2011 Roche – Growing Potential, Still Vague

Manny pretending Scott's bald head is a crystal ball
Manny trying to read the future in Scott's crystal ball

As hard as he tried, Manny Hernandez could not see what was in the coming days of the 2011 Roche Social Media Summit.

I bet he got pretty close though.  Friends, fun, relationships, the greater good, and the sense that we can influence change.

I personally felt that this, our third summit, was the best yet.   Nurturing relationships is part of what makes these in-person meetings important.  But as a group, it seems that we were better prepared to handle the excitement of seeing each other in person again, and didn’t let that get in the way of  a productive summit.

For the most part, the group was all about figuring out how to make change happen.  I could feel it in the room, and I loved it.  We are starting to trust Roche Diabetes more, thanks to the work Todd and Rob put in through the year, and how they respect us at the summits.   I felt this year was even less about Roche Diabetes, and more about them (Roche) being able to facilitate good things.  Do you see why that is important?  They understand that the way to gain our trust and respect is to show us that they are about the greater good – not just increasing Roche’s bottom line.

And by working towards helping more people with diabetes, they are growing their bottom line.  And that is Ok!  We need companies to make money from diabetes or else we will be abandoned.   Unfortunately, there will always be more help needed than is available, but taking steps to do what they can is important in my opinion.

Advocacy is Education

We are all advocates.  All of us – not just the small sampling of people at the summit.  If you live with diabetes, you are an advocate.  By living your life you are telling a strong story.

So much of advocacy is education.  Us educating people without diabetes.  Organizations educating us about their missions and goals.  All of us educating decision-makers about why diabetes is not Ok.

For the past two summits, Roche has gotten us an audience with some important organizations.  Last year was the ADA and the AADE.  This year was JDRF and the IDF (International Diabetes Federation).  I wrote briefly about my thoughts with them already, and I am thankful to have had the opportunity to be educated.

I was frustrated by our group’s behavior when Isabella Platon, Head of Communication with the IDF, presented.  The group pretty much jumped down her throat for not having better relationships with us.  I call bullshit on that attitude, and ask that WE realize that they are very busy finding ways to keep people from dying because they can’t get their insulin.

We have responsibilities to help them too – advocacy is not a one-way street.  As people who have found a small channel to tell our stories, we need to step up and pro-actively help organizations that need it.  Shame on us for being so full of ourselves that we have ignored kids dying from lack of insulin.  Shame on us.

Still Vague

While I felt the cohesiveness of the group coming together, I also felt a desire to channel the energy towards something great that we weren’t quite able to catch.  We spent a short amount of time brainstorming, and we got close to a lot of great ideas.  But that was about it.   Just close.

I think we might have been trying to force magic, when that’s just not the way it works.  The world has huge, possibly unrealistic, expectations coming from these summits, and I think we all feel a lot of pressure to deliver.  But deliver what exactly?  Proof that we’re not bought and paid for?

I’d like to hear from people more about what they expect to come from these meetings?

I think the relationships we are building are very powerful examples of great things coming from them.  And let’s not forget, not everything that is a result of these relationships is tangible.  What about empowering someone to live their life with diabetes through a story we tell, or experience we share?  That’s something.  At least I hope it is!

Paperwork

Roche Diabetes paid for my travel, meals, and accommodations for the summit.  Roche did not pay for the couple hundred bucks in overdraft fees resulting from the hotel’s hold on my bank card (free travel is never free folks – this stuff costs me money I don’t have).  Roche did not ask any of us to write about anything, even though they knew we would (and we’re totally happy to do so).  Roche did not put any conditions on what we write about or don’t write about.  Todd & Robb, Adam & Jill – thank you all!  Everything was well organized.  Lisa!  We missed you!  Also – big thanks for making DSMA and DSMA Live hugely successful and historic!

 

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Scott K. Johnson

Patient voice, speaker, writer, advocate. Living life with diabetes and telling my story. Patient Success Manager, USA for mySugr (All opinions expressed are my own and do not necessarily represent the position of my employer).

Diagnosed in April of 1980, I recognize the incredible mental struggle of living with diabetes. Read more…