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Expectations.

Over the last few years, there have been several company-sponsored events where people involved in diabetes social media are invited and participate in a variety of discussions.  I’ve been having some trouble wrapping my head about the respective expectations at these events, and how to capture my thoughts in a productive way.

I love, love seeing my fellow PWD in the same room, bringing our online connections offline.  I am really grateful that these companies afford some of us the opportunity to sit in the same room and actually talk with one another, or have dinner with one another, or just be in one another’s presence in “real life.”  Needing a test strip and being able to borrow one from across a table is an amazing experience, especially when I spent a lot of time prior to 2005 feeling like I was the only diabetic I knew. 

My expectations at these kinds of gatherings is that these companies are trying to get to know the diabetes online community, and that they also wanted to tap us for ideas, marketing opportunities, and organic PR.  While I do believe that many people in these companies care about us as people, and vice versa, with members of the social media space getting to know the real people behind the companies, I know there is a definitive marketing spin to everything that happens at these meetings.  It’s almost impossible for there not to be, because their job is to manage their franchise.  

I think the people in these rooms are lucky.  Those who are voicing some perspectives from the diabetes community are lucky because they have the opportunity to see one another in person, and can hopefully represent the viewpoints of people with diabetes with respect, integrity, and honesty.  The people working in these companies are lucky because they get to hear real concerns and praise from their actual target market, and they get an in-person feel for a snapshot of this community.  All that collective "luck" goes a long way in furthering the patient's voice being heard by Big Pharma, hopefully contributing to change for the good on all levels.

But the tides are turning.  There has been some real progress, in terms of things like patient assistance programs, etc. that have come as a direct result of these meetings.  And I know that I am personally inspired when I see a company’s culture and compassion, first hand, as a patient with diabetes.  But if companies have the budget for meetings like these, I believe we should be using these meetings to benefit the community as a whole.  If we have travel, lodging, and meals as part of these discussions, I know we can see that money go into community outreach, too.  Or instead.  Diabetes camps, or college scholarships for people with diabetes, or assistance programs for the under-and uninsured would benefit from the same attention that some social media representatives are receiving.  If these pharma/blogger meetings are intended to improve the diabetes community, true advocacy and assistance would go a long, long way in that.  What do we, as a community, want to see happen?  If we don't contribute to the agenda, we are just along for the ride.

I don’t know if companies will continue to host these kinds of meetings, but if they do, I hope the outcomes are tangible. I have appreciated the opportunity to see behind the curtain at some companies, but I am hopeful for a shift.  A change.  Outcomes can be as simple as connecting two PWD who live in the same town or as complex as trying to supply insulin to third world countries, but they need to benefit more than the people sitting in the room. 

These meetings need to be less about pulling back the curtain and more about raising the bar, setting expectations for outcomes that actually make a difference in the lives of people with diabetes. 

No specific reason for this photo, other than the fact that I just liked it.

Comments

This is a fantastic post, Kerri. I feel like you do - I want to see the bar raised. And I have many ideas of how this could be done :). Thank you for bringing up this important issue.

Wow, well said!

A really great post, Kerri. Now that I've been following the DOC (it feels weird to say "in the DOC" since I have few posts as of late....and very minimal traffic) for a couple of years, I had wondered what made each of these events with similar attendees different from one another. It's really heartening to here that from your perspective, some tangible progress is being made and that you are hoping for more.

Thanks for representing us so well, and for considering this side of things. It's really refreshing to read.

Thank you for this. I feel the same as you.

A million yeses! I was trying to explain my thoughts on summits to Amy and Mike yesterday, but failed spectacularly. I think I'll just send them this link and say "This!!!"

Thanks for once again capturing eloquently what so many of us think.

I entirely agree :)

LY/MI

Very well said. As always :)

I appreciate you.

Thanks, Kerri
glad you're back !!

BRAVA!

If we are making a difference I would be just as happy at the Motel 6 with a PB&J. Or even at home, being Skyped in. I would suggest that anyone who feels differently is interested in attending for the wrong reason.

What if one of these companies sponsored a trip to another country (I, of course, am thinking Haiti) to see what it was really like?

I agree that the bar should be raised and I think that these summits are the best way for PWD to be heard by big pharma. The amount of money that pharma spends to make these summits happen is worth it, IMO. Yes, I'd like to see them put money toward more things to assist PWD but how are they to truly know what to do unless they listen to those same people?

I believe they should continue with a good mix of "the same old faces" with some newbies mixed in. More experienced voices need to be there for continuity and new voices for another perspective.

I completely appreciate you, and all the others who attend, for attending and being our voice.

Great post. The first time (well the first time I saw on line) that you guys were all getting together I thought: Hurrah! They get to meet face to face. You all have done so much to help information flow on the internet, it was nice to see you bond in person. But after a few times I started to think "next steps....next steps...." YOu give a LOT Of your time (away from your family) to attend, I am sure you want to see big things happen from it. Thanks for taking the time, and for pushing for even more from that time.

thanks- not sure what meeting you just attended but need to say I agree with you and would love to know more about forums and meetings we can set up to voice our concerns for our fellow PWD locally and internationally...we have a BIG voice when we use it together and we can make a difference- this is about life and death...thanks again!

What bar do you want to raise? AVG BG? StdDev? A1C? Minutes/ mile? Happiness? All of the above?

Well said, Kerri!

I don't like seeing all these company meeting posts from bloggers who are wined and dined but I am VERY glad to hear you saying that you want more than free dinner. You bloggers at these dinners are responsible for speaking for all of us and I am greatful to see that it's more than your own website and brand that you all care about.


Thank you for writing this, Keri. This is why I read your blog every day.

Oh, Kerri! So glad we've got folks like you always pushing for that next step. All these meetings are great, but it's so important to be thinking of the big picture. Go you.

Amen!

I'd love to see money go towards getting supplies into the hands of those without or who have no insurance.

So many amazing things can be done. I think the IrL meetups are awesome, but Sara nailed it, doesn't have to be pimped out rooms and dinner.

And same if not more effect would be had.

I was wondering where you went - no posts for a few days made me nervous!! LOL!

I have the same feelings when pharma brings lunch for my medical office to shill their latest (or oldest) drug. I feel guilty eating when there are many patients who can't even afford their medication co-pay, much less the full price of said pharma's drug. But I keep eating, mostly for the social aspect of eating with my colleagues, chatting about last weekend or today's patients. Pharma claims that money for marketing and money for drugs are completely separate, but that's phooey. I think being aware of these issues is the best I can do for now. I'm glad to see you're doing the same!

Amen and amen, Kerri. I like the idea of making this go further, of developing new ideas to help more PWDs. I am a part of a group that does peer education for PWDs, and when we get together it is absolutely fantastic. It's like a family reunion of people who just know. I wish everyone could have opportunities such as these to experience the d-love.

Gotta get this in before I fall asleep... Kerri, a very thoughtful post. I like what you said about companies having to manage their franchise. I get that.

But if these meetings (read: opportunities) can be used to help the bigger diabetes community as a whole, that's great.

I'm glad that I'm reading posts from people who see the world as bigger than a conference room. Thanks for your thoughts.

I'm grateful that you all are doing what you do, and making us all more real to the big companies.

FWIW, I feel the wine and food and fancy (I hope they're fancy) accommodations are key. If it were less deliciously awesome, not as many of you sharp tacks would be so inclined to attend.

Can you request they set up your rooms with special things like bowls of just the yellow Starbursts for lows, or cocaine for boredom/shyness?

Agreed. What are their corporate responsibility departments doing to help PWD? What are their corporate philanthropy departments doing? Guaranteed, there is a lot more they could be doing, but I bet some are already doing some. Whether they align with PWD desires is perhaps another story. T1 in other countries has dismal outcomes, and yet there are some wonderful advocates like yourself in some places. Also, it would be great to help PWD in the US who are under or uninsured get the supplies they need. Third world health conditions exist in many parts of our own country - think Native American reservations, parts of Appalachia... or even our neighbors who just don't have the insurance they need. It will be very interesting to see how coverage changes in terms of our demographic over the next couple of years with the new healthcare laws being phased in. Overall, I believe it will help more people get coverage. But in order to 'help' underinsured in the US through the corporate means, we will need to best understand the ramifications of the law and see how many it will help in our community.

Sorry for the rambling, I'm a health policy person :) and global health is my specialty! Anyway, this is all to say I really appreciate your post, for too long the DOC in the US has seemed way too disconnected from the rest of the world.

Dear Kerri,
I happened upon your site quite by accident a couple of weeks ago. I'd like to thank you from the bottom of my heart for doing what you do. As you said about yourself, I feel like I'm the only person I know with type 1 diabetes. And also, being a brittle diabetic, with little in the way of insurance to boot, I'm in desperate need of a CGM (Continuous Glucose Monitor). Without it I probably won't get to see my 2 young children grow up. But I digress, my point is that I understand and GREATLY appreciate your opinions that you stated above.
As I stated, I am new to your blog and don't yet know how you operate it, but I'm wondering how much of your readers lives go with you to these conventions. If you are taking OUR stories with you, then that is a FANTASTIC thing that should not trouble you in any way. And if not, then perhaps it is something to consider.
Thanks again.

Extremely well stated, as usual, Kerri. I wasn't able to make the Roche Summit this year, but from what I understand, you put into words what many were thinking.

I too would like to see a shift from simply *acknowledging* the community to actually helping the people in most need.

btw, here is our wrap-up of the Roche Social Media Summit that Kerri just came from:

http://www.diabetesmine.com/2012/08/roche-diabetes-summit-2012-its-the-climb.html#more-54653

Mike Hoskins did a great job of listing off all the things that HAVE come from these meetings so far.

I totally agree. Just a couple of weeks ago I was told by my doctor that I could test less. I won't say what I said but I did point out that my multiple testing was not about to stop. Kerri your words are so eloquent and true.

Thanks Kerri for putting these thoughts down into the blogosphere. I love reading your musings, and this one hit home for us, as the owners of a nonprofit entity that thrives on outreach dollars. It's so hard sometimes to believe in something so fully and not see that passion reciprocated from the people with the pursestrings.

Sean and I were just talking about you today (weird, I know), and we chatted about your perspective that you provide on SixUntilMe. When Sean said he noticed you don't seem to take a firm stand on controversial topics, I told him: She takes a stand... not necessarily for a certain company, or for a certain person, but for the entire diabetes community. Her stand is found in her personal experiences. Sean and I both agree that's such a necessary perspective!

I love reading what you write—please keep it up... for all of us little people trying to make it work!

Your post has renewed my desire to find a way to have a voice for diabetes from my own little world of blogging. I don't have a lot of readers, mostly just friends, but I do hear from others that my blog helps them. But that doesn't feel like enough - I want to have a wider impact, but am unsure how to go about it. I've signed up as a JDRF Advocate, and will see what that brings. I don't expect that my little blog will bring the attention of anyone like Animas or Dexcom, but nonetheless, I would love to have a voice or at least hear the news of what's happening in the world of diabetes research and technology. Most of all, the question keeps echoing in my mind - how can I make a difference to other PWD and those who are working to help us all?

You've written a wonderful post, and I'll only speak for myself, but I think it was something that definitely needed to be said in the DOC.

I was introduced to this community by your website a few years ago, and it really has brought a lot of joy, information, and stress relief to my life. But recently it seems that the DOC has grown kind of "small"; everyone I've followed by blog or twitter has been going to these meetings, and I started thinking "why is it always the same people and it seems like they're all enjoying mini-vacations? This money could be better spent."

To read your post and see that I'm not alone in my thoughts is great. Thank you!

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