Lilly Diabetes (finally) Participates the diabetes patient community

When I heard that Lilly Diabetes was holding its first-ever Diabetes Blogger Summit, my first thought was “It’s about flippin’ time.”

I’m an active patient advocate and blogger who is lived in Indianapolis for close to a decade and worked for about six years at downtown Indy, where Lilly is established, but have not been able to find a clear read on what the provider is doing to participate the diabetes patient community, either online or offline. I got the impression that they were not interested in hearing my standpoint or have attempted to convey with them, but have got no response. Since 2009 businesses have led the way.

However, Lilly has gotten its feet wet. Not until recently.

So I was happy to see they were finally willing to open that doorway to cause a dozen members of the Diabetes Online Community into 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 some of its 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.

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

Changes Afoot

You may say that Lilly has been stuck in the past for quite a very long time. It is a Pharma giant with a history of health care successes. Vice president of global diversity Patty Martin told our team that the organization’s medications have consistently “spoken to themselves and led the way.” But now, she says, Lilly is pushing to comprehend changes when it comes to “empowered patients” and provide more personalized care and data.

“Putting a face to the organization’s history and future started about two years back,” she said.

We learned that about 8,000 people work on the main campus of Lilly, and about 200 work for its Lilly Diabetes unit which Enrique Conterno leads as president. We must meet him along with a roster of other high-ranking executives and business decision-makers, and I imagine that the faces we watched and discussions we had were reflective of a fresh wave of energy in Lilly about how best to engage the diabetes community.

Clearly, in the past Lilly didn’t grasp it could and ought to listen to the DOC and interact with. At this summit, I believed we were finally being heard, and that our team offered some fantastic feedback on how Lilly can move forward in its efforts to become “patient-focused” with personalized care and services. The relationship has started, and with a business which has such a significant basis in diabetes, that is HUGE.

Making Disney Books (Accessible)

A good amount of time has been spent talking about books Lilly has published focusing on tweens with diabetes.

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

Lilly shared stories about how grandparents and adults living with diabetes also have used the book, Coco and Goofy’s Goofy Day, as a teaching instrument for household members, and the way the young girl newly diagnosed with type 1 was able to reassure her own anxious parents after studying it. The feedback has been very favorable, the Lilly marketing people stated, and it created a diabetes diagnosis about running, jumping and playing instead of about insulin, needles and carbs. Kids have been able to educate other kids about diabetes, and feel more “normal.”

The book may be great, but something which stood out as a shortcoming concerning this whole initiative was availability. Those in the room pointed out that individuals can not get their hands on this book outside physician’s offices. We had been told this was by design because Lilly is currently trying to direct PWDs to their healthcare providers. “Our approach has been directing people to their own endo, to let them become the protagonist,” Lilly’s customer marketing manager Matt Caffrey informed us. What?!

The DOC shared thoughts about making the book accessible to public and school libraries, college nurses, low-income neighborhood health practices, and seminars put on by diabetes associations.

Individuals might very well love this book, but it’s of little use if they can not get their hands on it. I believe Lilly got the message loud and clear, and we’ll see if they make these changes any time soon.

A few other new books, which we had been given copies of, includeESPN: Power Forward, the story of a 7th grade boy just diagnosed with type 1 that worries about being able to play basketball and also the best way to share his information with friends and teammates; ESPN: Up to the Challenge, very similar to another 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 series and the way the 2 women find out in their great friend Oliver who has been keeping his type 1 diabetes a secret.

The Lilly people heading this cooperation say their next move will be going into the adolescent market. We shared thoughts on how we’d love to find some adult-oriented books, which might be inspirational resources for those worried about living with diabetes into adulthood or even teaching tools for adults with diabetes who want to educate their own kids about diabetes.

I believe that the books are great tools for families because they manage the psychological and mental struggles of being a kid with diabetes, instead of the physical or clinical aspects. We all would like to be “ordinary,” and we worry about being designated as different. These books hit on that element in stories that kids can understand. I wish they would have been about when I was growing up.

Lilly showed us more Disney book, also: , a cookbook geared toward families living with type 1 which offers a total of 30 Disney character-themed recipes split equally between breakfast, lunch and dinner, and not just “diabetes-friendly” foods, but additionally fermented recipes.

That is why it amazes me that these books are not more widely available out physicians’ offices — they are currently currently dealing with facets of life!

Hello, Social Media

Tarra Ryker, senior manager of global business communications, told us that Lilly’s “journey” with social media has really only just started. The organization’s been busy on Twitter and at the blogosphere via its LillyPad (@LillyPad) because 2010, but without much actual interaction. They have recently undergone some changes such as a new look and enabling comments to appear immediately instead of being postponed several days or prohibited altogether. We highlighted that listening is vital, but two-way interaction is essential to social networking (!) , and it may make or break the relationship with our neighborhood.

As I sat in the room listening to a number of the corporate big-wigs talk about social networking, I wondered why the men and women who write LillyPad were not within the room. I mentioned this, and it appeared to come as a surprise, as if the thought had not even been contemplated before… which I found slightly perplexing because they had been hyping LillyPad so much.

Ryker said the company is attempting to create a “more cohesive look and strategy overall” because of its combined social networking across business units, and so is doing some market research to study why diabetes would be the top health issue in the social networking world, radically higher than oncology or Alzheimer’s, for instance. We proposed it’s because of the chronic nature of diabetes and the way it’s always with us, and how peer support is just as important — if not more, at least emotionally  — than standard medical care and physician’s guidance.

Ryker pointed out something true for all Pharma companies: regulatory concerns about what they can and cannot say about products and services directly to individuals create social media a intricate matter.   Thane Wettig, VP of global marketing, stated this through our conversation about social networking use: “We all know we must listen, and need to push the border on what the FDA says you can do and can not do.”

What Lilly Can Do…

We highlighted that Lilly can do a better job of highlighting things it is already doing. For instance, many of us had no clue that there was a specific telephone hotline for individuals with questions about their insulin (1-800-LillyRx). Or that at 2010, Lilly Diabetes   started a patient assistance program with Walmart that provided $170 million at 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 which could expand to other locations in the future.

By letting us know about these types of things or even blogging and tweeting about these, our neighborhood will see the direct impact of what the provider is doing.

George provided a proposal that Lilly do a much better job promoting its campus and amenities, especially the historical museum and replica of their original Col. Eli Lilly laboratory we had the chance to tour. Lilly ceased doing public tours there in 2001, but placing a virtual tour online or blogging about these items could provide a valuable look behind the corporate curtain.

We also proposed telling the “real” private reports, by writing about those with diabetes working at Lilly.

Dr. Dana Hardin,  a pediatric endo who started at Lilly about one year ago, told us all about the way in which the company recently made a decision to spend in diabetes alert dog training during the Indiana Canine Assistant Network (ICAN). Though dogs’ noses change ( like our diabetes might change), they could often sense a hypo better than a CGM — within 15 minutes of it happening, instead of the devices that frequently don’t alert us until we’re actually falling dangerously. It may cost $30,000 to train an alert dog, but the program assigns the dogs outside for $12,000. She spoke about the training, the way the dogs bump you under the arm and can go find someone else or even bring an orange juice and dial 911 It might be a volatile acid within a PWD’s entire body, although it’s not clear what the dogs sense. Some information on this canine hypo-sensing capability will be shown at the upcoming ADA Scientific Sessions.

This is the ideal example of the kind of program we at the DOC would love to learn about, and will help publicize, offering Lilly a window into what people believe and a channel to reach individuals who may need these dogs.

Grateful & Hopeful

As always, one of the greatest parts of these events is visiting buddies from the diabetes online community. Among the organizers repeatedly noted that the atmosphere was like a “reunion” among older friends. That really about sums it up! Yup, alongside the promotional elements of these forums, the businesses understand that one of the greatest benefits for us is only the chance to spend some time together.

In general, being there touched my heart and I’m very grateful – to the reason that without Lilly’s insulin-making role back in the early ’20s, my D-mom and that I wouldn’t have been about. So getting a glimpse of this business behind the scenes has been very important to me personally, as theirs is the only insulin I’ve ever employed.

From time to time, you can not gauge the actual impact of these events until an undetermined point down the street — maybe even a year after, once the business brings PWDs back to share what’s happened since the previous get-together. No matter the timetable may be, I’m invited to see Lilly open its doors to a more two-way dialogue with the wider diabetes community. Hopefully, we will all see — sooner rather than later — some favorable results which will help us be aware of how we’re all tied together when it comes to diabetes.

DISCLOSURE: Lilly provided all attendees reimbursement for travel funds, dishes, and also a few “bonus” items such as books and Lilly merchandise. Together with my home being just 20 minutes from the Lilly headquarters, I didn’t need any travel or transportation assistance. But even though I had, it wouldn’t change my views or ability to write openly and honestly about this occasion.

Disclaimer: Content created by the Diabetes Mine team. For additional information click here.

Disclaimer

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

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