Over the last few years, there have been several company-sponsored events where people involved in diabetes social media are invited and participate in a variety of discussions. I’ve been having some trouble wrapping my head about the respective expectations at these events, and how to capture my thoughts in a productive way.
I love, love seeing my fellow PWD in the same room, bringing our online connections offline. I am really grateful that these companies afford some of us the opportunity to sit in the same room and actually talk with one another, or have dinner with one another, or just be in one another’s presence in “real life.” Needing a test strip and being able to borrow one from across a table is an amazing experience, especially when I spent a lot of time prior to 2005 feeling like I was the only diabetic I knew.
My expectations at these kinds of gatherings is that these companies are trying to get to know the diabetes online community, and that they also wanted to tap us for ideas, marketing opportunities, and organic PR. While I do believe that many people in these companies care about us as people, and vice versa, with members of the social media space getting to know the real people behind the companies, I know there is a definitive marketing spin to everything that happens at these meetings. It’s almost impossible for there not to be, because their job is to manage their franchise.
I think the people in these rooms are lucky. Those who are voicing some perspectives from the diabetes community are lucky because they have the opportunity to see one another in person, and can hopefully represent the viewpoints of people with diabetes with respect, integrity, and honesty. The people working in these companies are lucky because they get to hear real concerns and praise from their actual target market, and they get an in-person feel for a snapshot of this community. All that collective "luck" goes a long way in furthering the patient's voice being heard by Big Pharma, hopefully contributing to change for the good on all levels.
But the tides are turning. There has been some real progress, in terms of things like patient assistance programs, etc. that have come as a direct result of these meetings. And I know that I am personally inspired when I see a company’s culture and compassion, first hand, as a patient with diabetes. But if companies have the budget for meetings like these, I believe we should be using these meetings to benefit the community as a whole. If we have travel, lodging, and meals as part of these discussions, I know we can see that money go into community outreach, too. Or instead. Diabetes camps, or college scholarships for people with diabetes, or assistance programs for the under-and uninsured would benefit from the same attention that some social media representatives are receiving. If these pharma/blogger meetings are intended to improve the diabetes community, true advocacy and assistance would go a long, long way in that. What do we, as a community, want to see happen? If we don't contribute to the agenda, we are just along for the ride.
I don’t know if companies will continue to host these kinds of meetings, but if they do, I hope the outcomes are tangible. I have appreciated the opportunity to see behind the curtain at some companies, but I am hopeful for a shift. A change. Outcomes can be as simple as connecting two PWD who live in the same town or as complex as trying to supply insulin to third world countries, but they need to benefit more than the people sitting in the room.
These meetings need to be less about pulling back the curtain and more about raising the bar, setting expectations for outcomes that actually make a difference in the lives of people with diabetes.