Tag Archives: DOC

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?
 
 
 

By StephenS | Posted in Social Media | Also tagged , , | Comments (2)

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)

Into the Time Machine: 1991

August 7, 2012 – 9:27 pm

Hello Stephen… it’s me, Stephen. 21 years later. Now that some time has passed, I thought it would be cool to send a letter back into the time machine. I hope this note helps you navigate the next couple of decades.

When you were diagnosed, you were told that you would need to give yourself 2 injections per day, every day, for the rest of your life. That must have seemed overwhelming. I remember you did the math in your head right away: twice per day, 365 days a year, equals 730 injections per year! That’s 7304 every decade. Now, this may sound like lame advice, but hear me out. Today, when I start to feel overwhelmed, I try to break things down into small steps. I try to keep the overwhelming from becoming overbearing by doing what I can do now. My point is that diabetes is a one-day-at-a-time disease anyway. And each day builds upon the next to determine how you’re doing in the future. While that may seem daunting, you can still only live this thing one day at a time. So don’t worry about tomorrow or yesterday. Your best chance to live well with diabetes is today. Tomorrow, repeat those last two sentences to yourself. Rinse. Repeat. At some point, sooner than you think, you’ll feel less overwhelmed.

When it comes to diabetes-related supplies, remember: You’re the customer, and the supplies are products. Whenever possible, take things out for a test drive, so to speak. Find out what works best for you. How to start? Seek out answers from others. In person at first. Later on, you’ll discover this Diabetes Online Community thing where you’ll be able to get firsthand accounts from people using all sorts of things you haven’t even heard of yet. Use their(our) expertise to help you make an informed choice.

When a doctor wants you to take a new drug, or do something new, ask them why. If they can’t give you a credible answer, you might want to consider waiting to fill that prescription or start that new program until you find out more. And if you do take their direction, try to find a measurable way to gauge whether you see an improvement. If a new drug or new program doesn’t help you improve your A1c, or your cholesterol, or your blood pressure, don’t be afraid to tell the doctor that you won’t do that anymore. And tell them why. If you take this advice, you might be able to avoid a certain ugly episode with a doctor that sees you as a paycheck rather than a patient. It’s okay for doctors to make lots of money. It’s not okay for them to treat you like crap, then expect to be paid. Trust me, you don’t want to know any more about it than that.

Let’s talk about burnout. I’m not sure how to break this to you, but if you’re feeling diabetes burnout at some point, you’ll be in a select group that includes about 99.5% of all People With Diabetes (PWDs). And the other half percent is lying. In other words, you won’t be alone. If this happens in about 10-15 years or so, you’ll be able to find hundreds of resources online. This will probably be a time when you’ll need less advice and more support. A shoulder to lean on. So use this Diabetes Online Community I mentioned before (the DOC) to seek out that support. They’re very, very good at it. It’s hard having to do this everyday. And it sucks. So when you’re feeling burned out, use this resource to help prop you up. Then do the same for someone else who needs a boost.

I know that in the next 20 years or so, this diabetes thing will make you worry occasionally. You’ll get mad from time to time. You’re going to feel guilty because you can’t find all the answers yet, or because someone else is suffering more than you. There are going to be times when you’ll wonder if you’ll ever figure it out.

Those things come with the territory. But they will make you stronger, even though it won’t feel like it at the time. Let’s talk about those another time. For now, remember: one day at a time; make the best decisions for your care, and don’t be afraid to ask questions; and seek out help when you need it. That’s enough for now. Keep doing your best. And don’t forget to think of others and help them whenever you can. I’ll be in touch… back in the future.
 
 
 

By StephenS | Posted in Into the Time Machine | Also tagged , , | Comments (2)

Like These Links. D Pluribus Unum.

August 3, 2012 – 8:20 am

Let’s look again at the DOC. Or specifically, about bloggers. I’ve seen a few posts about bloggers, and blogging, in the past couple of weeks. I’ve also seen more than a few comments related to blogging and bloggers.

I’ve been trying to resist writing about bloggers and blogging for a while. Mostly because I’ve only been blogging here for about 4 months myself. Not enough experience to really see things clearly. So instead, let me share a few links, and hopefully add a few thoughts of my own.

At My Busted Pancreas, I’m reminded that I too live this T1D life on my own for the most part. The only other type 1 that I know personally lives about 500 miles away, and she’s one of The Great Spousal Unit’s friends anyway. If it weren’t for what I read from the DOC, I’d still feel like I’m alone and no one gets it. And yes, I really mean that.

Kim at KD(and it’s not kraft dinner!) wrote about her advocacy at the grocery store, and how, a year ago, she was the shy one who didn’t want to bring her diabetes out in the open. Likewise, Karen at Bitter-Sweet talks about how she’s evolved from the shy person in high school to an unlikely advocate. I don’t think these things happen without the support and understanding of all of us in this community, do they?

Scott Strange at Strangely Diabetic talks about a lot of things when he describes his blogging and advocacy, including Survivor’s Guilt. Or Proactive Survivorship. Anyway, his story is inspiring, and he lays it out on the line about why he does what he does. It’s a good read.

What if you’re writing all the time, and you start to feel like nobody notices? There are it seems, a few bloggers that everyone reads, everyone sends comments to, everyone tweets. You wonder if you’re really doing something worthwhile. Kate at Kate’s Sweet Success has a great post that gets to the heart of the matter: “…the more voices we hear, the better off we will all be. I don’t have to be a rock star in the DOC in order to make an important contribution. What I have to do is be honest and put my ideas out there in the hopes that someone else will benefit.” Exactly. Let’s remember why we got into this game, okay? I don’t think it was to get the most hits on a particular day. If that is why you’re blogging about your diabetes, well… maybe you should rethink your mission statement. Just saying.

Finally, if you are wondering if you really are making a difference, take this advice from Sara at Moments of Wonderful (and then read all of the great Best of the ‘Betes Blogs posts): “Never doubt whether anyone cares what you have to say. I guarantee that there is someone out there who is waiting for your words. This community cannot exist without each and everyone one of us.”

I can’t put it better than these people have. In a year or two, the DOC might be quite different from what it looks like now, for reasons we may not be aware of yet. For now, I am so happy to share my voice, and I hope to help give someone that one word of encouragement, or note of understanding, or crazy photo on that one day when they need it most. If you know what I mean.

D Pluribus Unum… out of many, one.

Enjoy the weekend!
 
 
 

By StephenS | Posted in Like these links | Also tagged , , | Comments (1)