“I’m Kerri Morrone Sparling and I’m not the voice of THE patient. I’m just the voice of A patient. And I’m sorry I have to present from behind the podium, but the tech guys couldn’t link me up with a lav mic because of the other diabetes devices I’m wearing. Ran out of room.”
And that is how I had to open my ePatient 2009 presentation, because if “awkward” isn’t my middle name yet, I should update it.
I was asked to present at the ePatient conference in Philadelphia earlier this week, talking about the “voice of the patient.” And honestly, I felt a little weird pretending to speak for all of us, so I had to make it clear that no one spoke for all of us. That’s why we blog about our illnesses – we speak for ourselves.
Photo courtesy of the ePatient Connections Flickr stream
I told them about how diabetes has been a part of my life longer than just about anything else, with me at every school dance, every college class, as I walked down the aisle, and now, as I’m building Bsparl. (I’m sorry – I still get a kick out of saying “BSparl.”) “Before I was an ‘e-patient,’ I was e-impatient. Where were the other people who were living with their diabetes? Was everyone just dying from it? I couldn’t be the only diabetic out there who was alive …”
We aren’t alone with our diabetes, and I shared that fact with the group at ePatient 2009. When I started, there was just a small handful of diabetes blogs – could count us on one hand. But now? Hundreds of sites are dedicated to diabetes management and lifestyle, and we are SO not alone. The diabetes community is vibrant and engaged and wants to step outside of the literal computer box and even meet up in person.
(And I showed them proof, by way of some of the photos I’ve taken of “diabetes in the wild.” See? We are real people!!)
“But while many of us have risen up to be considered ‘patient opinion leaders,’ we’re not your target market, or your consumers. We are people, and it’s important for companies to remember this. We’re not out there blogging because someone told us to, or for financial gain. We don’t blog because we HAVE to – we blog because it helps us heal. The emotional support gained from patient blogging and reading the blogs of patients is unparalleled.”
I think they got it, guys. Or at least they seemed to. And I was so damn proud to be part of the community at that moment, because we do break the mold of “consumers.” We’re people living with, or caring for people living with, diabetes. And that gives us an unbreakable bond.
Diane Bayer, my co-presenter, followed me with a beautiful and heartfelt presentation about why she blogs. She started by talking about the diagnosis of her son’s autism, and then told the story of her own recent diagnosis with MS. Her powerful words moved the crowd, and after she spoke, we took some questions from the audience.
One question that made me actually laugh was about the presence of pharma in social media. And since I’m a bit shorter-fused than normal lately (I’m blaming BSparl again on this one), that question just about put me over the edge.
“I’m a lifelong diabetic. Pharma’s job is to keep me alive. I use their drugs and their devices to stay healthy. THAT is their priority. I don’t care how many page views they have. If they want to have a Facebook page or something after they’ve accomplished that goal? Fine by me.”
It’s a strange dance, watching people who are living with different health conditions in the same room as marketing teams and pharma companies and people who might view us as “consumers.” But at the end of the day, I’m idealistic enough to hope that we’re coming together to find ways to improve health and wellness for us all. And if that’s not their goal when they sign up for these things, I’m hoping it’s at least on their list when they go to leave.
Voice of the Patient: ePatient 2009View more presentations from Kerri Sparling.
(Don’t roll your eyes. I’m pregnant, and I’m erring towards optimism as I prepare to bring a child into the world. I’ll be back to my regularly scheduled cynicism next May. 😉 )