Tag Archives: social media

The Patient/Corporate Paradigm.

April 5, 2013 – 2:05 pm

I read an interesting article in the New York Times on my flight back to Baltimore yesterday:

An MS Drug Takes a Feisty Approach Aimed at Younger Patients

The article talks about the new oral drug to treat Multiple Sclerosis made by Novartis. Or specifically, their advertising for the drug, which features actual patients! Including some who use social media. From the article, quoting Dagmar Rosa-Bjorkeson, head of Novartis’s multiple sclerosis unit.:

The campaign’s upbeat tone comes, Ms. Rosa-Bjorkeson said, from sentiments patients expressed on blogs and other forms of social media where “people were saying that ‘this disease is not going to stop me.’ ”

“Those were spirited words, with an edginess and power to them that wound up giving the campaign a bolder tone,” she said.

Okay, I’m letting that sink in for a minute…

Now, from another part of the article:

Featuring real patients “is a contemporary way to get patients to recognize their symptoms and to be more in control,” said Jeff Rothstein, a partner at Cult Health, a Cult360 ad agency. “But pharma ads have to tread a fine line so they are not seen as promoting the idea that patients should just ask the doctor to write a prescription for the drug.”

These two snippets really have me thinking about something, and I want you to think about it too if you’re out there blogging or tweeting or instagraming (is that a word?) or anything else in social media about your diabetes.

If you were asked to participate in a campaign like this, would you? Don’t forget, this is a drug and not new technology we’re talking about here. What about new technology? Would you say yes to helping to promote technology and no to helping to promote a new drug? Vice versa?

What about this: what if you were asked to participate in corporate advertising and you said no. Would you worry that companies might want to back away from engaging with patients as a result? If you did worry about that, might the idea of that change your mind?

Even though I’ve only been doing this for (almost) a year, I’m increasingly aware that we all walk a fine line when it comes to these kinds of issues (by the way, I’ve never been approached about anything like this). A finer line, perhaps, than I had considered before. And you can bet that the line will get finer and finer as the years go on.

I’m not making a judgment. I have an opinion, but I don’t want to give it here right now because I want you to think about it yourself. Think about what it might be like to participate in advertising like this, or decline to participate. Then think about the implications. Then think about the good, and possibly bad things that can happen as a result of your decision.

What would you do? How would you handle these kinds of questions? However you feel, don’t keep it to yourself. It is important to share your views. If you’re so inclined, please do so below or post something about it on your space in the social media landscape. Then come back and leave a link to it or tell me about it. I’d love to read your opinion.
 
 
 

By StephenS | Posted in Social Media | Also tagged , , | Comments (1)

Things to consider this weekend.

March 8, 2013 – 11:09 am

Just finished up a great visit with my endocrinologist this morning. More about that next week. In the meantime, in case you didn’t hear about these, here are a few things for you to mull over this weekend:

I’m headed to Bethesda, Maryland (okay, North Bethesda, Maryland) on Saturday for the 2013 JDRF Type 1 Diabetes Summit. Lots of Artificial Pancreas and Islet Cell talk, and a chance to commune with other Type 1ers. I’ll try to write about what I find out next week. If you see me there, I hope you’ll stop me and say hello. It would be my pleasure to meet you. More information about the summit is available at http://www.jdrfsummit.org.
 
 
The Medicine X Conference is scheduled to take place on the campus of Stanford University September 27, 28, and 29. Courtesy of Christopher Snider, notice that MedX is taking submissions for ePatient scholarships to attend the conference. Find out about it at http://medicinex.stanford.edu/medicine-x-alliance-health-epatient-scholarship-program-2013/.

Man, that’s a long web address.
 
 
Finally, I found this little tidbit in my inbox from the U.S. Food and Drug Administration:

FDA wants you to be a part of a new working group “that is geographically diverse and consists of experts and interested persons from all stakeholders in the HIT (Health Information Technology) community to help develop the required strategy and recommendations.”

If you would like to nominate someone or even yourself to serve on this new working group, please visit http://onc-faca.altaruminstitute.net/apply and complete the application by March 8th, 2013.

That’s today, folks. Hurry. And enjoy your weekend!
 
 
 

By StephenS | Posted in Diabetes | Also tagged , , | Comments (1)

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)

February DSMA Blog Carnival. Feel the love.

February 12, 2013 – 1:57 pm

February’s DSMA Blog Carnival invites us to feel the love… for our readers, commenters, and even our lurkers.

Write a Valentine to your readers, commenters, and lurkers!

How do I love thee? Let me count the ways…

Dear readers, you give me a reason to keep writing. Besides my own ego, of course. By visiting my site, you help me to remember that I’m not just writing to get things out of my head and onto the information superhighway. I’m also writing to inform, to make you think, to make you laugh. I hope to continue doing so for some time.

Dear, dear commenters, you make me feel so special with your words of encouragement and support. I’ve also learned a thing or two by reading your comments. Please, please keep leaving your thoughts for me to read. This goes for you Twitterites too. Just the thought of your messages always makes me smile.

And my dear, dear, dear lurkers… please don’t feel ashamed by the creepiness of your title. I enjoy and welcome your cookies to my site. It’s so great to know that there are secret admirers of Happy-Medium.net. Know that I hold you close in my heart always. And please… if the spirit moves you, consider moving over into the commenter category.

Thank you so much for being a part of my online world, you crazy readers, commenters, and lurkers.

Your kindness and generosity is unequaled, and my appreciation for you knows no bounds.

This post is my February 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/february-dsma-blog-carnival-2/
 
 
 

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

#CWDTech 2013 Part Two.

February 7, 2013 – 9:45 am

This past weekend’s Children with Diabetes Focus on Technology conference in Washington, D.C. gave me a lot of insight on gathering information, staying motivated, and living a better life with diabetes.

Not all of that information came from the scheduled sessions.

Standing: Myself, Jill Weissberg-Benchell, Ph.D., C.D.E., Kerri Sparling, Karen Graffeo, Shannon Marengo. Seated: Christopher Angell and Scott Johnson

Standing: Myself, Jill Weissberg-Benchell, Ph.D., C.D.E., Kerri Sparling, Karen Graffeo, Shannon Marengo. Seated: Christopher Angell and Scott Johnson

I’m always a little wary of meeting someone in person that I’ve only seen, heard, or read about in another forum. Sometimes that’s because those kinds of meetings haven’t always gone well for me. But mostly, it’s because I’m really and truly worried about annoying someone, taking up their time with only my questions when a hundred others would like to do the same, and giving them the uncomfortable feeling that I’m immediately their best friend when really, they hardly know me.

Does that sound like I’m over-thinking it? Yeah, I know. I also know that I’m better at building relationships from the ground up, starting them at a place where the other person is most comfortable. I never want to assume anything about anyone. So when we went to sign in at the conference on Friday night, I didn’t turn around right away when I heard someone behind me calling my name. It was Karen of Bitter-Sweet Diabetes and Diabetes Blog Week. I got a big hug from her and Scott Johnson. Maureen didn’t show it, but she was shocked. At me. She probably thought I would pass out or something. My own family doesn’t hug like that, and she knows it’s out of the norm for me. Later she told me that after that, she wasn’t worried about me the rest of the weekend.

But let me back up a minute. This is about the conference after all, and I think it’s important to note (again) that a lot of support and information-sharing goes on in between all of the items on the official agenda.

First, let’s cover the exhibit space. This is where all of the vendors are set up peddling wares like the Animas pump, VerioIQ and iBGStar meters, Orbit infusion sets, and Glucolift glucose tabs. ADA and JDRF (hello Delia Whitfield) each had a table too, though, as you might expect, they were on opposite ends of the exhibit space.

Why is the exhibit hall a big deal? Oh, I so wish that I had attended a conference like this when I was thinking about starting on an insulin pump. It would have given me a chance to see products in person, hold them in my hands, and most of all, ask questions of the company pushing the device. Don’t know if it would have changed my mind. But I would’ve liked more information, even if I didn’t know all of the questions to ask at the time.

The attendees at the conference are there in the meeting rooms, exhibit space, and throughout the hotel for the duration of the conference. Getting just one tip on managing BGs, or getting the support and perspective of someone who’s gone through what you’re going through is worth the price of admission. And helping someone answer a question, or giving that support and perspective from your point of view really feels great.

The CWD staff and faculty appear to be very hands-on, helping to answer questions and also listening to concerns or suggestions. They’re very approachable, which is super. I love that I didn’t see a tie on anyone all weekend. And I’m a little jealous, ‘cause I don’t get to dress like that for my job. I also liked the buffet, with its nutritional information in front of every item, right down to the gluten free bread (yes, I’m still eating it – go figure).

So back to the individuals I met over the weekend that I have seen, heard, or read about before. Here’s a list, and I hope I didn’t leave anyone out:
Karen, Scott, Kerri, Shannon, Christopher Angell, Dayle and Chris. Also Tom Karlya, Ed Damiano, Harold Sanco, and Sebastien Sasseville.

I’ve seen a lot of posts over the last year and a half or so talking about meeting people in real life, and how great it was, and how special it is to be in the presence of such lovely people, all of whom “get it”.

What I really liked was how normal it was. I mean, it was cool that everyone did their testing and bolusing right out in the open, and that questions were asked and answered with candor and thoughtfulness. What I didn’t expect was how normal that felt. I can’t ever remember feeling like that when talking about my diabetes. I wouldn’t wish for this at all, but there was a point where it almost felt like most of the world has diabetes, and a select few were left with working pancreases. Weird, huh? I admit that I wasn’t expecting to feel that sense of… not having to be on stage with my diabetes all the time. That’s a pretty relaxing place to be. Thanks to everyone for making me feel normal.

So that’s my take. And that’s why I would recommend attending this conference in the future, or the Friends for Life conference in Orlando in July. Or one of the other conferences in the USA, Canada, or the UK. I wouldn’t have said this even six months ago. But I’m saying it now. Go and connect. Learn something. Find your normal.
 
 
 

By StephenS | Posted in Diabetes | Also tagged , , | Comments (8)