The Unwilling Customer.
Earlier this spring, I was invited to present at Digital Pharma 2009, a conference dedicated to the social media pursuits of pharmaceutical marketers and public relations professionals. I was asked to speak at the conference from the patient’s perspective on pharmaceutical marketing – and not as an actual marketer, which I also am, but for consumer lifestyle clients. This was before the Roche Diabetes Social Media Summit, so when I agreed, I didn’t have much of an idea of what actually went into talking about social media to Big Pharma. But let’s just say, it’s a whole lot harder than it looks.
My talk, which I gave last Tuesday afternoon, was one of the last in a series of conversations that took place with almost all pharmaceutical marketers. I was, in fact, the only patient in the room (well, the only Patient, as I’m sure many of the marketers have anxiously sat in a doctor’s office before). It was my job to represent all of Patienthood. No pressure, right?
I began my talk by talking about the diabetes blogosphere and why we’re here. Our goals for forming a community out of an otherwise isolating experience. I told them that if it wasn’t for the fact they knew I had diabetes, they probably wouldn’t actually know I had it. I have no visible signs of being sick, other than this little contraption on my pant pocket, which most of them probably thought was a MP3 player or cell phone (how on earth that could ever be confused with a iPod is beyond me, but that’s what I’ve been told….).
I also told them about the Roche Diabetes Social Media Summit. I told them that we appreciated the time that Roche took to get to know us and interact with us, reinforcing the conference’s overarching them at the SOCIAL MEDIA IS SCARY and that all we patients are going to do is talk about adverse events and get Big Pharma into a lot of trouble with the FDA (maybe we do talk about adverse events, but, uh, so what? That excuse was lost on me, I’m afraid).
I told them that we liked that they listened to us. That we were able to share our grievances and felt like maybe someone was going to do something about it, something that is infrequent in the world of healthcare. I shared feedback from some of the bloggers in the diablogosphere, like Kerri and LeeAnn. I included some shoutouts to TuDiabetes and Diabetes Daily because I think these communities are VITAL to the pharmaceutical companies and their employees understanding how their products affect our lives.
I gave them a few recommendations but the one I want to tell you, my readers, about is this: “Understand that the patient is an unwilling customer.”
This is the one that got tweeted the most, and one that I really wanted to drive home. Throughout the entire conference, the pharmaceutical companies kept referring to patients as “customers.” As if I was buying a new Macbook or a VW Jetta. But this isn’t. Buying a new laptop or car might be considered a necessity to some, but it’s not something that keeps you ALIVE. Understand that patients do not WANT anything Big Pharma is selling. We’re not buying this because we want to. I choose Apple and Starbucks and Target because I want what they have. I don’t WANT Lifescan’s products, but I choose them because they are the best alternative for my care.
I’ve always thought that we are often unwilling dropped in different buckets when it came to talking about healthcare. Today, Dana Lewis, while at ePatients2009 in Philadelphia, tweeted, “apparently we’re not people, we’re just patients. harumph. thus my insistence on “people with diabetes’. PERSON FIRST.” I thought this was especially fitting after my experience at Digital Pharma where patients were automatically consumers, which we are, but not in the typical way marketers think of consumers. Most consumers, at least in the lifestyle industry of technology and fashion, are choosing a product out of desire for the end result of what the product provides. There are only a few products people probably don’t ever want to purchase. Tax software, for instance. Or vacuums. Well, maybe there are people out there who LOVE their vacuums…
This got me thinking about all the different way in which other people will perceive someone with an illness based on their own station in life. Marketers think of us as consumers, even though we may not. Doctors will think of us simply as patients, those whom should respond in favor towards medical advice, even though we may not. Our friends and family may think of us as being “sick” or “weak,” even though we certain are not.
At the end of the conference, I was even more determined to show the Real Face of Patients. And do you know what that is? People. Patients are people. Yeah, I know, what a novel concept, right? But patients, the whole lot of us (and there are a lot of us) are almost treated as second-class citizens in this day and age, with the healthcare reform raging in Congress and Big Pharma trying to figure out what the hell to do with us here on the Internet. We’re causing chaos! Imagine that.
But patients are not rabble-rousers and they’re not tricksters. They are not trying to make anyone’s life miserable. Patients are your mom and your dad. They are your sister-in-law and your uncle. They are your next door neighbor and the girl across the street and your 10th grade history teacher. Everyone has been a patient at some point, and as this country’s health declines, more and more of us will know people with chronic or terminal illnesses. I now have had Parkinson’s, multiple sclerosis, type 2 diabetes, bladder cancer and two cases of breast cancer in my family. No one asked for these diseases. No one asked for their time and money to be spent on something this awful. We’re just trying to make this all just a little easier on ourselves.
I don’t WANT any of these products, my dear Big Pharma, but I NEED them. We need them. Don’t take that for granted and don’t assume any goodwill from us simply because you hold the key to keeping me from biting the dust tomorrow. Yes, we’re very skeptical as to why you need any more of our attention than you already have. But if you really want our attention, you better come up with something good.