Everyone wants to know what the patient community is thinking these days. The explosion of social media and patient advocacy has fueled the desire for Pharma, device companies, health organizations and insurers to seek out our perspective and input -- which is a wonderful development!

This is happening not just in diabetes, but across the broader spectrum of health conditions. But the Diabetes Online Community (DOC) does stand out, as it seems to be the only sphere in which patient advocates have joined forces and managed to engage closely with Pharma and industry watchers the way we do.

How's that? We are now entering Year Five in which the DOC has been hosted by Pharma at special diabetes social summits that bring patient advocates together into one place, to hear about their work and also -- more importantly -- to share what we're thinking and feeling as patients. Roche, Medtronic and Lilly have all held summits, and a few others are on the verge of jumping onto the summit bandwagon, it seems.

It's great that these companies are engaging with us and listening!Social Media Bandwagon

But the question arises: are we accomplishing any real change, or are these companies viewing this as just another marketing channel, in this case to trumpet how much they care what we think? Is the DOC just being schmoozed, or are we collectively changing things for the better?

Short answer: The latter. Even though it may sometimes seem like the summits are just for show, we think these meet-ups do serve good, and that we're making a difference for the broader D-Community and larger health condition spectrum. However, we'd still like to see more concrete action items result.

"When patients are more involved... everybody benefits. When they are not involved, it's too easy for Pharma and even the NIH to lose sight of what patients feel is a huge priority in their lives," says Dr. Jan Gurley, a practicing physician in the San Francisco area and blogger at DocGurley.com. (She's also been dealing with a serious health condition herself for the past year.)

"There's so much talk about non-compliance, but it's taken patient advocates to refocus the conversation on side effects and quality of life issues -- which are at least important as the numbers!" she says.

While advocacy groups in Autism, Arthritis, Breast Cancer and other Cancers, and HIV/AIDS have been quite influential, there are very few disease communities that have broken down the barriers to the kind of face-to-face interaction the DOC now has with Pharma and other decision-makers.

The three companies that have hosted summits in the past all say they're looking at plans for 2013, though only Lilly Diabetes has one on the books at this point. I'll be taking part in the second Lilly Diabetes Blogger Summit coming up April 29-30 at the company's Indianapolis headquarters.

When queried about their perspective on these events, here's what each of them had to say (in order of newest to longest-standing host):

Lilly Diabetes

Communications manager Julie Williams:

 

We were thrilled with the 2012 Lilly Diabetes Blogger Summit. Based on feedback we received from the bloggers, it was time well spent all around. For us, it was great to be able to get to know those who attended and listen to their ideas, insights and questions. In addition, it is truly inspirational for all of us to see Lilly Diabetes through their eyes -- it reinforces why we do what we do every day. We are planning to host another Blogger Summit in 2013 as well as come up with other meaningful ways of participating in the DOC moving forward.

 

LillySignOne of the areas we discussed at the 2012 Summit was our Lilly Diabetes/Disney collaboration and the popularity of the various books for families of children with type 1 diabetes. Currently, the books are available for free from many pediatric endocrinologists, but the prevailing suggestion among the bloggers was to make the books more widely available. We are working with Disney to do this, and plan to digitize the books and post them online sometime in 2013.

From our perspective, we see the significant growth of the DOC as exciting -- more people and more companies working together can lead to more ideas and sharing of information. We believe the inclusion of all voices -- those living with, supporting, treating or advocating for diabetes (regardless of type) — can be a powerful thing that can have a positive impact. Being in touch with the DOC has inspired us. Yet, as we look forward to expanding our participation, it's important for us and other companies to remember what the DOC is all about: connecting people living with diabetes with others living their same reality. We need to be ever mindful of this core mission and work together with people like you to ensure our engagement does not in any way impede that dialogue.

 

Our take:

The Lilly Summit is probably the forum that we saw the most direct action from in 2012, even if it was just making the Disney books more accessible to our community. One other change is that Lilly has finally started interacting in its social media use, creating a new Twitter account where the marketing team actually responds and interacts with people instead of just promoting content. Seems like a no-brainer, but we're really pleased they've made that move.

 

Medtronic Diabetes

Public relations director Amanda Sheldon:

 

We've found the now-annual Diabetes Advocates Forum very valuable. For many years, we've conducted extensive market Medtronic Diabetesresearch including 'voice of the customer research' around products and programs to best serve our customers. It has been invaluable to gain additional feedback from the Diabetes Online Community (DOC) around product design and development. Most importantly, three years ago, we were only just beginning to engage with the DOC via social media. We launched our corporate blog, The LOOP, just weeks before our first Forum. The feedback from the attendees of these events has been key in helping us create a social media program that provides real value to the diabetes community.

 

Today, we have more than 100,000 Facebook fans and 7,000 Twitter followers. These communities thrive because they're focused on: 1) enabling people with diabetes to support and inspire each other with stories of living well with diabetes and 2) sharing tips and information that Medtronic is uniquely qualified to discuss. This includes tips and tricks based on our most popular 24-hour helpline calls and behind-the-scenes information from our world-renowned leadership team.

We absolutely plan to host another Forum in 2013, but we have not yet set a date or determined where that will be held. The biggest challenge we face now is how to hear from the many new voices in the growing DOC while keeping the small-group feel of previous events that seems to foster such open and candid discussion.

 

Sheldon added that they're thinking about late summer timing.

Our take:

Yes, Medtronic has engaged with the community and we can't say enough good things about that! The chance to build relationships with passionate and knowledgeable Medtronic execs is much appreciated. But we can't really say there was any direct outcome of last year's summit. Aside from Medtronic allowing DOCers to trial test the new MySentry system and its pump and CGM, which we offered some criticism about, we haven't seen any direct product or policy change as a result of last year's mostly-promotional summit.

 

Roche DiagnosticsRoche Headquarters

 

We couldn't snag an official response from Roche about their plans for 2013 or what the company has specifically done as a result of last year's summit. Associate marketing manager Rob Muller tells us that they've not yet determined whether they'll be holding a summit later this year, even though they do plan to continue the DOC interaction.

 

Roche was the first to hold a diabetes blogger summit in 2009, and we give them kudos for taking the first step, and for inviting discussion on some controversial topics. However, last year's event was more about reflecting on the evolution of the DOC than any specific future-facing topics. Roche is still wondering whether the time for these summits has come and gone, or if they can be retooled in some way to accomplish more. One idea that came up last year was holding a Washington D.C. summit where patient advocates could engage with U.S. leaders, but whether that is practical, or would accomplish anything worthwhile remains to be seen.

 

Our take:

It's hard to argue that Roche set the stage for all these summits and DOC interaction. The first summit or two, as our first-ever opportunity to meet up in person, gave birth to the great patient-led programs and initiatives that we enjoy today, like Diabetes Advocates. Roche also held quarterly conference calls/webinars with attendees to keep the conversation going, and continually gather DOC input on what should be next. Although that question still hangs in the air...

 

Helping Patients By (X)

 

We've come a long way over the past five years and we continue to evolve as a community, both online and offline. These summits have served our community well in bringing some PWDs and D-Advocates together to brainstorm and fuel new ideas, but we still yearn to accomplish more in the real-world: ease the burden of diabetes, educate the disenfranchised, help lower costs, improve access to the best tools and care, etc., etc.

For the upcoming Lilly Summit, the company sent out an overview recently of what the day's agenda will entail: an update on new Lilly Diabetes/Disney publications and e-books; a preview of the 2013 Friends for Life Conference; an in-depth look at how insulin is created; and an interactive session with the company's diabetes leadership team.

It all sounds interesting... BUT, some of us planning to attend agree that our hope for this year's Lilly Summit is that every presenter would close with a phrase along these lines: "... this can be used to help people with diabetes by (blank)," and that blank should be filled in with something clear and actionable.

We've discussed how Lilly could use its influence to help strengthen peer-to-peer support networks online and offline, and work to get more healthcare professionals to share the value of the DOC with their patients. Whether that happens is totally TBD...

But the fact that through this summit, the patient community now has an open dialogue with this Pharma giant -- the organization that first started large-scale production of insulin, and essentially saved all of our lives -- is still huge. At least we know we have their ear.

"Tremendous Impact"

As mentioned, patient advocates with different health conditions see what the Diabetes Community is doing as a great model for others to follow. One fellow advocate, who's active in the health care social media (#hcsm) twittersphere that includes patients and physicians from throughout the bigger healthcare universe, agrees, pointing out that the most important aspect of any patient summit is for there to be specific goals, and not to "just do it to do it." No arguments there.

"It's sometimes hard to stay at the table when you feel like nothing groundbreaking is emerging... but it's also hard for patients to realize the power they do have," says physician/patient Doc Gurley. "It's too easy for these organizations to drift away from patient priorities. Patient advocacy groups can have tremendous impact on drug development, pricing, and access to medications, for example."

So what do you think, fellow D-Peeps? How do you think these summits could best be used to accomplish real and lasting good?

 
Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

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.