Let’s Keep Talking

I’d like to keep talking about the 2010 Roche Social Media Summit.  There is unfinished business.

I haven’t read many blog posts about it yet (I’m chronically behind on my blog reading.  I will get to them soon – I promise!), so maybe a lot of this has been covered somewhere already.  Forgive me if I’m covering ground already stampeded flat.

I felt some subtle ripples of discontent in the comments to my blog post, and I want to explore those more, and see if I can’t encourage more of you to share your thoughts with me.  One person who needs no encouragement to share his thoughts with me is Dean.

I am so thankful for my friend Dean (deanusa). He lives in the Twin Cities Metro Area, and I’m lucky to get an opportunity to meet up with him, face to face, pretty regularly.  Dean has lived a long time with type 1 diabetes, and I always learn so much from him.

Dean commented that he may have believed the Roche thing was something more than it really is.  Which got me thinking.  What do people think the Roche summits are?

He shared with me some of his thoughts, and there was some additional feedback from Lyrheca & Mike.  I also had a chance to talk with Dean in person.  Seems like these Social Media Summits, which have HUGE potential to change the world, are coming off as nothing more than marketing.

I hate that.  Or I hate that they are perceived as that.

Maybe it’s true?  I don’t know.  There is sure to be some marketing benefits to Roche, as everyone who attended writes and talks about them at least once a year, but I think there’s more.  At least I hope there’s more.

I will be the first to admit that I’m naive about much of this stuff, and I’m also optimistic to a fault.  Could it be that Roche is still curious about this new “Social Media” stuff, and they don’t really know how to get involved legitimately?  Are they scared of all of the regulations and possible trouble it may cause them?  Are they a big, slow-moving company?  Sure.  But two years is a long time They have had since July of 2009 (thanks Mike), are they doing enough, fast enough?

So what is it really all about?  I don’t feel like I know for sure.  There’s still some guarded skepticism I have, though I can’t really identify where it is coming from and why I’m having such trouble letting go of it.

I’ve worked hard over the past bunch of years to build a reputation as a stand-up guy.  It is important to me that you feel I’m trustworthy, ethical, and honest.   Am I damaging my reputation by attending these sorts of things?  As an unemployed freelance writer/consultant,  I could never afford to attend this stuff unless my expenses are covered.  Is that Ok with you?

I want to know what you all really think about this stuff.  I love the opportunity to see my friends, which was the most important thing for me.  I also learned a lot and hopefully we shared some of our opinions with the folks at Roche.  Having an opportunity to talk openly with the ADA would never happen unless some big company leverages their influence to get them in there (which was very brave for both of them).   We’ll see where it goes from here, of course, but are you Ok with how it all went down?

When I talked to Dean about what he wanted to see from it, he said that he would like to see Roche interact with the online community more often through the year.  He would like to see them really work to build a relationship with everyone out there, and do good things for the community.  To him, it seems like a big, once a year, flash in the pan type of thing, which dies down until next time.  How does that sit with you?  Do you agree?  Disagree?  What are your thoughts?

There are a few more things I’d like to clarify and ask about as well:

– I am not exactly clear on what “Social Media” means.  Is it possible that there is more to “Social Media” than blogging – which is where I come from?  Who else needs to come to these things?  Are we too heavy on bloggers, and not heavy enough on other “Social Media” channels? What are those other channels?
– I know nothing about how people get picked to be invited.  I wish there was a little more transparency here. I think I have paid my dues in the Diabetes Online Community (and hope to continue doing so), but should that mean I’m automatically invited to stuff like this?

Please folks, let me know how you feel about this stuff.  I need your input to help me know if I’m doing the right things or not.

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14 thoughts on “Let’s Keep Talking

  1. I received my ticket to any event like this the day I received my diagnoses with this dreaded disease. And if any company wants to helps our cause in any way why would we want to shy away from that. As I stated before they can show you their products but you have a choice as to what products you want to use. Maybe this is just a marketing thing but if some good for our community comes of it what is the harm? I would love to be asked to attend something like this. From what Scott has said about being able to connect ADA on a more personal level and the talks about the co-pays and etc sounds to me like a good thing.
    There are times when you just over think things.
    Your doing a great job Scott on keeping us informed on what is happening around our little community Thanks!

  2. Crystal – nobody is out of place in the DOC. Do you live with diabetes? Are you touched by diabetes? ’nuff said. You also bring a great perspective as someone living without health insurance. You’re so right about having to start somewhere.
    Rachel – It would be great to hear from some of those who were helped. I think it would also be interesting to hear from someone who didn’t quite qualify for help they needed.
    Dean – You’re right, we can’t be bought. But anytime free stuff (travel, whatever) or money get involved, things get muddy. Sounds like you feel they should be doing more of this, getting to know us, and us them. I think you have a great point about bashing companies. We need them, they need us. Both sides of the party could do things a little different and/or better. Let’s talk about it, right?
    Leighann – Do you think that it being more for our benefit than for Roche’s, that they were trying to influence us in a way?
    Kassie – I agree completely. More transparency would make thing better for everyone I think. And you’re right, better for them to go slow than to do it wrong (Roche & social media)
    Mike/TabbyCat – thanks for clarifying, corrected my statement above. I too am interested in where it goes from here. I appreciate your input and thoughts on this stuff.
    I appreciate everyone’s input and thoughts on it. Thank you!

  3. I applaud you Scott for posing these questions. You are still tops in my eyes and I can’t imagine your partaking in this event impacts your reputation one bit.

  4. A minor point here. There have been two Roche SMS in approximately one calendar year. It hasn’t been two years.
    Scott, in general I do not object to all my favorite D-bloggers attending this type of event. The benefits of having you all get together are significant; can’t be denied. There cannot be any question that Roche is using the summit as a marketing tool and there is also no question that they deserve kudos for it – in general.
    Like others I am interested in where it goes from here. A yearly, stand-alone event doesn’t cut it. The fact that they added the ADA and AADE were good changes to this year’s summit, but now where does that take the community?
    Fair Winds,

  5. I know that they couldn’t invite everyone, and I also think that Roche and the organizers earned the right to select participants just be getting the ball rolling, but I think that the 2nd event or future events could have/should include a more transparent way for new blogger voices to be included. To me, some sort of open application to be included would be a good thing.
    Now, having said that, I *love* that you guys get to go on a trip to see each other, truly. If the ‘summits’ serve only to keep you all enthused about diabetes blogging, then they are a good thing. And I’d rather a company do like Roche did, and stand up and say, “we’re exploring this social media thing” then pose as something else, or just dive in and muck it up.

  6. In addition to my website about parenting a child with diabetes, I also have been writing a “mommy blog” for four years. That site includes product reviews and I get dozens of pitches every day.
    I have been to many mommy blogger events including trips across the country paid for by the company.
    I can say without a doubt that Roche’s Social Media Summit was much more for the participants’ benefit than the company’s. There was no hard sell, heck they didn’t even send us home with a free meter! (Which I wouldn’t mind trying out the MultiClix or the Accu-Chek meter for comparison.)
    What I take away from social media trips such as this one (whether as a mom blogger or as a d-blogger) is (a) solidifying online relationships in person, and (b) making real person contacts with companies because you never know when you will need one.
    I did take one person aside and give my concerns about glucose meters supposedly marketed to kids and how in my opinion they missed the mark completely (not a Roche product). She was actually surprised to hear my specific complaints and examples of failure as she had never heard them before.
    I’m a very opinionated person (I know, right?) and I would certainly speak my mind had I felt that Roche had a hidden agenda (which I didn’t feel).
    As an example of how I like to use these social media trips, I was invited to cook in THE Betty Crocker Kitchens last year. My kids LOVE yogurt and eat it every single day. But I was concerned about YoPlait Go-Gurt because it has artificial colors, flavors, high fructose corn syrup, and doesn’t use hormone-free milk. YoPlait is owned by General Mills as well as Betty Crocker. On the trip I cornered an exec and had a very lengthy conversation about my concerns about the ingredients in products marketed toward kids. I was very adamant that other parents feel the same way and they need to address this. I handed the exec a written list of my concerns about General Mills products (there were actually a lot more).
    Now whether or not they took what I said to heart and whether or not they had this product in the works (I doubt it because they told me that that regular sugar doesn’t blend as well as HFCS and it would be difficult to replace), six months later they announced Simply Go-Gurt. Guess what? They took out all the ingredients I said should not be in kids’ yogurt.
    My point is that whether or not Roche has motives (because of course they do or they wouldn’t spend the money), the ability for some of us to speak one on one and make real contacts so that we can let our concerns be known is priceless.
    Can change happen over night? Maybe not. But the Social Media Summit opens the conversation between pharma and patient, a conversation that we certainly have never had in the past.

  7. thank you for keeping this alive scott.
    first i want to say that i trust the blogging d world community to be honest in their “reporting” on what happens at the summit.only a idiot would turn down a “free trip” to attend a meeting and hang out with friends.i read a lot of you and i dont think you could be bought for a trip.(a life time supply of “strips” is another story!)
    i also dont see this as sticking their necks out.it has been mentioned nowhere else but in the d community as far as i can tell.nor do i think it is much a revelation that a “supplier” of d products should be involved with the community they serve.as far as things taking time we are really stretching it
    here.if it takes a company 2 years to make a decision they got problems.and as pointed out they have not done anything
    as of yet.
    as far as helping d patients with the card program,well sorry they are way behind the 8 ball in that.every drugstore and the makers of insulin offer help.(i availed myself of the free insulin side of the deal).think about this as being like christmas day.
    it comes once a year.and then we dont think about it anymore.jump in or get the hell off the pot.why isnt there a “office” or a person to contact there?why cant we put a name or a face to the organization?if they are just pulling info off the net well isnt that sort of a cop out?its like dating your sister/brother.it isnt going to lead to anything.
    i know im jumping all over here(im running late) but this is important to “us”.im not trying to bash roche.in fact im sick and tired of all the bashing that goes on against all the companies.we cant move move forward if we hate the ada the meter companies the strip makers the insulin makers and the food world.we need to see that d is not a one size fits all condition.
    i give roche 2 thumbs up,5 stars,a gold medal and a kiss on the ass for bringing in the ada.that ball can not be dropped. this is our organization.whos going to help us?dentist s?podiatrist?

  8. Crystal makes a great point – you have to start somewhere. Change does not happen overnight. The fact that Roche reached out to us, to find out what is important to us, to get the ADA involved, it’s a start.
    Just because a reader doesn’t see the impact of what’s been done, perhaps the assistance program has helped someone, one of those people disconnected from the ‘net/social media/whatever you want to call it. I wish Roche would bring someone like that if they hold another summit. 😉

  9. Great post Scott.
    I am starting to have reservations about it all too…. I still feel so Out of place in the D-OC. Who am I to be invited to such an event??
    Communication and dialogue are key. It’s where all things start. 2 years may seem like a long time to us Dfolk, we live moment to moment, as Bernard said, your time is Not our internet time. It’s not our Dtime either….. but things like this Do take time. I commend Roche for sticking their neck out. For ALL of us sticking our neck out, accepting the invitations, expenses paid trip and getting together to voice our concerns.
    All good things have to start somewhere….
    I am all for the resources to be available NOW for ALL. But I’m realistic. So I struggle every day with my own decisions, as we all do. I have what I have. I manage best I can. No one can take that away from me, not even a corporation with loads of money. I am me. All I can be. I want better for all. I want better for me.
    Starting is the hardest part and that’s been done…..
    of course we hold out for more. All of us cannot please everyone. It’s impossible. We each do what we can but first and foremost, we need to care for ourselves.

  10. Great question Tina.
    There are a couple of things that come to mind when trying to answer that question.
    1. They got us a window of conversation with some heavy-hitters at the ADA. While that may not manifest right away into tangible, on-the-street diabetes care improvements, it’s still a huge, important step.
    2. They talked about some work on the patient assistance programs, and prescription co-pay cards, as well as some activity in what they call “The Diabetes Care Project”. Honestly, I’d need to do more research to find out more about that stuff. I would venture a guess that all of that stuff was already being worked on before the meetings.
    So, in the end, the answer I have is “I don’t know”.

  11. I applaud any and all efforts to involve the voice of the people–those who live day in, day out, with diabetes. But the name “Roche Social Media Summit (which is not the official name selected by Roche, correct?)” is unfortunate. A true diabetes social media summit would be open to all, in person and online. Of course, somebody’s gotta pay for all that bonding and goodness!
    A true diabetes social media summit, while perhaps subsidized by for-profit companies in the diabetes space–as are many for-profit and non-profit diabetes awareness and education events–would be about more than bloggers. Hey, I love bloggers. Especially d bloggers. But I also get much important info and support from d Tweeters (#bgnow, #bgwed, #diabetes, #sweatbetes) and d facebookers and active participants in online communities such as tudiabetes.org and diabetesdaily.com
    I commend Roche for getting involved, for talking to some of the people (instead of market researchers–drat them and their stats), for finding a meaningful and cost-effective way to do this type of research. And I commend attendees for disclosing the “my trip was paid for” info.
    I look forward to the ongoing dialogue–especially the pieces about “how do we reach people who aren’t so computer savvy?” Because of the 18 million people diagnosed with diabetes, there are many, many who don’t spend as much time on a keyboard as you and I, Scott. But they still need info and encouragement and support. Every day.