Many of us patient advocates who make the rounds at e-patient and health 2.0 conferences hear an awful lot of talk about "what the patient wants" and how Pharma and device companies should reach out to our communities online.  Meanwhile, they've been slow to embrace Social Media, and given the controversy over FDA regulations for this, who knows what's happening internally at these companies as they struggle to form a viable strategy for getting involved?

One company at the forefront has been Johnson & Johnson, which has done much more than most in the Social Media arena in the past few years.  Their insulin pump division, Animas, has been particularly visible. Animas launched an "Online Pump Triathlon Relay" earlier this year and just recently awarded the grand prize donation to the Diabetes Research Foundation in Florida. We chatted last week with Chris Campbell, Product Director for US Patient Marketing, who shared what Animas is doing in the online community, and why and how they are doing it:

What motivated Animas to begin patient outreach in the diabetes community?

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Animas has always put the patient at the center of everything we do.  Therefore, the decision to begin exploring ways in which we could learn from, understand and potentially give back to the online community was a simple one for us.  We also recognized that as a manufacturer this was not our expertise — it's the community's.  Therefore, we felt we had much to learn from engaging with the online diabetes community.

How did you and the Animas team decide what was most appropriate tactics and tools for social media and digital marketing? Where did you start?

We spent almost a year simply listening, observing and understanding where the most relevant conversations and engaged people were.  We learned quite a bit from that, were able to develop some wonderful relationships with individuals in the community and ultimately took some first small steps at participating.

We started in a few places — our own community section on our website, focused on exposing those new to the online diabetes community to the most relevant conversations; we built a very basic YouTube presence called Insulivin' to spotlight some of our own videos, as well as some of our favorites from other people; we collaborated with several other Johnson & Johnson companies to launch the HealthSimple Facebook community; and lastly experimented with our Diabeticons —  inspired by Reality Check and Six Until Me — two terrific sites where people with diabetes use some of the terms that inspired us to create the Diabeticons.

Wasn't Animas concerned about risk, given that most pharmaceutical companies are very cautious when it comes to interacting in social media? What precautions did you take?

Absolutely.  As I wrote on the J&J BTW blog (corporate comm blog) it's a pretty daunting task taking your first step into this world, especially as a device manufacturer.  Will people trust our intentions?  Will we be accepted?  Will people see value in what we're offering?  These were not easy questions to answer.

The easiest way I can answer the question is that we put overarching guiding principles in place for everything we did — we would be transparent, we would be genuine and we would be well-intended.  Sure, we've taken baby steps here and there, and still have a ways to go to be a fully engaged partner with the online world; however, we will always stick to these principles in all that we do.

What do you see as the major accomplishments of Animas's digital marketing over the last year? And what do you think needs improvement?

We were very proud of the work we did with the 2010 Online Pump Triathlon Relay.  This was really our first leap into providing a platform for user-generated content.

The goals of this race were simple: to provide a way for pumpers to show the freedom that insulin pump therapy has provided them — on water, wheels and feet, to get the community together to work towards a common goal — finishing the race, and most importantly to give back in the form of a donation to diabetes non-profit, which was chosen by the pumpers that participated.

In the end, we were very happy to donate $10,000 to the Diabetes Research Institute and have Tom Karlya, Vice President of DRI's National Office/Florida Region visit Animas to receive the donation.

Can you explain how Animas handles "adverse events" or "off-label use," both of which are closely monitored by the FDA?

We have cautiously stayed away, for now, from allowing free-flowing comments on the platforms on which we have participated.  I'd like to see us do that in the future, as I believe that truly opens up the two way dialogue.  Regarding our internal processes, Johnson & Johnson and Animas take adverse event handling very seriously and follow an extremely thorough process for any and all events or off-label usage we're made aware of.

Is there anything you've wanted to do that you haven't been able to do yet?

Yes.  We would love the opportunity to embed some of our clinical experts into specific communities — not to sell or promote our products — but to offer guidance and answer any questions that people may have about our products.  As I mentioned, I'd also love to see us get to the point where we're facilitating much more free flowing discussion about our products and services.

Of course, with this level of participation comes a significantly higher level of moderation to ensure we're following up on any adverse or off-label events — a challenge that all device and pharma companies are facing.

As creatively as we can, we'll continue to look for ways that we, as a manufacturer, can offer value to the community.  Should we be hosting discussion forums on our site?  Maybe not, unless there's value to our pumpers to do so.  Generally, I believe this belongs in the hands of the community.

Some patients worry that any Pharma involvement in the online D-community may dilute or hinder the conversation. How do you respond to those criticisms?

I agree, to a certain extent.  I view it no differently than showing up to a dinner party and just talking about yourself for 20 minutes.  Ultimately, no one is going to listen or care.  The difference, I believe, comes back to our guiding principles — be transparent, be genuine and well-intended.  If we do this, I believe we can offer true value back to the community.

Last year, one patient criticized Roche Diabetes for "buying" the influence of diabetes bloggers.  How do you maintain a professional working relationship without undermining independent editorial direction?

I wouldn't comment on any other company's practices, but personally, I admire anyone who encourages transparent dialogue.  There's no rule book for the social web.  Bloggers will make their own decisions and are responsible for the consequences. Any company engaging with them must understand that.

One non-diabetes blogger even criticized the idea of "paid patients" — do you see that as a real trend in pharmaceutical marketing?

Again, it's about transparency. With full disclosure, I believe any relationship can work.  The community is smart enough to notice when a blogger's and/or a company's intentions are genuine or not.

How do you see yourself in the diabetes community? As a marketer? A fellow patient advocate? An educator?

If we do it right, my hope is all the above.

Thank you for sharing, Chris. We'll certainly be intrigued to see how Animas and other Pharma and device companies move forward in health social media. What do we really want from you all? We're still figuring that out, too...

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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.