Category Archives: Social Media

To share or not to share.

August 16, 2013 – 9:31 am

I’ve seen, heard, and read discussions lately regarding how much, if any, personal information we all like to give out online. The questions are many and varied: Do I share personal information? Personal information about family members? What about photographs? Do I want my medical team reading my blog? Or even commenting? What about company representatives from pharmaceutical and medical technology firms?

To share or not to share… That is the question. The answer is really up to you. It’s an individual decision. The right thing to do is what’s right for you. For this post, I’m going to give a little detail about sharing online, and what I share or won’t share online. Let’s take the questions above one or two at a time.
 
 
Do I share personal information? Personal information about family members?

I do share some personal information. I’m 51 years old, I live in Baltimore, I have a wife and a niece who live in the same house with me. When I have stubborn high blood glucose levels, or nasty low BGs, you can read about that too. I’ve shared details of bike rides, recipes, and my participation in a clinical trial.

But I haven’t told you everything about me, and I probably never will. There are limits to what I have chosen to talk about. Those limits have changed over time, as I’ve gotten more comfortable with what I’m letting you know, and less afraid that you know it. It seems sensible to me to be as secretive as possible at the beginning of your online story. You can always give more detail later. But once you let the cat out of the bag, so to speak, you can’t put it back in. For a long time, Maureen was just referred to as The Great Spousal Unit and Rachel was just The Live-In Niece. When I finally used their names in blog posts, I did so because I was comfortable with it… Not because I felt I needed to do so to tell a story. Also, and this is important: When I’ve talked about anyone from my personal life, I have either received permission to use their names and details of our interactions (or they were public figures already), or I have not referred to them at all. That includes my niece and my spouse.
 
 
What about photographs?

If you haven’t already, do this right now: Turn off the geotagging on your photo device. Now.

Geotagging is a way that digital photos can store, in laymen’s terms, GPS-type (metadata) information on where the photograph was taken. If the geotagging feature on your digital photo device is on, and you take a photo of your child at the pool rocking their OmniPod, and you upload it to Twitter, Facebook, Instagram, etc., people with the skills to find the geotagging can find exactly where that photo was taken. Most digital photo devices, including iPhones and iPads (sorry, I don’t know about Android or Samsung) come with the geotagging feature on as a default setting.

I love to take photos, and I love to post them online. But the geotagging is off on my pocket camera. I can’t imagine a single reason (unless I’m lost in the wilderness with cell service—and I don’t have a smart phone), why I would want to tell everyone, including potential thieves, stalkers, etc. where I am and what I’m doing. Okay, I probably won’t ever have to worry about stalkers. But you get my point, right? I don’t want to scare you. The photos are great. But don’t share the latitude and longitude of your location in the process. Want to know more? A simple Google search on “geotagging” will provide explanations, examples of geotagging used for sinister purposes, and tips on how to disable the geotagging on your device.
 
 
Do I want my medical team reading my blog? Or even commenting?

When I read my first Diabetes blog (for the record, it was textingmypancreas.com), I was overwhelmed that someone else existed who had the same experiences I had. Then almost immediately, I got jazzed up about starting my own D-blog.

Then reality set in. I’ve written before. Mostly for broadcast (news, and a lot of radio commercials), and the occasional internal company e-mail or web page. Almost always, people have wanted to edit what I write, sometimes even to the point of insisting on grammatical or spelling errors in the process (“change ‘their’ to ‘there’, and capitalize the T” is my favorite example). These people were paying me, so they had the right to ask for changes that suited them, though I draw the line at mistakes like the one above. At any rate, I really started to get uncomfortable with the idea of putting something out there again and having it whacked by readers, or worse, my employers (whom I generally do not write for). As a result, I waited for many months while I mulled over whether to go online with my story. Of course, I finally did decide to start a D-blog, and I did so by getting comfortable with a couple of notions.

One: This is my space. If you don’t like what I write, you have the right to read something else, or start your own blog. I’m not above making mistakes, and I hope that when I do, I am contrite and not bitter about reversing my viewpoint or my wording. But I’m not going to add an apostrophe to every word that end’s with an S (mistake intended, in case you’re wondering).

Two: If I’m posting something on the internet, I need to understand, and be comfortable with, the fact that anyone can read it. And comment on it. Yes, my endocrinologist reads my blog. She doesn’t follow it, she’s never left a comment, and we don’t discuss it at length. But it is often an additional part of our conversation during my appointment. An example:

Dr. P: “I read about your gluten free week. How did you like that?”
Me: “It was great… really gave me an insight into the difficulties Celiacs must face when they’re diagnosed.”
Dr. P: “Are you still eating gluten free?”
Me: “Ummm…. No. But maybe I should? Would I have to adjust my basal rates?”

I did have an instance where I described a not-too-good experience related to my diabetes, and I received an e-mail about it (not from Dr. P). That e-mail made me very uncomfortable. But that feeling soon faded, as soon as I realized that the e-mail was sent out of concern for my welfare, and not meant to scold me. What I’m saying is that the discussion goes both ways. If my story is public, I need to allow for and even encourage feedback. And support anyone’s right to say anything they want about it, as long as it’s not hurting anyone.
 
 
What about company representatives from pharmaceutical and medical technology firms?

See above for my feelings on that. If we post it publicly, anyone can read or comment. But let’s face it: They’re probably out there reading our posts. Not all posts, of course. But many firms equip themselves with software that will find mention of their name or products when it’s used online. That includes Twitter. So if you’re posting a review of a new meter or CGM or insulin, and you use the company or product name, they may take a look.

I’ve never received comments directly from company representatives. But I’ve received an e-mail from an author after a book review, and a PR rep from a pharmaceutical firm after posting about their product and research. These e-mails were sent almost certainly because when I wrote about these things, I reached out to the entities themselves to let them know I was posting about their product. I wasn’t going to change what I wrote to make them happy, but I thought a heads-up on a post featuring them would be the decent thing to do.
 
 
Over the last year and a half, I’ve shared a lot about my life and what I’m up to at a given time. I’ve done it here, certainly, but I’ve also shared a lot via Twitter and Facebook. I’ve done so at an increasing, yet careful level of detail about who I am, who I interact with, and how I interact. I can’t really give advice on what you should do regarding privacy… I’m not qualified. But if I did give advice (you knew I was going there, right?), I would say: Be safe, think things through as much as possible, and try to be fair. Ask questions, get advice if you’re not sure. Try to take a long-term view of things. Will my post still be worthwhile ten years from now? And don’t be afraid. The rules of online interaction are being written while we speak. And they will be rewritten again. Don’t be afraid of the rules, but be aware of them. Your story is worth telling, no matter how you tell it.
 
 
 

By StephenS | Tagged , , , , , , | Comments (2)

About that #DSMA Philadelphia meetup.

August 13, 2013 – 9:51 am

DSMA Philly

Since I’m back from vacation, and I finally have wi-fi access for the first time in almost a week, I should probably talk about the DSMA Live and DSMA Twitter chat that happened last Wednesday night in Philadelphia. I have never been in a room with even half as many adults with diabetes as I was that night. It was a pretty incredible experience.

At some point, I guess I’ll probably get used to being in rooms with other adults with diabetes. I haven’t gotten to that point yet. It’s weird because I’m almost never in a room with other PWDs. When I am, it’s wonderful because it’s empowering and uplifting and informative all at the same time. So it’s weird and wonderful.

That kind of environment is a by-product of what Cherise Shockley and Scott Johnson bring to the table with their efforts to bring people together and share how important it is to engage in discussions with others like ourselves. It’s the kind of quality that’s not easily defined, but is special and necessary at events like this. Sort of a “you know it when you see it” kind of thing.

I got a chance to meet a few people I hadn’t met before, and a few that I had met before. It was very nice seeing Molly McElwee Malloy, research coordinator at University of Virginia’s Center for Diabetes Technology. She’s also a Certified Diabetes Educator and an RN. She’s a Type 1 too, so it’s interesting to talk to someone who knows so much and lives with diabetes like I do. She made some great points during the podcast. I loved hearing Allison Nimlos talk about the Paleo diet, and I got a couple of great ideas for starter books. I’m not thinking of going totally Paleo, but I’d like to try it out, at least, because it really does appeal to me. And most diets don’t. Kelly Kunik was very kind and gracious, and we talked briefly about her talented niece, who is doing great. I didn’t get a chance to tell her that my nephew has done fantastic since living with us for a couple of years, and our niece is growing every day since moving in with us two years ago. I got to meet Colleen Gray, who is very nice and seems to have a great sense of humor. There was also Maria Qadri and Penny too, both of whom are great to follow on Twitter because they’re very witty and smart. And I got to meet Brea, a Best of the ‘Betes Blogs winner from last month who has a great story to tell, and tells it greatly.

You know, I didn’t think I had met too many people Wednesday until I read what I just wrote. But it appears that I did. It’s always great to put a face with a name, or vice versa. Mostly, it was great hearing the diversity of voices in the room.

How was it being in the room while DSMA Live and the Twitter chat were occurring at the same time? Honestly, it was a little hard to concentrate on one without losing track of the other. But after a while, I was able to handle it, I think. And honestly, I wouldn’t have missed it for the world. I vote for Cherise and Scott to do this every week in front of hundreds or thousands. How cool would that be?

I’m so grateful to Diabetes Community Advocacy Foundation and Roche for hosting this special happening close enough that I could attend. This also brought home to me the idea that I really need to find a way to do a live meetup of my own locally. Don’t know if I can pull it off yet, but this event definitely put it at the forefront of my mind again. And I have to admit: Even though it will be just a virtual meetup, I’m looking forward to this Wednesday too.
 
 
P.S. If you missed the original podcast, you can listen to it now by going to blogtalkradio.com and searching for DSMA Live, or by clicking here:
http://www.blogtalkradio.com/diabetessocmed/2013/08/08/dsma-live-in-philly
 
 
 

By StephenS | Also posted in Events | Tagged , , , | Comments (7)

Yay Vacation! On to Philly for #DSMA, then Ohio.

August 7, 2013 – 10:51 am

I’m on vacation! It has been a long time since I’ve taken consecutive days off, and I’m starting six days off that will take myself and The Great Spousal Unit first to Philadelphia, then to Cincinnati, where my father-in-law turns 80 this weekend.

First, I’m going to Philadelphia to see the #DSMA Live and #DSMA Twitter Chat happening Wednesday night. I’m hoping I can connect and re-connect with people I admire, some of whom I haven’t met yet. And I’m excited to see the DSMA Live podcast happening at the same time of the Twitter chat (this is a first for DCAF). If you’re in person, everything starts at 8:00 p.m. EDT. If you’re tuning in to the podcast and/or participating in the Twitterage, everything starts at 9:00 p.m. EDT.

If you’re not able to be there, you can listen in on the podcast by clicking here.

If you’re interested in participating in the Twitter chat (and who isn’t?), this is a good place to go for participation and to keep up on the fastest hour of the week.

Oh… and did you know that Diabetes Community Advocacy Foundation has a new website? It looks fantastic, and you should check it out! Instead of looking for Diabetes Social Media Advocacy, go to http://diabetescaf.org

dsma-social-meetup

Looking forward to connecting with you, either in person, via the podcast, or by Twitter Wednesday night. And I hope the rest of your week is super too.
 
 
 

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Mari Ruddy has been found.

June 13, 2013 – 9:27 pm

UPDATE: From findmariruddy.com:

Mari’s family have just given us the following update, as of 6 PM Thursday 6/13:

“Mari is currently in stable condition and in the ICU. We thank you again for all your efforts, support, and continued prayers. We will continue to share updates as we can.”

Mari was found unconscious but alive this afternoon. Her family requests privacy until more information can be shared, and thanks everyone for their efforts.

A lot of prayers were answered today. Thanks #DOC
 
 
 

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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 | Tagged , , , | Comments (1)