. If you haven’t looked at this, click and find out. Enough said.

Guidance. We all have those moments when we’re not sure about the next step. Getting real-time feedback via Twitter, Instagram, Facebook, etc. from those in the know (#makessenseifyouhavediabetes) is incredibly valuable, especially during non-office hours.

Most of all, I want my healthcare professionals to know (read: understand) that the DOC is part of my overall care team. The Diabetes Online Community is not a replacement for my healthcare professionals. But the DOC is just as important.

This post is my October entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/october-dsma-blog-carnival-2/
 
 
 

By StephenS | Posted in DSMA Blog Carnival | Also tagged , , , | Comments (6)