First Follow Up – 2010 Roche Social Media Summit

Conference CallOn July 30th we had the first of what is to be regular, scheduled, quarterly follow-up conference calls with the group at Roche.

There were two scheduled conference calls that day, in the hopes that everyone could attend one of them.  I attended both calls, because I’m really interested in what everyone has to say around this “thing” we’re doing.  I was pleased with the turnout, and the frank discussion during the calls.

Post-Summit Direction

One of the common themes in both calls was expanding the reach to more people with diabetes.  George said, and I love this,  “getting diagnosed may suck, but there’s an entire online community that can help you make sense of it and support you every day.”

The bottom line?  How do we all give back what we have received from the online community, and how do we help more people.  We all want Roche to leverage their position in the industry to help us help more people.  I love that.

We talked a little bit about some sort of “Social Media 101” eBook or pamphlet that can be distributed and help get more people involved.  Something to help people feel more comfortable with interacting online, introducing them to the many “channels” that are available, and providing some “starting points”.

There was some talk of a centralized “blog roll”, but I have some concerns with this.  The phrase “Social Media” means so much more than just “blogs”, and all of us bloggers would do well to remember all of the other ways people are interacting online.  By talking “blogs” and “blog rolls” and “blog this” and “blog that”, we’re excluding a lot of valuable people, even if it is just unintentional language.

Summit Survey
About sixty percent of the attendees had completed the survey as of July 30th.  I was pretty disappointed to hear that just over half of us completed the survey.  How do we expect anything to come from these summits if we don’t provide ALL the feedback we have?  C’mon guys!  Let’s help Roche help us to help everyone!  Sixty percent?  That is pitiful.  I am calling you out here and now.  If you attended the summit and have not completed the survey you are not pulling your weight.

Todd (from Roche) compiled the survey results into a “Top Ten” list of themes:

10) More information about Roche products.  Don’t want an infomercial but more about what Roche is working on.
9) A clearer explanation of what Roche gets out of the Summit
8) Make sure future conferences are tied to one of the major conferences (ADA, CWD, etc.) and/or centrally located (Chicago, Indianapolis).
7) More transparency about who’s been invited and why they were selected.
6) More communication between Type 1s and Type 2s
5) More opportunities to give feedback regarding non-social media efforts.
4) More opportunities for collaboration with ADA/AADE.  Appreciate the first step, but want to work with them directly.
3) Looking for direct follow-up from ADA/AADE regarding summit.  Please make sure that this wasn’t a “one and done”
2) Don’t rush the schedule.  Better to fully explore one idea than rush through many.
1) More focus on social media at future summits

Looking at the survey results, I feel pretty satisfied.  You can see from the results that everyone who completed the survey (60% ?!) have good, honest, service-oriented intentions about where this goes from here.

World Diabetes Day

Roche has committed to leading a global effort around World Diabetes Day.  Roche has also committed to helping Manny and the Diabetes Hands Foundation put together an online video to promote diabetes awareness and World Diabetes Day.  Part of Roche’s involvement will include donating a relatively large number of test strips, tied to how successful this video is in the online community.  The details are still being worked out, but the better this video does, the more strips get  donated to people in need.

Next Steps with ADA/AADE

ADA: Director of Communications, Lois Witkop, who you may have seen on Amy’s Blog, is particularly interested in hearing from those of us with type 1 diabetes about how the ADA can be more responsive to our needs.  We are told that we will be hearing from her directly soon, but have also been given her e-mail address to help facilitate conversation.

AADE: Since the summit, AADE is working to add our information to their blog roll and also want to know if we would like to receive their advocacy e-mails.

Both: Roche has talked to both organizations about attending future calls when they would like to discuss a particular issue with us or they have information to share.  They could separately reach out to us, but value having an existing session to tap in to.  We are to look for them to attend future calls when it makes sense.

My take on the next steps?  I feel that we may be starting to earn the trust of Lois Witkop, and hopefully through her, also more of the organization.  I was pretty disappointed with the AADE steps, but that part of the actual meeting was a disaster too.  Maybe I was hoping for some show of desire to open communication more so we can find ways to help each other help more people with diabetes.

My General Conclusions
I feel good.  I feel that Roche is listening to what we are saying, and I feel that they are genuinely interested in taking steps towards a closer relationship between them and all of you.  Social media is such a scary place for companies, and I give Roche a lot of credit for being brave enough to engage with us.

I was very clear with them that there is huge potential for all of this to backfire if they don’t deliver some real tangible “good faith” substance through all of this.  They have read my posts, and all of your comments, and are aware of the tenuous situation.  They don’t seem to blame us for being skeptical, which I take as a good sign.

I Need Your Help!
I need to hear from you.  I need to know how YOU feel about all of this.  I don’t claim to speak for anybody but myself.  I feel that I have good intentions behind me, but I need to know what YOU want Roche to know.  They are reading this.  Here is a chance to have your voice heard.  Where do you want “this” to go?

Comment anonymously if it makes you more comfortable (you don’t have to fill in e-mail/URL info on the comment form).  Speak your mind, please.

If you say nothing, I hear nothing, Roche hears nothing.  If you say nothing now, but complain about something later, I will call you on it.  That’s only fair, right?

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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…