Just a few short years ago, no one could have envisioned the Diabetes Online Community would become what it is today. And be moving in the collaborative direction it’s going…
Seriously, some likely would have laughed at the idea while shaking their heads in disbelief!
It used to be “Us versus Them,” in terms of the relationship between Pharma and people with diabetes (PWDs). There was little interaction; we didn’t know them and they didn’t know us.
But that’s changed dramatically, and continues to evolve. We’ve come a long way as a community, sharing our stories and 
advocacy more broadly than we ever would have thought possible. But there’s a long way to go still, and we seem to be at an interesting crossroads just now.
In what might be dubbed “the beginning” — a decade or so after the Internet yielded some initial forums, list-servs and message boards — a handful of PWDs took the next step by starting their own blogs to share their stories and connect with others. Reflecting on how they began, many have a similar message: To feel less alone, to get beyond the horror stories about diabetes, and to find others who “get it” and can talk outside the medical lingo.
Yep, those were the “early years,” providing the inspiration for many of us to get into this.
That’s why Amy started the ‘Mine, and why I started too – first finding and lurking in that small online community in late 2005 before turning my personal blog into one focused on diabetes. And eventually combining it with my journalism career to where we are now.
Soon, the DOC began to explode. The number of blogs skyrocketed, then Twitter brought a more real-time voice to the interaction, more communities materialized, and meetups brought the online relationships into the “real world.”
Then Pharma entered the picture, holding summits and forums for the DOC – first Roche in 2009, then Medtronic in 2011 and Lilly in 2012. Others are exploring similar events, too.
Just a sampling of what’s come from these summits: the idea for the grassroots Diabetes Advocates group, where now more than 100 PWDs have joined together to advocate and reach others; blood glucose meter commercials that reflect “not perfect” results; and some individuals being able to use certain products to report on and review them for the greater D-Community.
The crossroads we face now, IMHO, is that Pharma is getting more integrally involved in our “grassroots” efforts. These companies are working more closely than ever with D-bloggers, and not just with product pitches. More of the DOC voices are becoming frequent guest-bloggers or subjects of interviews on Pharma-led sites. Some bloggers are even working for those companies from time to time, helping cover events and spread the diabetes word for the broader community.
Take Sanofi-Aventis U.S. as an example. They’ve jumped into the DOC during the past year and a half, not only engaging on Facebook and Twitter but starting a blog called Discuss Diabetes in January 2011, that’s featured lots of us. They’ve taken other steps, too – adding an online diabetes-encyclopedia dubbed Diapetapedia that curiously resembles Bernard Farrell’s Diaboogle Search Engine, with elements of the Six Until Me-created D-Terms of Endearment (even using her “Diabetes doesn’t define me” line); and jumping onto the bandwagon with its own diabetes design challenge that looks nearly identical to the one our own Amy trailblazed back in 2007. Most recently in May, they’ve even created a new online community site called The Diabetes Experience (The DX), which has a wealth of news and articles as well as a feed of D-blogs and even posts from our fellow D-bloggers who are compensated for writing them. The DX site now features a Q&A section that closely resembles our very own Ask D’Mine column too.
And just recently, 
Medtronic unveiled its newest social media venture by creating a Facebook “timeline” page welcoming PWDs to share their own personal stories – for free!
This is just the way of the world now, as pharma is doing more to engage with consumers and patients.
We’re seeing many of these kinds of efforts, that seem to “co-opt” many of the grassroots efforts we patients began online. Granted, some of these ideas we’ve had were borrowed from elsewhere to begin with, such as the You Can Do This Project being a D-focused twist on the It Gets Better initiative; and DSMA (Diabetes Social Media Advocacy being inspired by the Health Care Social Media (#hcsm) twitter-chat; and even TuDiabetes in many ways being a “Facebook on insulin.”
These are all brilliant initiatives created by our friends and great advocates, and no one questions their value.
But is there really a difference between what “we PWDs” are doing versus what happens when Pharma tries to do the same? Is it still authentic, and just putting these ideas “on steroids”? Or should we be skeptical about these commercial attempts to recreate our efforts?
I reached out to Sanofi’s communications director Laura Kolodjeski to specifically ask that question.
“As part of our commitment to the DOC, we created these resources to connect, provide accurate information, education, and encourage dialogue. We look to, and work closely with, members of the DOC for feedback on how we can add value, and strive to provide solutions,” she wrote in an email response. Very corporate-speak.
Laura says they’re “having fun”… but only because the DOC has been “so accepting and willing to trust that we are interested in listening, learning and helping.”
She adds: “In our experience so far, engagement is largely dependent upon each individual community member. Since initiating our online engagement, we have built meaningful relationships with some and there are many others we have yet to ‘meet.’ Given that our reasons for engaging are grounded in determining how to better serve the needs of the community, we look to community members to help us understand how they would (or would not) like to engage.”
I guess ALL of these platforms and initiatives and voices are important. We’re all sharing and building on what everyone else is doing, making it better and hopefully strengthening the D-Community’s voice.
So, where do we go from here?
That’s been a topic of conversation lately in a number of diabetes circles, with several bloggers writing eloquent posts on the theme. Our columnist Wil Dubois wrote about it on his personal blog and the ever-savvy Scott Strumello did the same, and both TuDiabetes and Diabetes Daily have reached out to their members for broader feedback in light of the upcoming Roche blogger summit later this summer.
In a recent DSMA Live interview, Roche Diabetes associate marketing manager Rob Muller told host Scott Johnson that this is still only the beginning of patient empowerment via online efforts. “It’s all about opening up a dialogue and making the ‘business of diabetes’ personal,” he said.
Created by Mike Durbin of My Diabetic Heart
We hope Rob is right about the notion that companies are “coordinating voices, strengthening the message and continuing to develop personal relationships, (which is) for the greater good.”
Can we all co-exist, or does this community at some point become too big or full of too much of the same?
Like before, we hope the answer here is that growth has been a positive, and we’re able to continue building off each other and sharing our collective voices to make a difference. Even as some of our story-telling work comes together in collaboration, we like to think we’re all strengthening our community and benefiting those who might not even know they’re part of it yet.
As Rob said: “What other time in history has there been a chance to have this kind of dialogue? The power and platform the DOC has built for itself is incredible, and we’re awfully excited to be a part of that.”
Indeed.
This is the story of the DOC. Our story, as PWDs. We’re still writing it together, and we at the ‘Mine can’t wait to see what the next chapter is.
The thing we need to watch out for is the siloing of PWD by each distinct community, whether that community be dLife, TuD, DD, Diabetic Rockstar, Juvenation, the ADA, or any of the corporate-owned “communities”. Once we restrict activity to one community, all of the others lose out. And adding value to one community often means offering exclusive content, which means restricting participant activity to that community alone.
Additionally, unless there are SM content managers who actively syndicate information and conversations between communities, the communities lose out by missing large parts of the potential conversation.
That said, the more separate communities — or the more content — the more time any individual PWD, SMM, or other individual must spend in collecting, reading, and/or curating that content. It can overwhelm the average PWD (of which most of us are not)
Tmana,
I am not sure people focused on a single community, reading a single blog (or only a handful among the hundreds of d-blogs out there), or solely tweeting about their life with diabetes means that they are missing out on anything. The DOC experience has evolved into different things for different people.
The goal, IMHO, is not to be in on all places the DOC has to offer, but to make the most of your time on it, ultimately living a healthier and more fulfilling life with diabetes, in spite of the ups and downs that this chronic diseases comes with.
My two cents.
While I’m grateful for the PWD community’s input, I wonder if pharma is also incorporating those parents who care for children with diabetes who choose products and manage their children’s type 1 diabetes. I read here and often about the PWD and obviously what a wonderful community to retain first hand knowledge. The parents of CWD might be an untapped gold mine for pharma and for improving the lives of all people with type 1 also imho.
fromtheheart-
I am one of the parents of CWD’s that is often invited to pharma events and I often receive outreach from companies about new products and initiatives. I recently wrote a piece for Disney Family.com (which is sponsored by Lilly Diabetes). And my book Kids First, Diabetes Second is in stores this summer. I think that parents of children with diabetes who are active in the online community ARE being included in outreach and they are trying to learn from our experiences as well as find ways to market to us in meaningful ways (for example, Medtronic’s new Lenny Build-a-Bear dolls and Lilly’s line of books for kids and tweens which are co-branded with Disney). While parents of CWD’s are often included in outreach and events by pharma, they have largely been in the minority. But our presence is increasing for sure. The attendee list for Roche’s upcoming event includes the addition of several more parents. And trust me, us parents speak our minds and give suggestions as to how the care of our children can be improved!
-Leighann
Leigham,
You mention that Disney Family.com is “sponsored by Lilly Diabetes.” Can you point me to the sponsorship notice on that site? I don’t see anything about it. Or do you mean that Lilly Diabetes is just serving up banner ads on the site?
John
Lilly Diabetes sponsors the site, they don’t just purchase advertising. If you click on any of the individual posts (family.go.com/parenting/pkg-type-1-diabetes) you will see in the upper right corner the red Lilly logo and it says “Sponsored by Lilly Diabetes.” It’s my understanding that Disney and Lilly develop the content together.
OK, Lilly sponsors ONLY the “Type I Diabetes” section under “Parenting,” not the entire site — most of which is chuck full of sugary food ads and recipes that are not healthy for normal children, let alone CWD! Luckily, these ads are not served up alongside the sponsored content.
It concerns me that pharmaceutical companies are copying what PWD are doing online and even specifically using (pirating?) “Diabetes doesn’t define me” line from Six Until Me. Have they paid for this? If so, has Six Until Me revealed this? The transparency issue is what concerns me when pharma companies work with online PWD leaders.
Have you made Kerri Sparling aware of this, John?
Kerri Sparling is aware.
And I don’t have anything to disclose; I wasn’t involved in the Sanofi diabetes dictionary thing at all.
Hey Mike,
Thanks again for the opportunity to participate in this conversation. It really is amazing to see how the DOC has grown.
As I shared in our original correspondence, Sanofi US Diabetes is appreciative of the fact that we’ve been included in the online conversation. Our goal is to listen closely to the diabetes community and identify ways to contribute to and complement the conversation in a meaningful manner. We also feel that by sharing the stories of DOC members we learn more each day about living life with diabetes and how we may bring value beyond our products alone. As always, we’re open to feedback and look forward to hearing input from the community.
For anyone who would like to contact us, please feel free to reach out via email at usdiabetes@sanofi.us.
Best, Laura K.
Thanks for this upbeat and informative story of the DOC history. I find the DOC to be a valuable and reassuring tool that I use almost daily. I only wish that more of us will discover this amazing resource. In the real world, I rarely meet a Type 1 who is even aware of its existence.
I honestly do not personally know a single T1 diabetic in my church, at work or in any of the music groups I play in and I live in East Kirkland (East Seattle area). My only place to interact with and commiserate with T1s IS the DOC.
It’s been wonderful to find a place where people know what it is to live with and struggle to control this disease. Thanks to everyone at DiabetesMine, Alexis at I Run On Insulin and everyone who takes the time to ask and answer questions that give insight into diabetes and life.
Your timing of this post is great. I am actually putting together a few words about social media for a talk I have coming up. I will be sharing some very general information (real 50,00 ft level) about the DOC with mostly primary care providers with an interest in diabetes. I would like to refer them to your blog as a nice summary of where we are and where things may be headed.
Keep up the great work and support for PWD.
Unfortunately, the DOC has grown into a big popularity contest that makes me feel entirely sad. Gone are the days when everyone’s input was valued and respected. What remains is a “circle the wagons” group of spotlight seekers who look down at the rest of us with an arrogant attitude.
Amiga,
One thing that happens when communities grow is they start mimicking more and more the world at large. This means there will be people who play in the sandbox, people who are helpful, mindful and respectful, and people who are simply focused on their own agenda and don’t care about others much…
I just don’t believe the entire DOC is a big popularity contest. I have met some of the most extraordinary people ever through the DOC, you being one of them!
Take care.
Great post, Mike! I always know it’s Friday when my favorite online newsletter appears. I compare the interactive relationship of PWDs and Pharma with my own bipolar disorder where Pharma is constantly getting in trouble and embarrassing all of us w/bipolar or depression as they hide important details of studies, promote drugs off-label, all in the name of greed. Their unchecked, unethical behavior costs many people their lives!
I got insulin-dependent diabetes when I got a kidney tplant last year and the antirejection meds caused diabetes. Am adapting slowly and DiabetesMine has made the journey so much easier and I know I am not alone.
forgot to mention the reason i got a kidney tplant was b/c i took the drug lithium for bipolar d/o for 16 yrs and it ruined my kidneys. i know a dozen people like me – in their 50s and 60s – who have either had tplants or are on dialysis.
You’ve written another great post.
(FYI, I’ve been way behind on blogging and only recently discovered your old blog is no more and you’ve moved on. Good for you!)
This post hits on somethings I’ve been thinking of recently and plan to blog on.
I think the DOC is great. Actually a huge blessing for people like me….after my son was diagnosed. When I have questions…need encouragement…the DOC is there.
BUT ….I wish we would step out of the box. Try to educate people who don’t know about Type 1.
I think that’s why everyone knows about the color pink. They moved outside the cancer community to reach people who don’t know about cancer.
The DOC is a blessing to many (myself included!) but does anyone outside of the DOC know about it? Isn’t that important? I think we need to do a better job of reaching the general public.
I arrived late – took me over 5 years after my first child’s diagnosis to find the DOC. I have found EVERYONE to be welcoming, kind, supportive and inclusive. Prior to finding the DOC on twitter I would spend hours a week searching for the latest and greatest technology, studies, trials, etc. I often became discouraged and likely missed out or learned late about new tech or better ways to manage diabetes for my kids. Having pharma involved doesn’t bother me – although like I said Im new to the DOC and might not understand the risks of involving both the patients and the companies that want to sell us stuff participating in free flowing conversations. Maybe ignorance is bliss – I just love that each day DOCers share articles, technology, ideas and of course support. now I don’t feel like Im always bringing up the rear – I feel like I am gaining ground and my kids, my family and I am better for it. The joy I experience in general aspects of my life have increased greatly since I found a community of people that understand “dd high – inclusion found – new site -corrected – rechk in 2 hrs – who’s up?” There is power in that. Thanks Mike!
Exactly, Christina! I’m one of those parents who understands that cryptic sentence and is likely also up in the middle of the night.
Just added you to my feed reader
-Leighann
Mike –
Just want to say THANKS for a moving and beautifully written piece recapping the DOC’s growth and growing pains. You all are building such a rich and wonderful resource. As a diabetes educator who appreciates and promotes the value of SUPPORT, I encourage the DOC to look for ways to build among the community of people with diabetes. I’d love to see MUCH MORE outreach to more people with type 1, caregivers, people with type 2, prediabetes, etc. Unfortunately there are millions of people who would benefit from a support network or two!
Thanks again! Keep up the great work!
Hope
Thanks for ALL you do!
Hope