When I heard that Lilly Diabetes was holding its first-ever Diabetes Blogger Summit, my initial thought was: "It's about flippin' time."

I'm an active patient advocate and blogger who's lived in Indianapolis for close to a decade and worked for about six years in downtown Indy, where Lilly is based, but haven't once been able to get a clear read on what the company is doing to engage the diabetes patient community, either online or offline. I have tried to communicate with them, but have either received no response or got the impression that they simply weren't interested in hearing my patient perspective. Since 2009, other companies have led the way in engaging with the diabetes community.

But Lilly hasn't even gotten its feet wet. Not until recently.

So I was pleased to see they were finally willing to open that door to bring about a dozen members of the Diabetes Online Community to Indianapolis for a summit at their headquarters just north of downtown. This summit marked the first time that Lilly has done anything like this in any of its therapeutic areas. Bloggers who were able to attend (besides me) were: Scott Benner, Leighann Calentine, Kelly Close, Bennet Dunlap, Scott Johnson, Kelly Kunik, Tony Rose, Cherise Shockley, George Simmons, Lorraine Sisto, Kerri Sparling, and Kim Vlasnik.

News nuggets from around the diabetes community

American Diabetes Association Names New CEO
Non-profit leader Kevin L. Hagan named as new chief exec of national diabetes org after six-month search.
FDA Approves New Basal Insulin
Sanofi's Troujeo has 'flatter profile' of action that helps to avoid lows.
Daytona Win for Racecar Driver with Diabetes!
Type 1 driver Ryan Reed wins first NASCAR series race at Daytona on Feb. 21.

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My impressions about this long-overdue engagement: impressive and positive, and I do think it was a great start, but there's a long way for Lilly to go in truly engaging with the diabetes patient community on so many fronts.

Changes Afoot

You might say that Lilly has been stuck in the past for a long time. It's a 136-year-old Pharma giant with a rich history of medical successes. Vice president of global diversity Patty Martin told our group the company's medications have always "spoken for themselves and led the way." But now, she says, Lilly is pushing to recognize changes when it comes to "empowered patients" and offer more personalized care and information.

"Putting a face to the company's history and future began about two years ago," she said.

We learned that about 8,000 people work on the main campus of Lilly, and about 200 work for the Lilly Diabetes unit that Enrique Conterno leads as president. We got to meet him and a roster of other high-ranking executives and company decision-makers, and I imagine the faces we saw and discussions we had were reflective of a new wave of energy within Lilly about how best to engage the diabetes community.

Clearly, in the past Lilly didn't grasp how it could and should interact with and listen to the DOC. At this summit, I felt we were finally being heard, and that our group offered some good feedback on how Lilly can move forward in its efforts to be more "patient-focused" with personalized care and services. The relationship has begun, and with a company that has such a significant foundation in diabetes, that is HUGE.

Making Disney Books (Available)

A fair amount of time was spent talking about several books Lilly has released focusing on tweens with diabetes.

First, they reviewed feedback on Coco (the monkey with diabetes) and the Disney collaboration that Lilly announced in July 2011 at the Friends for Life conference. Part of that effort was the Once Upon a Time Contest created last summer. We learned they'll be announcing the winners of that in early to mid-June.

Lilly shared stories about how adults and grandparents living with diabetes have used the book, Coco and Goofy's Goofy Day, as a teaching tool for family members, and how a young girl newly diagnosed with type 1 was able to reassure her own concerned parents after reading it. The feedback has been very positive, the Lilly marketing people said, and it made a diabetes diagnosis about running, jumping and playing rather than about needles, insulin and carbs. Kids have been able to teach other kids about diabetes, and feel more "normal."

The book might be great, but one thing that stood out as a shortcoming about this whole initiative was availability. Those in the room pointed out that people can't get their hands on this book outside of doctor's offices. We were told this was by design because Lilly is trying to direct PWDs to their healthcare providers. "Our strategy has been directing people to their endo, to let them be the hero," Lilly's consumer marketing director Matt Caffrey told us. What?!

The DOC shared ideas about making the book accessible to public and school libraries, school nurses, low-income community health clinics, and conferences put on by diabetes organizations.

People may very well love this book, but it's of little use if they can't get their hands on it. I think Lilly got the message loud and clear, and we'll see if they make those changes any time soon.

A few other new books, which we were given copies of, include ESPN: Power Forward, the story of a 7th grade boy just diagnosed with type 1 who worries about being able to play basketball and how to share his news with friends and teammates; ESPN: Up for the Challenge, similar to the other ESPN book but through the eyes of a newly-diagnosed 8th grade girl on the soccer team; and Hannah Montana: Uptight (Oliver's All Right), hitting at the popular Disney show and how the two girls learn about their good friend Oliver who's been keeping his type 1 diabetes a secret.

The Lilly people heading this collaboration say their next move will be entering the teen market. We shared thoughts on how we'd like to see some adult-oriented books, which could be inspirational resources for those concerned about living with diabetes into adulthood or even teaching tools for adults with diabetes who want to teach their own kids about diabetes.

I think the books are great tools for families because they deal with the emotional and mental struggles of being a kid with diabetes, rather than the clinical or physical aspects. We all want to be "normal," and we worry about being designated as different. These books hit on that element very powerfully, in stories that kids can understand. I wish they would have been around when I was growing up.

Lilly showed us one more Disney book, too: Dishing It Up Disney Style, a cookbook aimed at families living with type 1 that offers a total of 30 Disney character-themed recipes divided up equally between breakfast, lunch and dinner, not only "diabetes-friendly" foods, but also gluten-free recipes.

That's why it amazes me that these books aren't more widely available outside doctors' offices — they are dealing with non-clinical aspects of life with diabetes!

Hello, Social Media

Tarra Ryker, senior director of global business communications, told us that Lilly's "journey" with social media has really only just begun. The company's been active on twitter and in the blogosphere through its LillyPad (@LillyPad) since 2010, but without much actual interaction. They've recently undergone some changes such as a new look and allowing comments to appear immediately instead of being delayed several days or banned altogether. We emphasized that listening is important, but that two-way interaction is key to social media (!), and that it can make or break the relationship with our community.

As I sat in the room listening to some of the corporate big-wigs talk about social media, I wondered why the people who actually write LillyPad weren't in the room. I mentioned this, and it seemed to come as a surprise, as if the idea hadn't even been contemplated before... which I found somewhat perplexing since they were hyping LillyPad so much.

Ryker said the company is trying to develop a "more cohesive look and strategy overall" for its combined social media across business units, and is doing some market research to study why diabetes is the top health topic in the social media world, dramatically higher than oncology or Alzheimer's, for example. We suggested it's because of the chronic nature of diabetes and how it's always with us, and how peer support is just as important — if not more, at least psychologically — than standard medical care and doctor's guidance.

Ryker pointed out something true for all Pharma companies: regulatory concerns about what they can and cannot say about products and directly to patients make social media a complex issue.  Thane Wettig, VP of global marketing, said this during our discussion about social media use: "We know we need to listen, and have to push the boundary on what the FDA says you can do and can't do."

What Lilly Could Do...

We emphasized that Lilly can do a better job of highlighting things it is already doing. For example, many of us had no clue there was a specific telephone hotline for people with questions about their insulin (1-800-LillyRx). Or that in 2010, Lilly Diabetes  started a patient assistance program with Walmart that provided $170 million in free/reduced price insulin last year, and a new awareness pilot program with Walgreens here in the Indy area to provide education about hypoglycemia, something that could expand to other locations down the road.

By letting us know about those types of things or even blogging and tweeting about them, our community will see the direct impact of what the company is doing.

George offered a suggestion that Lilly do a better job promoting its own campus and facilities, particularly the historical museum and replica of the original Col. Eli Lilly lab that we had the chance to tour. Lilly stopped doing public tours there in 2001, but putting a virtual tour online or blogging about these items could offer a valuable look behind the corporate curtain.

We also suggested telling the "real" personal stories, by writing about those with diabetes who work at Lilly.

 

Dr. Dana Hardin,  a pediatric endo who started at Lilly about a year ago, told us all about how the company recently decided to invest in diabetes alert dog training through the Indiana Canine Assistant Network (ICAN). Though dogs' noses vary (just like our diabetes may vary), they can often sense a hypo better than a CGM — within 15 minutes of it happening, rather than the devices that frequently don't alert us until we're actually dropping dangerously. It can cost $30,000 to train an alert dog, but the program assigns the dogs out for $12,000. She talked about the training, how the dogs first bump you under the arm and then can go find someone else or even dial 911 and fetch an orange juice from the refrigerator!! It's not clear what the dogs actually sense, but  it may be a volatile organic acid in a PWD's body. Some data on this canine hypo-sensing capability will be presented at the upcoming ADA Scientific Sessions.

This is a perfect example of the type of program we in the DOC would like to know about, and can help publicize, offering Lilly a window into what people think and also a channel to reach those who might need these dogs.

Grateful & Hopeful

As always, one of the best parts of these events is seeing friends from the diabetes online community. One of the organizers repeatedly noted that the atmosphere was like a "reunion" among old friends. That really about sums it up! Yup, alongside the promotional aspects of these forums, the companies know that one of the greatest benefits for us is simply the chance to spend time together.

Overall, being there touched my heart and I feel very grateful - for the sentimental reason that without Lilly's insulin-making role back in the early '20s, my own D-mom and I wouldn't have been around. So getting a glimpse of this company behind the scenes was very significant to me personally, as theirs is the only insulin I've ever used.

Sometimes, you can't gauge the real impact of these events until an undetermined point down the road — maybe even a year later, when the company brings PWDs back to share what has happened since the last get-together. Whatever the timetable might be, I'm encouraged to see Lilly open its doors to a more two-way dialogue with the broader diabetes community. Hopefully, we'll all see — sooner rather than later — some positive results that will help all of us be more aware of how we're all tied together when it comes to diabetes.

 

{DISCLOSURE: Lilly offered all attendees compensation for travel funds, meals, and a few "bonus" items such as books and Lilly merchandise. With my house being only 20 minutes from the Lilly headquarters, I didn't need any travel or transportation assistance. But even if I had, it wouldn't change my views or ability to write openly and honestly about this event.}

 
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This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.