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June 22, 2012

HCPs, Patients, & the Web: An Interview with Dr. Berci Mesko.

Dr. Berci Mesko.  That guy.  You know him.Berci and I 'met' online seven years ago, I think (which equals out to about four hundred in Internet years), and had the opportunity to toast in person a while back.  I've been following his progression in medicine through social media, and I'm proud to be chatting with him here on SUM today, looking forward to what's next for this socmed trailblazer.

Kerri:  You've been a strong voice for social media being part of the health care system.  What initially ignited your passion in this space?

Berci:  My answer is quite simple. I have been a geek for a long time and when I had to face the old structures of medical communication and education, I was surprised I couldn't use my well-designed online methods to solve my challenges in medicine and healthcare. So I started working on new solutions that could be implemented into healthcare. I first became active in the medical segments of Wikipedia, became and administrator there, then I found out a blog could be the best platform for my online presence so I launched Scienceroll.com. Later when I tried to find quality social media resources focusing on my fields of interests such as genetics or cardiology, I realized how desperately we need a service that curates medical social media channels for free, this is why I launched Webicina.com.

As you see, I had very clear reasons to become more and more active and to find my own solutions as a geek.

Kerri:  Why do you think it's important for health care providers to be involved in the social media space?


Berci:  It might be a surprise, but I don't think all of them have to be involved. There are a lot of patients who do not use the internet in their health management and do not require their doctors to communicate online. But as the number of e-patients is rising rapidly and as the amount of information we have to deal with is growing day by day, social media can offer great solutions for simple problems such as being up-to-date or communicating with peers.

Basically, using social media is the same as having a real life conversation only with a few exceptions therefore I think the same rules should apply for social media as for offline communication even in medicine. Be respectful, listen closely, be consistent when publishing online and always think twice as whatever content you publish online as a medical student or professional will hunt you down.

Otherwise, social media can be a huge help for physicians by using online platforms, crowdsourcing and other extremely useful features if they know exactly what they want to achieve and know the rules and limitations.

Kerri:  Where is medicine going, in a social media sense, and how can patients be more actively involved, in your opinion?

Berci:  The only thing we don't have to deal with right now is the way patients use social media. Their motivation is clear: they have a medical condition and need information. The easiest way nowadays to get information is to turn to the internet. There is no question, they will use it more and more frequently in the upcoming years.

On the other hand, this is the job and responsibility of medical professionals to become their guides when it comes to the assessment of quality information online. Physicians should be able to meet the expectations of e-patients. As Farris Timimi, MD of Mayo Clinic Center for Social Media said, this is now part of their job. Medical professionals are natural communicators and now social media is a a huge platform used for that purpose and they have to know the tricks and potential dangers. The only way to do this properly is including digital literacy in medical curriculum just like I did when launching the world's first university course focusing on social media and medicine for medical students and also when I launched the global format of this course so then every medical student in the world can get this kind of knowledge even if they don't have such a course at their medical school.

Kerri:  How does Webicina help bridge the gap between health care professionals, patients, and the web?

The mission of Webicina is to curate the medical social media resources in many platforms, from many perspectives and in many languages. Coming up with the most relevant social media channels focusing on a medical condition or specialty is extremely difficult. The process of curation consists of 3 steps: 1) crowdsourcing through our social media channels that have been built for over 5 years, 2) the Webicina Team designing a collection based on the results of the crowdsourcing, and 3) checking each resource again and providing the reasons why it was selected.

Through PeRSSonalized Medicine, our users can follow the latest updates of any social media channels dedicated to medical conditions and specialties in the simplest, customizable, multi-lingual social aggregator in which if you click on the e.g. German flag, not only the platform will be in German language, but the resources included in the database will be the best German ones. We work with international collaborators to ensure the amazing quality of these collections.

We also provided an award-winner iPhone and Android medical app with a special health 2.0 quiz. Of course, everything is for free on the site.

Then we managed to crowdsource an open access social media guide for medical professionals and pharma.

We try to help e-patients and medical professionals use social media efficiently in as many ways as possible.

Kerri:  And to cap this off on a less structured note, what are the top three social platforms you're fiddling with these days?

Berci:  I would say I'm using Google+ these days quite frequently, but regarding other new platforms, I'm not really convinced those would help me do my job better so even if I gave a try to Pinterest and others, I keep on using those communities I've been building for years to filter the information for me every day (Google+, Facebook, Twitter and Friendfeed).

*   *   *

By way of disclosure, I am on the Webicina Advisory Board.  I have no clue how to function on Pinterest.  And also, I've got legs.

October 27, 2010

The Big, Bad Wolf.

Yesterday, I was up in Boston proper for a meeting of health activists from the WEGO Health community, brought together as part of a panel of patients who were willing to share their perspectives with Pharma.  My fellow panelists - Alicia Staley, Rosalind Jaffe, and the diabetes community's own Karen of Bitter-Sweet Diabetes - and I talked with a group of representatives from Pharma who had questions about getting involved in the social media space.  (Did you know Pharma wants "in" on the social media space?  Can you tell?)

The WEGO Health Socialpalooza panelists and moderators
Kerri Sparling, Rosalind Jaffe, Jack Barrette, Karen, Alicia Staley, and Bob Brooks. 
(This is the happy photo. And because they all humor me, here's the serious one and the goofy one.)

The discussions were extensive, and we talked openly about what we, as patients, thought Pharma was doing "right" and then our opinions on what was missing from the social equation.  The WEGO Health moderators provided a few questions to the panelists prior to the panel, and my answers were sent off a few days earlier, while BSparl was taking a nap. (Which means I was too exhausted to craft up fancy answers and instead blurted out knee-jerk responses, which were included verbatim in the slides.  Which makes me reconsider using the "draft" option of my email to preserve mine and everyone else's sanity.) 

Here are the questions we were sent, and my answers:

What rules of the road should companies follow when they engage your communities online?

  • Always be authentic (aka don't be a big, fat liar)
  • Do not judge the actions of online communities (see also:  "Diabetes Police*")
  • Contribute to the conversation, don't just try to sell us stuff
  • Don't fear the blogosphere:  Show us your face!

What health or pharma company social media efforts are resonating with your community online? [I don't speak for "the community," so I instead listed efforts that resonated for me, personally.]

What would you tell companies to encourage them to support your communities online?

You need us.  In so many ways.  So come talk to us.  We want to hear from you.  Also, bring cookies (And with this slide, the WEGO crew had included a photo of some lovely chocolate chip cookies.  I appreciate being humored.  I also love cookies.)

Pharma isn't the big, bad wolf.  The industry as a whole gets a bad rap because there are some dodgy apples in the bunch that ruin Pharma's overall image.  I think that same principle applies to just about everything (there are always jerkfaces in certain groups).  I think that Pharma companies attending events in effort to engage with patients is a good thing. 

"But they only want to profit off our disease.  They want to tap us because they make money off us." 

Good point.  But while that is true on some levels, it's also true that just having them in the room with us is a start.  Because if they're in the room, they can hear us. And if they hear us, they just may start to listen.  

And damnit, there is a chance of cookies.

*  I hate being policed, especially by people who don't know me.  I can take criticism well, and constructively, but I do realize there is a certain risk that comes with putting my personal health information out there for all to see and analyze.  That kind of disclosure opens me up to a lot of scrutiny and judgment.  Part of what I wanted to convey to the attendees of this discussion was that judging people within these communities is a crap idea.  Unless they know what it's like to live with these illnesses, don't just pop in and make disease management suggestions or judgments.  And definitely don't jump in and try to link to your products.  Support and accurate information go a very long way in making a difference in our health and lives.  Don't rag on the diabetic who clamors for cookies.  ;)

October 18, 2010

Social Networks: Compatible or Competitive?

I was in Las Vegas, but it wasn't all just spending quality time with blogging buddies.  There was work to do - we were there for the Social Health track (sponsored by Johnson & Johnson, MedPage Today, Alliance Health, Campaign for Nursing, and WEGO Health) to help inform others about the discussions taking place in the medical blogosphere, and the power of these communities. 

The panel that I was participating on was Social Networks & The Medical Blogosphere:  Compatible or Competitive, with fellow panelists Kevin Pho and Bryan Vartabedian, moderated by the fabulous Kim McAllister.  The big question was "Are these social networking technologies helping or hurting the blogosphere?" 

The BlogWorld Panel - Kerri Sparling, Kevin Pho, and Bryan Vartabedian
Our BlogWorld panel:  Kerri Sparling, Kevin Pho, and Bryan Vartabedian

We, as a panel, gave this a lot of thought as we prepared for our discussion, and we ultimately settled on the answer of "Well … both." 

Blogging was the first online venture I participated in.  Back in 2005, I started my blog to help me connect with and participate in inspiring a community of other people with diabetes.  At first, I started posting several times a month, then once a week or so, until I realized that I've been posting every weekday for the last three years.  The posts are written by me, for the most part, and the comments are from the readers I have been blessed enough to have over the years.

So I blogged for a few years, but then there was this whole crop of different social networking tools that came on the scene with prevalence and relevance, with Facebook and Twitter leading the pack.  Our panel was trying to figure out whether or not these new tools were helping move the blogosphere forward or assisting in clipping its wings.

For me, the blog is my online home.  It's public-facing, open to any reader (whether they comment or not - I love the lurkers), and it's where I write daily about my life with diabetes.  While I do have a Facebook page (two, actually - one for my family only and then one for everyone else) and an active Twitter account, I would delete both of those profiles if it came down to choosing between them and my blog.  I like having "home base."  It makes me feel safe.

But my blog is almost always a once-a-day post, with comment moderation and responses.  I don't have a running, real-time discussion on my blog, like I do on networks like Twitter and Facebook.  (Maybe because "social networks" have mobile apps?  Is it true that online adventures are going more mobile, and anything that's not easily accessible from a mobile device will be left behind?) 

One of the questions was about whether or not participating in social networks impedes content creation and participation on your blog.  While I do agree that lots of comments take place on Twitter and Facebook, instead of in the formal comments section of my site, I don't think this detracts from my site.  Actually, I think it helps extend its reach, in a controlled way.  Links are reTweeted all over the place and Facebook friends often leave comments on the Six Until Me page, so the discussion is taking place in a lot more venues, giving the chance for diabetes-related commentary to reach outside the confines of our little (but powerful!) blogosphere.

Sites like Twitter and Facebook help to drive traffic back to blog content.  Also, Facebook helps provide a more "shielded" area for health care discussions.  Twitter helps flesh out the patient personality behind the blog, giving real-time access to disease management strategies.  Twitter and Facebook also offer a place to share links that might not inspire a full blog post (or ones that don't have any diabetes relevance at all). Posting pictures and thoughts that I'd prefer to have either in short-form or "behind the wall."  Each different posting venue (i.e. blogging, Tweeting, or Facebook) has its own set of pros and cons.  But, without a doubt, all three can be time-consuming.

But there can be waaaaay too much naval-gazing on fast-paced sites - Twitter in particular - ("I just ate a croissant and am now covered in flaky bits.")  and it can be challenging to make a discussion point within the 140 character limit.  Also, applications like Foursquare can be very dangerous if people are givingThe battle of what tool will conquer the medical online community! too much information about their regular day's business.  Sharing information like that opens Tweeters up to stalking issues. 

What's the future?  I think blogs will remain in the mix, and a big part of the discussion. If a blogger can retain their editorial integrity and keep their online presence consistent, blogging and social media can and will go hand-in-hand.  I believe that people will phase out of the "Oooh, how many 'likes' do I have today?" and will move away from the popularity contest aspect of social media.  Instead, good content will rise to the top.  As it always does, regardless of the newest and shiniest tool.

Do you think Facebook and Twitter are going to kill the blogosphere? (Is a "blog" become like a rotary phone?) Or will dedicated bloggers stand the test of time and new technology?  

July 06, 2010

Finding Your Voice Online.

Last Wednesday morning, Amy from DiabetesMine and I co-lead a focus group at the Friends for Life conference called "Finding Your Voice Online."  The group consisted of a bunch of d-moms, d-dads, and some kids with diabetes who sat in on the session, not to mention some terrific diabetes bloggers (Heidi, Scott, Chris, and Bernard).  And then there was Amy.  And me.  (And my enormous iced coffee - so necessary.  Apologies to everyone who realized I was way over-caffeinated by the end of the presentation.)

Amy opened with an introduction to her blog and her work in the diabetes community, and I finished with my story of how I ended up immersed in the blogosphere.  (Slides below.)  We shared how we 'got started' with blogging, and what kind of opportunities have come as a result of our efforts.


I've spoken at different conferences before, but the Children With Diabetes conference is different.  Its core audience isn't someone with a Pharma agenda or something to sell - the people who go to the Friends for Life conference are people with diabetes, and the people that love them.  They're the people who are affected every day by diabetes, and if this conference had existed when I was growing up, I would have had a completely different perspective on my diabetes.  The FFL audience cares not only about new research developments, but about the real life of a person with diabetes.  Their kids are more than their disease, and I hope they found some comfort in seeing two adults who were more than their diabetes, too.

As I clicked through my personal slides, I talked about my life and my marriage and my stupid cat.  And then I shared with them what I was most proud of:  my daughter.  "When I was first diagnosed, back in 1986, my doctors told us that my having children would be near impossible.  But I am so proud to say that I proved that you can have a healthy baby, even if you have diabetes."  And her little face, grinning out from the slidedeck, proved to me once again why people with diabetes need more exposure to others living with diabetes.  It feels so empowering to know that you can do anything - have a child, drive a race car, fall in love, climb up Everest! - even if you are living with diabetes.

Bloggers at Friends for Life
Bernard, Amy, Kerri, and Scotty J!!

The parents in the audience had a lot of questions, and many concerns were about online privacy.  We talked about the decision to share or not share our child's name or photo with the online community.  "For me, I decided that a few photos here and there were fine, but I wasn't comfortable subjecting my kid's name to Google just yet.  I want her to make that decision for herself.  But I'm like any other parent, and it's hard not to share my little kid with everyone!"  

One parent talked about her decision to make a JDRF walk fundraiser video, and how she had mixed feelings about the level of exposure.  

"I think that we're all safe in this diabetes community, but I need to remember that there aren't just people with diabetes who are reading my blog."  I said.  "Sure, the patient and medical community might be reading our posts and watching our videos, but there are also some completely random people who might be logging on.  And while we're safe within the 'borders' of the diabetes blogosphere, the Internet as a whole isn't quite as safe."  

Some parents had questions about starting their own blogs and getting involved with the diabetes blogosphere.  Others had questions about how to raise the awareness of their existing online properties.  Amy and I walked them through different resources for developing their online voice.  

I have always been a huge supporter of the Children With Diabetes efforts, in particular the Friends for Life conference, and having the chance to speak at a focus group was more than an honor  - it was like coming home.  Thanks to Jeff and Laura for hosting us, and thanks to all of the discussion participants! 

July 02, 2010

Reaching the Summit.

On Monday afternoon, BSparl, Chris, and I boarded a plane bound for Orlando, Florida.  (It was our first trip with the baby - more on that later, because I'm still processing all the stuff required to travel with an infant.)  My trip was dual-purposed:  to attend the Roche Social Media Summit and then co-lead a focus group on Wednesday morning at Friends for Life. 

Like everyone else, I have a disclosure with this:  Roche paid for my plane tickets to and from Florida, and they also covered my hotel room for Monday and Tuesday night.  But they didn't hold me over a shark tank to gain input from me, and I am also still using my brain on my own, so basically they can only claim travel, food during the conference, and lodging.  They also didn't ask us to blog about the event (even though they knew we would).

But like I said last year, Roche is smart because they know by bringing together a pile of bloggers, Roche will be discussed on a pile of blogs.  And also in step with last year, Roche treated us respectfully and worked hard to make sure we were happy, as a group.  But I can't lie:  I was excited to attend this event because it would put me in "real life" touch with my extended diabetes family.  The invitation coming from Roche makes it a "Roche" event, and I can't hide my bias when it comes to being grateful to them for having the opportunity to socialize with my social media friends.  So that's the full disclosure. 

The event took place as a bookend to the CWD "Friends for Life" conference, which seemed to dictate the timing and location.  I think there was a total of thirty-seven bloggers, representing the type 1 community heavily, but with voices from the type 2 and caregiver crew as well, and we were hanging out in a conference ballroom at the Orlando Marriott all day on Tuesday.  

The Roche representatives were very cool to us, and didn't seem to have an agenda of expectations - just an agenda of events.  They had us engaged in discussions about meter accuracy and they also invited in representatives from the American Diabetes Association and the American Association of Diabetes Educators to talk with us.  I felt a little quiet during these discussions (thanks to the utter lack of sleep the night before, with BSparl not adjusting to the travel schedule and deciding to stay up until about 4 am), but I kept an eye on the RocheWANTED! reps during the chats, because I wanted to see what they were reacting to. (That, and there was this long table set up at the back of the room, where a few of the Roche team members sat, watching us.  So I went over to them and let them know I was watching THEM.  Now the student has become the teacher, grasshopper.  /Confucius rant)

Overall, discussions were interesting.  Meter accuracy has been a hot topic for a while now, with the FDA meetings and an explosion in the blogosphere, and it was a topic of utmost importance for me during the course of my pregnancy.  It amazes me still that meters are "allowed" to be 20% off, and that we almost have to choose accuracy over cost when it comes to test strips.  (More on that later.)  And while the ADA panel of guests answered questions, I still couldn't help but wonder how the ADA spoke for me, as a person with type 1 diabetes.  (More on that later, too.)  

But the Summit itself wasn't about the discussions or the agenda of our host Pharma company.  (Even though, and I'm being completely honest here - I'm impressed that Roche wants to sit in the same room with a bunch of bloggers.  We aren't known for being quiet or demure, that's for damn sure, and we don't have a penchant for butt-kissing.  So they get us and our opinions, raw and unadulterated.  Yet, this is the second year they've invited us to meet with them.  I remain impressed.)  The Summit is about bloggers getting to know one another offline, and whether or not Roche understands that aspect wins out over any Pharma agenda, it doesn't matter.  People power wins over scheduled discussions.

So thanks to the Pharma company that dared to play host to bloggers for the second year in a row.  And thanks to the diabetes blogging community, which plays a huge part in improving my emotional diabetes health. 

(Oh, and thanks to the Photobooth, which let Scott and I pretend to be lions in the first shot and let us see up George's nose in the last one.)

February 17, 2010

Billing Errors.

I believe this is what's holding them back from making progress with our bills.Yesterday, the mail arrived.  There were catalogs for clothes (mmmm, can't wait until May!), letters from friends, the crappy bills that keep arriving even though we didn't forward them to our new address, and oh yeah, that one bill from my mail order pharmacy.

For a thousand dollars.

Dated January 30, 2009

So, being the rational and patient woman that I always am, I ripped up the envelope it came in, cursing under my breath like my temperamental buddy, Yosemite Sam.  Punctuated each tear of the paper with "fricka-frakin' insurance bill dagnabit ..."

And then I called the mail order pharmacy company.

"Thank you for calling Byram Health Care.  Your call is important to us."

That was enough to start pushing me a little closer to flipping out, even though it was just a recording.  My call is important?  How important is my business with you?  You're billing me over a YEAR after whatever happened, happened.  After entering my account number and social security number and date of birth and favorite color and pressing "pound, star, pound" to confirm that yes, John was indeed my favorite Beatle, I finally got a human being on the phone.

The woman who answered was very nice, and it's not her problem that I was receiving a bill for something from January of LAST YEAR.  So I was as patient as I could be.

"I just received a bill, dated January 30th, 2009, stating that I owe over a thousand dollars for pump supplies.  Can you help me solve this problem?"

She put my information into the system and pulled up my record.  After a quick discussion about the invoice number, she launched into a speech that sounded so well-rehearsed, it scared me.

"This claim was under review as of June 2009, but spans the course of the entire calendar year for 2009.  It has just come out of review and is now being billed to you, as you see there on your invoice.  Your insurance company has denied this claim stating that these diabetes supplies aren't covered under your DME clause and therefore you are responsible for the remaining balance for these insulin pump reservoirs.  In the event that you disagree with this statement, you'll need to contact your insurer and have them contact us to resubmit the claim."

"Oh hell yes, I disagree.  So I need to call the insurance company and pass the buck back to them?"

"Yes.  Have them contact us with their resubmission of the claim."

"Okay, but confirm this for me - this isn't my problem.  This is an issue between you guys and the insurer, right?"

"That is most likely the case, but you'll need to talk to your insurer."

So I called Oxford Health.  And their guy told me that Byram had submitted the claim to Oxford with incorrect billing codes, forcing Oxford to deny the claims for these supplies.

"Even though you guys approved these items for over three years?  And it's not like anything changed?  So it's just the billing code that was different, and that's not even my fault, yet I'm receiving the bill?"

The guy from Oxford confirmed.  "You need to call Byram back and tell them that they need to resubmit the bills to us with this billing code (and he read off some series of numbers to me, that I feverishly wrote down and then promptly doodled cats around - I was fired up, but still easily amused), and then that should start fixing this problem."

"Okay, so let me confirm.  This isn't my fault.  Or my problem.  I'm not on anyone's 'bad list,' and this is an issue with you guys and the mail order pharmacy, right?"

"That's correct, Mrs. Sparling."

"Fantastic.  You've been very nice.  I hope we never have to speak again."

And then I called the customer care center at Byram, one more time.  And this is where I almost got into my car and drove to wherever Byram is located, so I could just find this girl who answered the phone and shove broccoli spears up her stupid nose.

After explaining the basics, and after this new girl brought up my account, I said the following:  "This bill I'm looking at isn't really my problem.  That's been made clear to me by speaking with your associate and then the rep at Oxford.  So can you help me out with this billing issue?  I've been told it's a matter of coding, and not an actual insurance denial?"

And this girl actually said this to me.  "Um, so you want me to resubmit this with a new code?"  Big, big sigh.  "I have to resubmit these to your insurance company?  That's going to take a long time."

I snapped.  BSparl kicked indignantly, egging me on.  "You are upset because you have to resubmit the bill because YOU guys screwed up the billing codes in the first place?  You are giving me attitude - you are really out of line with that, by the way - because you have to do your job, only correctly this time?  Honestly?  I'm looking at a bill for $1000 that is the result of a billing code error, not my error.  And the billing codes are from your side of things.  So this is your error.  I am not paying this bill just so you can avoid doing your job.  Right?  I mean, you have to see where I'm coming from."

Big sigh again.  "I'll have to spend tomorrow resubmitting your claims.  You'll need to call back tomorrow."

"That's it?  So you're on this?  And again, this isn't my problem, right?  I don't need to do anything?"

"No.  You don't need to do aaaaaanything."  Drawing out the A-sound, like I was the one not doing my job.

"Great.  Thank you very much for resubmitting those.  And hopefully tomorrow we'll be all set."  

Co-pays are one thing.  Insurance premiums are another.  But being billed a thousand dollars because someone entered the wrong code and now is griping about fixing the error?  That's a surefire way to piss off a pregnant lady. ;)

October 19, 2009

BlogWorldExpo: Medical Bloggers Make Their Debut.

Last week at the BlogWorldExpo new media conference in Las Vegas, Nevada, the medical blogosphere staked its first claim, with the very first medblogger track taking place on October 15th.  The medblogger track was co-sponsored by Johnson & Johnson and MedPage Today, and they flew us out there and put us up, which was quite jazzy of them.  (Actually, the whole thing started with Kim on Emergiblog raising her voice.  She got this ball rolling, big time.)  I joined the BetterHealth crew and represented for the patient bloggers.

And by “represented,” I mean that out of four different panels totaling 16 participants, I was the only patient blogger panelist.  I stood out as the “one without a medical degree” and there are no initials after my name, but I did my best to show the medical blogosphere that patients are a powerful voice in this community, and that we are a growing group in the blogosphere as a whole.

I participated on the “The State of the Health Blogosphere:  We’ve Come a Long Way, Baby” panel, with fellow panelists Kevin Pho of Kevin, MD and Nick Genes of Blogborygmi, moderated by the always-fabulous Kim McAllister of Emergiblog.  And we went first, which was both nerve-wracking and exciting - nothing like kicking off the BlogWorldExpo medblogger track!

Photo courtesy of Doctor Anonymous.

We discussed how we all started in the blogosphere, citing who was already out there when we started our blogs (and I mentioned good ol’ Scott Johnson as one of my favorite originals!), and how the public perceived blogs back in the day.  (Back in the day being like 2004/2005 – the Internet is a time warp.)   I talked about how I wanted to find others living with diabetes, instead of constantly coming across the internet health horror stories, and when I couldn’t really find what I was looking for, I decided to create it for myself. 

“It took me a while to say the word ‘blog’ without stretching out the ‘O’ a lot.  ‘Blaaaaaaaaaaag.’  No one I knew wrote a blog, and they didn’t know what a blog was.  It seemed a little bit like a joke – who the heck is going to want to read this online diary stuff?  But it turns out that I wasn’t the only one who was looking for other people living with diabetes.  And once the comments started, and the emails from complete, warm-hearted strangers started coming in, I realized the impact that patient blogs could have on other patients.”

“But I also realized the intense impact that blogging could have on me.  It made me feel like I had a place to share the emotional side of my disease, emotions that I battled constantly but doctors didn’t really ask much about.”

It was a very cool experience, sitting there as a panelist with Kevin and Nick, two influential medical bloggers who represent the practitioner perspective with class and confidence, knowing that patient bloggers are now part of this conversation.  It’s not just a bunch of doctors sitting around, talking about our diseases and our conditions without having a portal into what real life is like with that disease.  Now they can tune into our patient blogs and get that perspective, one that could help shape the way they deal with their patients.  Our voices, as patients and the caregivers of patients, are crucial in the greater medical blogging discussion.

I missed the memo on the crossed arms thing.

There was also a lot of discussion about Grand Rounds, the premier medical blog carnival created by Nick Genes.  Everyone on the panel pretty much agreed that Grand Rounds were an extremely effective way to get a weekly snapshot of the best of the medical blogosphere.  “I can’t remember where I first stumbled upon Grand Rounds, but it seemed like the perfect way for me, a diabetes patient blogger, to connect with other medical bloggers outside of my diabetes bubble.  It was like literary networking.”

Continue reading "BlogWorldExpo: Medical Bloggers Make Their Debut." »

July 28, 2009

Charlie and the Twitter Factory.

I have a lot to catch up on, including a post about Lee Ann and I braving the Indiana highways and then the BlogHer conference, but let me just say this first:  I like Charlie Kimball.  I like him as a person, as a fellow diabetes advocate, and as a race car driver because, really, that is just damn cool.  So there's my big disclaimer:  I like Charlie.  (I even have a post ready to write about meeting up with him at Friends for Life a few weeks ago.)

So I do not like to see Charlie, the guy, under such attack for the @racewithinsulin Twitter account.  Plenty of bloggers are up in arms about the Novo/Kimball union and its steps into social media, like John Mack from the Pharma Marketing Blog.  I felt a little protective of my fellow PWD, which prompted me to do a little investigating.  I wanted to know how Novo, the company, feels about this whole Twitter/marketing/Pharma thing.

So I asked them.

Charlie Kimball and Kerri Sparling.  Dressed almost identically.  Weird.

Ambre Morley, Associate Director of Product Communications at Novo Nordisk and I met at the Friends for Life conference, and I told her that I was concerned about the backlash towards Charlie and the branded Twitter account.  "I have a ton of questions, and I know some of the PR people who are questioning the account might do well to hear the answers.  Like why the account doesn't follow anyone.  And what's the deal with those blatantly branded Tweets?"

She agreed to answer my questions.  And since Novo is the first I can think of to jump in with a pharma-branded Twitter account with a "real face," I wanted to hear the answers.  (Note:  All links to pages within the answers were added by me.)

Kerri:   Charlie is a valued member of the diabetes community, so I can understand why you guys chose to partner with him. But what made you decide to start a Twitter acct?  

Novo:  When we decided to partner with Charlie, we explored a number of different opportunities. He was already "tweeting" personally, however, when he asked about tweeting about our partnership, which includes the insulin he takes everyday, Levemir and NovoLog, we knew had to figure out a way to do it right. We didn't think it was right to ask him to put the prescribing information on his page and monitor every time he tweeted about diabetes. So we created a new account that we could ensure met all regulatory guidelines. Why Twitter? He was already doing it, so we wanted to create something that would easily fit into Charlie's lifestyle.
 
Kerri:  Why are Charlie's personal Tweets and his Levemir Tweets exactly the same?  
 
Novo:  It's important to understand that Charlie does all of the tweeting, both on his personal page and on the Novo Nordisk Race with Insulin page. It's up to him. They aren't always exactly the same, but where convenient and appropriate, he uses the same tweets, as it's probably easier to copy and paste. There are times when the tweets are different.
 
Kerri:  Does Charlie write the Levemir Tweets or is there an editorial vetting proces? Can you explain the thoughts behind the "branded" Tweets?  
 
Novo:  Charlie writes all of the tweets, including the Levemir and NovoLog branded tweets.  We provided him with instruction for how to tweet about the brands and comply with pharmaceutical regulations. So, anytime he tweets the words Levemir or NovoLog, a link to the product prescribing information has to be included.
 
The reason? Take a look at the page from your computer. You see the patient safety information on the left, along with a link to novonordiskcare.com on the right, which contains all of the prescribing and other important information. The challenge is, because the majority of Twitter users read and update their accounts from mobile devices, we knew most people would not see that information if Charlie wrote a tweet. That's why the prescribing information is there. It's required. It's similar to when a company does any stand-alone promotion of a product, that information has to be there.
 
More importantly, it's important to understand that the branded tweets aren't random. Charlie takes Levemir and NovoLog, so when he decides to tweet that he just took his insulin, he really just did. We don't believe a pharmaceutical company has tried to do branded tweets before, much less with a spokesperson who takes the insulin. But we're still learning and trying to figure it out. It's been a fun and definitely interesting time.  
 
Kerri:  Why doesn't the @racewithinsulin Twitter acct follow or reply to anyone? What kind of regulations must be in place for a Twitter acct of this kind?  
 
Novo:  While Charlie is the face of Race with Insulin, it is a corporate account for Novo Nordisk.  At this time, we aren't able to follow anyone, as pharmaceutical usage of social media is very regulated and we want to ensure we do it right. This is just the first phase and as we grow and learn, hopefully we will be able to follow people in the future. We are also open to suggestion.

After speaking to you, we took your advice and set up an e-mail address for the page. (Editor's Note:  I suggested that the account would seem a bit more accessible if they, at the very least, had some contact information.)  You should see an image update in the next week with the new address. But as I know you know, social media moves in real time and we haven't quite caught up to that speed in pharma. We're making baby steps but we're trying to stay in the race.
 
Kerri:  We know you guys are breaking new ground with this Twitter account, so what should we expect as part of your growing pains?  
 
Novo:  We're still learning. We want to do a lot, but we also understand that the pharmaceutical industry is the most heavily regulated in this country. We won't be able to do things as easily as say computer or food companies, but you have our commitment that we do plan to try to engage. Stay tuned.  
 
Kerri:  How has Novo felt about the blog backlash to @racewithinsulin, and how has Novo moved to protect themselves and Charlie?  
 
Novo:  If no one talks about what you do, you probably haven't made much of an impact. That said, it would be nice if the talk was all positive and more importantly, true. We encourage people to ask questions and give us an opportunity answer. We're pretty transparent about our challenges and open to discussion about any ideas to make it better. There were some false assumptions gaining traction, but that's also the nature of this business. You can never please everyone, but you can only hope that social media will adopt some of the principals [sic] of traditional journalism and report the facts, before making assumptions. We're working to move quicker to respond but also encouraging anyone to just ask. As for Charlie, he has been great. He's in a profession where he already has a lot of attention on him and is working with us to help make the page a success.

Kerri:  What do you want the Twitter community to understand about the aims of @racewithinsulin?
 
Novo:  We are very happy to be working with Charlie and wanted to reach as many people as possible. Twitter was an application that Charlie was already using and we wanted to find a way where he could continue to do so and incorporate our relationship.

It's still new and we're just getting started, but we hope to continue to find new, innovative ways to continue to reach everyone with his powerful message that diabetes does NOT slow him down!

*   *   *

I'm glad Novo went out on a limb and dove into the social media space, and I'm also glad that they agreed to answer my questions.  Thanks, Ambre!  What are your thoughts about Pharma in the social networking space?  Don't just say "Hey, they're doing it wrong!"  If you think it's so wrong, what would make it right? 

July 27, 2009

Roche Diabetes Summit: SUM Edition.

You have already read some great wrap-ups of the Roche Diabetes Blogger Summit from some of my fellow bloggers - Amy, Manny, David, Gina, Christopher, Bennet (Note: Mr. YDMV's updates are fictional.  Well, mostly.), and Sandra.  I just wanted to chime in with my thoughts and add my photos to the collection.  :)

We met up in Indianapolis on Wednesday afternoon, after I had flown from LaGuardia to Detroit and then to Indianapolis.  (Yes, I took two flights so that I could avoid taking the itsy bitsy plane that Roche originally had scheduled me on.  The travel people at Roche were very patient and understanding regarding my travel issues, and I really appreciate their compassion.)

But apparently my fear of flying wasn't kept within the travel coordinator circle, as several people from Roche mentioned at the dinner that "Some of us even traveled despite our fear of flying," and heads slowly turned towards me, to which my only xanax-laced response was "I walked."  

Good thing I don't mind being laughed at.  Or with.  More on that later.  

I'm no fool - part of what Roche wanted was to be talked about in the blogs.  Hence why they asked many of the diabetes bloggers to visit their headquarters and brainstorm about social networking and Pharma involvement.  But Roche did this right - they paid for our travel, they paid for our hotel, they made us feel as though we were valued guests, and they listened when we offered our opinions.  We didn't travel on our own dime and feel taken advantage of, but instead appreciated.  That's a good start, in my book. 

It was really a groundbreaking sort of event, with Roche having the balls (go ahead and quote me on that, Rodger the Social Media Warlord) to invite a pack of opinionated bloggers into their house to talk frankly about social media and Pharma - specifically, THEIR Pharma.  We talked about ways that Pharma can appropriately enter the social media space without being received by a mob with torches and pitchforks.

In my opinion, Pharma needs to simply embrace the fact that transparency, honesty, and being open to feedback can make a huge difference in how they are perceived by their patient base.  For Roche to sign on to a social networking site by creating a fake profile or pretending to actually live with diabetes, well that's just plain stupid because we'll sniff them out in a second and destroy them.  However, if Roche, or any other Pharma crew, is willing to put a face to their company and leap into social media by saying, "We aren't living with diabetes, but we want to help improve the lives of people living with diabetes - that's why we are here and that's why we want to be engaged" ... that kind of disclosure and transparency will go a very long way.

I gave the example of Albert Chen, a member of the Agamatrix team who, with grace, honesty, and class, joined the diabetes blogosphere with his blog "What Is Diabetes?"  He said, right in his bio, that he didn't have diabetes, but wanted to better understand the community he was working to serve.  That, Pharma companies who are reading this, is the way to work with the diabetes online community.  Get to know us.  See that we are more than just the sum of our co-pays.  Remind us that Pharma has a face, and more importantly, that you remember we are people, too.  

The Roche team didn't always directly answer the questions, but I can understand that "Why aren't strips cheaper" isn't a question that they can answer without sounding like a business.  However, they need to understand, and always remember, that their business is our life.  So while that chasm remains wide, I think this was an important step in beginning to bridge that gap.

The gap - we're making efforts to bridge it.

June 26, 2009

The Faces of the Philly Meet Up.

The conference I'm speaking at this week is about social media and how pharma and patient bloggers can work together to benefit the patient community.

My main points are to drive home the fact that even though we might be perceived as "target markets" and "diabetes consumers," we are people first.  We're people before we're patients, before we're anyone's consumer base, before we're diabetics.

People.

And last night, I had the distinct pleasure of hanging out in Philadelphia's Black Sheep Pub with a bunch of people who just happen to have diabetes.   Sitting among all these shining faces (because, holy crap was it hot in there), I wished that Big Pharma was there with us to see the real people behind the diseases about which they create power point presentations.

The D-Bloggers Descend on Philly
 Hey Pharma!  See us!  We're your "target market!"

It was great meeting everyone last night!  Thanks for coming out in that heat, and I'm looking forward to seeing you guys again!!

April 10, 2009

Color Comparision Chart.

As I mentioned yesterday, I stumbled upon some diabetes relics at my dad's house the other day.  Now I'm totally in memory lane mode.  :)  I found this staple of my early diabetes management:

The Red Diabetes Book

The "Red Bible."  This book was given to my parents by the Joslin Clinic when I was diagnosed, and it held the supposed answers to any diabetes questions.  (You can see on the cover there where I was practicing spelling "restaurant" many years ago.)  I thumbed through the book and found plenty of recipes and snack ideas, all using the old food exchange philosophy.  Pages and pages of things I couldn't eat, and small sections of what my lunch options were. Half a cup of spinach, one sugar-free popsicle, rice cakes with peanut butter, those peanut butter nab things ... places to buy food scales and measuring cups ... countless pages focusing on food.  I always hated that assumption that a healthy diabetes life was achieved solely through my dinner plate.

There were three pages on handling diabetes in school settings.  No mention of 504 plans or testing in the classroom or anything about how my fellow students would react.  A short description of the symptoms of low blood sugar and how to treat it, but that was about it.

The pages on blood sugar monitoring and management brought me back to my diagnosis days.  When I first started testing my blood sugar back in 1986, we used a machine that took 120 seconds to produce a result and the strips were color-comparison ones that had to be wiped with a cotton ball and then plugged into the meter.  The color comparison chart seems so remedial compared to the UltraLink on my desk or the Dexcom on my hip.   Here's a screenshot of what we'd compare the color pads to:

Chemstrip color comparison chart

Not much to go on.  (And the numbers were too easy to manipulate.  I remember wiping the color pads on the strip with rubbing alcohol to make the results seem lower.  I wasn't the most responsible kid.)

The thing that kills me is the lack of focus on the emotions of diabetes.  There were only TWO pages on "living with diabetes."  How stress can affect blood sugar management.  How important the impact of a support network is for acceptance and dedication.  I want to rewrite this Red Bible and flesh out more of the parts that count.  Support groups, diabetes blogs, communities ... this is the future of diabetes management.  Meters have improved a little, insulin has improved a smidge, but our methods of support have leapt by such enormous margins that my future health is already brighter.  

My Joslin appointment is next week.  And believe me, I'll be talking about you guys there.

April 06, 2009

Bertalan Meskó: Of Genetics and Johnny Cash

Berci Mesko:  The Guy 2.0When it comes to Health 2.0, Web 2.0, and other Stuff 2.0, Bertalan Meskó is The Guy 2.0.  Berci and I have been bantering back and forth for the better part of the last two years, and I'm continually impressed by his dedication to improvement the landscape of health online and also his ability to be a normal guy. 

Kerri:  Berci, you've been a star in the medical blogging community forever (and a friend of mine for several years now), but many patient bloggers may not be familiar with your work.  Can you tell us a little about yourself, on a personal level?

Berci:  You're the first one who didn't start with a question about web 2.0 and medicine. So I will graduate from medical school in Hungary this August, then I plan to start PhD training in genetics because I've been dreaming about becoming a geneticist for almost 18 years now. But in my second life, I work online and try to help patients, medical professionals how to enter the web 2.0 world. That's why I've been running Scienceroll for 2 years and I also launched the first web 2.0 guidance service at Webicina. This service is totally free for patients. Anyway, I love playing football, squash, I'm a movie fanatic and try to learn to play the guitar in order to sing Johnny Cash songs properly.

Kerri:  What is ScienceRoll and what made you start blogging?

Berci:  Scienceroll is a medical blog where I focus on personalized genetics, which is my research topic, and the role of web 2.0 in the future of medicine. I launched this blog because I wanted to share my thoughts on science news and articles with people from around the world. Later it turned out it became my best channel so people with the same interest could find me easily and invited me to give presentations at several conferences and beautiful places (e.g. University of Yale or the centre of World Health Organization). Actually, I can travel a lot due to my work on Scienceroll so I feel quite lucky to be involved in the health 2.0 movement.

Kerri: What is your role in Health and Medicine 2.0?

Berci:  I feel I'm somewhere between medical professionals and e-patients. I think my job is to help them find reliable medical resources and useful web 2.0 tools from quality medical podcasts to educational Second Life sites. Through Scienceroll and Webicina, I really hope I can provide doctors and patients with tips on how to be productive online, which medical blogs to read and which medical communities to join. To achieve my aims, I created free packages for patients such as the Diabetes 2.0 or Depression 2.0 package in which I list the best blogs, blog carnivals, wikis, podcasts and many other web 2.0 tools focusing on a specific medical condition.Diabetes 2.0 package on Webicina

Kerri:  How can patients and doctors use the web to their collective advantage?

Berci:  Doctors can save time and effort by using RSS so they can keep themselves up-to-date in their fields of interest quite easily. Following hundreds of medical journals and websites takes only a few minutes a day. They should also build an online image for themselves as patients tend to do a search for the name of their doctors in search engines. So their practices should be represented online properly.

Patients can find support information about their medical conditions, or can find doctors via the internet. They can meet each other virtually in Second Life, or share their health stories through community sites. I could also mention the personal health records systems that are also going to revolutionize healthcare.

Kerri:  How is it that you are in your early 20's and yet one of the most influential health bloggers in the (dare I say it?) world? What's the key to achieving success as a medical blogger, in your opinion?


Berci:  I have 3-rules: openness, consistency and commitment. You have to be open to new things, that's why I try to answer all the e-mails I receive. Consistency is important, because if you blog regularly, readers will come back to check your content. Commitment is the No.1 rule as if you believe in what you write about, sooner or later, it will work. But to be honest, I think I spend too much time online (mostly at night) so I can be involved in several different projects from Wikipedia through medical blogging/microblogging to organizing medical events in Second Life.

Kerri: What do you see as the future of health and medicine on the web?

Berci:  I believe e-patients will change the way medicine is practiced and healthcare is delivered. E-patients are patients who find information online, want to communicate with their doctors via webcam or e-mail, blog about their health or just share their stories with other patients dealing with the same medical problems.

According to Pew Internet Research, the number of e-patients is exponentially growing, while the number of web-savvy doctors is not, so there will be a huge gap. I try to close this gap by launching the first university credit course focusing on web 2.0 and medicine for medical students. Now it's in the second semester and I hope no students in Debrecen will graduate in 5 years without finishing this course.

Today's physicians and medical students must meet the expectations of e-patients whether they are open to it or not.

Kerri: I know you don't just sit around all day banging away on your computer keyboard - what else do you do, besides shape the medical blogosphere?

Berci:  From morning until the afternoon, I do clinical rotation at local clinics as a part of my last year duties in medschool. In the afternoon, I spend all of my spare time in the genetics lab I've been working in for 2 years. I hope I can publish my research findings this year (my thesis: gene expression patterns of chronic inflammatory diseases). I'm a sport-fan and I like being with my friends so I try to live as normal and full life as possible.

Kerri:  Thanks, Berci!!  See you for tea sometime this fall.  :)

February 23, 2009

Health 2.0 and Bloggy Bits.

I'm so blogging this.  Dude.I wrote this post on Diabetes Daily a few weeks back, but I wanted to share this here, too.  When it comes to patient blogging, there are plenty of people who want to know more and who benefit from the collective sharing of our stories … including those of us who are blogging:

Who Benefits From Patient Blogging?
 
I blog, therefore I am … a better diabetic?

Not exactly.  Even though I’m blogging about diabetes, I am not “a perfect diabetic.”  My blood sugars still ping all over the place at times and I’ve confessed to consuming more than my share of E.L. Fudge cookies.  I am not a perfect patient, and I won’t ever be.  (Is there even such a thing?)  Blogging about a disease doesn’t make me any less “diabetic.”  There is a misconception about patient bloggers – that we have it all figured out.  

Patient blogging is so powerful because it isn’t about finding perfect control or flawless diabetes management, but about sharing what real life with diabetes is like. This was a topic I blogged about early last week and the response from the community was overwhelming.  Patient blogging brings people with diabetes together, confirming time and time again that we aren’t alone.  It’s about sharing best practices and little coping mechanisms and those resonating moments of “Hey, me too!”  It’s the support community we need when diabetes becomes a little “heavy.”

But patient blogging doesn’t just benefit the patients.  Writing daily about diabetes has connected me with doctors who read to better understand the challenges of diabetes “au natural.”  Even though they take care of us and help us make sense of our medical condition, the closest they get to “understanding” is through our blogs.  Patient blogs offer a window into the personal side of disease management, one that our doctors wouldn’t see unless they bugged our homes or camped outside our windows.  By simply tuning in to the lives of bloggers who represent their patient base, doctors can better understand, and better treat, their patients.

My own doctor at the Joslin Clinic reads my diabetes blog.  Sometimes she emails me links to articles she’s come across that speak to my personal goals.  Other times she helps me out with things like insurance appeal letters.  She knows what kind of insulin I’m on and how I attempt to dose.  But through reading my blog, she also knows that there is so much more to me than my diabetes.  She sees stories about my life – my wedding, traveling, stupid cat stories – intertwined with diabetes moments.  It’s not just managing my diabetes specifically, but helping me manage diabetes in my life as a whole.  

The beauty of patient blogging is that it touches so many lives:  the doctors who want to learn more about their patients, the parents of children who cannot yet describe how they feel; the spouses of people living with this disease; the friends and families; the readers who tune in every day; and the bloggers themselves.  “Health 2.0” and other buzzwords don’t properly capture the positive influence of the diabetes community.  Through these moments of sharing, we learn from and support one another, and live fuller lives as people with diabetes.

And my health - my life - is better for it.

Thanks for hosting my post, Diabetes Daily, and feel free to share how you've benefitted from patient blogging, either as a blogger, a reader, or as a medical professional.

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