“Friending Pharma” at SXSW: Tell Us Your Thoughts, Please

This past weekend, I had the privilege of speaking at the Interactive portion of the South by Southwest conference (SXSW) in Austin, TX. Launched in the mid-80s as a music festival, SXSW has grown in the last decade or so to become one of the largest festivals in the world, including all manner of social media and mobile technology. A couple of years ago, a group pulled together an unconference portion called SXSH, to focus specifically on interactive tools for health, because the traditional SXSW conference didn’t include any health topics.

Fast forward to 2012, and not only is there a Health track, but there were thirty (yes, 30!) different sessions this year covering a variety of health-related topics, from health games and tools for healthy living, to sexual health, to interactions between patients and pharmaceutical companies. And that’s where I came in.

I was invited to speak on a panel called Friending Pharma, which focused on the relationship between pharmaceutical companies and patients. The impetus for the panel derived from PR pro Brian Reid, a former colleague of mine, who spotted a story about Marilyn Mann, a mother who had begun a Facebook community about her daughter’s rare disease, Familial Hypercholesterolemia (FH), and was contacted by a rep at a PR company. Marilyn eventually learned that this rep was working on a disease-awareness media outreach campaign on behalf of Genzyme, a company developing a drug for FH.

Upon learning this connection, Marilyn immediately responded that she was not interested in working with Genzyme, saying: “Genzyme’s purpose is to sell their products. My purpose is to help patients. Those two goals are not the same…. My main concern is that the news coverage could be slanted to serve the interest of the drug company.”

Marilyn’s situation is not unique. We vocal patients are now facing an increasing amount of messaging and interaction requests from pharmaceutical companies in social media. From Twitter profiles to Facebook fan pages to corporate blogs, more and more pharmaceutical companies are bucking the traditional idea that social media is “too scary” and they’re getting involved. The interaction is still somewhat limited in scope, due to FDA regulations, but it’s no longer considered completely off limits.

Now that it’s becoming acceptable to include social media in virtually every corporate communication strategy, the question for Pharma has shifted from “Can we participate in social media?” to “How do we participate in social media?”

In short, Pharma is looking to “friend” us patients, in one way or another — either by roping us into their Facebook pages or YouTube channels, by corporate-run disease blogs, or direct interaction on Twitter. Is this what we want and need?

Over the last few years, our thoughts on this question have evolved. In my panel on Sunday, I shared with the audience that the patients in these communities are building relationships with each other, and that reps from pharmaceutical company need to think of it in these terms: We don’t want to be thought of as dollar signs and profit margins. We want to be thought of the way we think about ourselves — as people first.

When we receive pitches from Pharma, it’s not that we hate hearing from them or even find the pitches irritating (although they can be). Rather, we think about it in terms of how we’re being treated. We want to communicate with people, not with a logo or auto-generated newsfeed. We want to work with individuals who want to know us as people.

Hey Pharma, think about it this way: A relationship with a patient — blogger or not — is going to be a very fragile thing. It’s easy to feel taken advantage of when you are a patient. It’s easy to feel like you are a nothing but bottom line and feel exploited, led on by promises of super-amazing new technology or drugs. We know this stuff isn’t perfect (not to mention unaffordable and therefore out of reach for many of us), and it’s patronizing to act otherwise.

If you want to know why the Roche Diabetes Social Media Summit and the Medtronic Diabetes Advocacy Forum were successful (both of which are occurring again this year), it’s because they focus on building relationships. We aren’t being led into a room for a sales pitch, and in fact, products are rarely mentioned for most of these meetings. We weren’t being presented with a list of reasons why the company is so amazing. And we definitely weren’t asked or required to write anything about what we saw and heard. They knew we would, but that’s different than writing something in exchange for compensation.

We appreciate that at these meetings, or when we interact with the PR teams online, we interact with them as people. We see that they are trying to learn about the real hard truths behind our lives, rather than assuming we’re talking about adverse events and off-label use a thousand times a day. We’ve been able to cut through the superficial clutter of why one product is better than another, and really get into the heart of the issues, which are the struggles that we as people with diabetes face on a daily basis.

That, to me, is why interaction with Pharma is so important.

But not everyone may agree, as illustrated by Marilyn’s story. Amy and I, along with a handful of other diabetes bloggers and advocates, regularly spend time with reps in Pharma and PR agencies because we believe it’s important for us as patients to know what they’re up to, and to offer them the chance to learn about us. We go to these meetings armed with our own ideas of what the community needs and how Pharma can help. Of course we recognize that not everyone has the opportunity to attend these events and express their own opinions, so Amy and I have always worked hard to represent the community the best we can.

We’re two weeks out from the next Medtronic Forum, and a few months away from the fourth annual Roche Diabetes Social Media Summit. We’d like to take this opportunity to hear from you about YOUR thoughts on how Pharma interacts with the DOC. This way, we can hopefully give them the most up-to-date and comprehensive feedback from our peers.

Please take a minute to fill out the poll below, to help us best understand where our community stands on this issue. And feel free to leave a comment to elaborate on your thoughts!