ePatient2009: Voice of the Patient.
"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.
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.
(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. ;) )
Comments
I don't want this comment to sound overly gushing or anything, but I'm really glad that you are "representing us". Even if you are only speaking for yourself out there, first impressions are everything and if you are the first patient blogger these people encounter then the future is bright for all of us.
Thanks for fighting the good fight
Posted by: Chris | October 28, 2009 11:44 AM
It was great having you and your compadres from the "people" side at the conference, Kerri. Industry and patients/people/consumers need to be together more often in these formats - each needs to hear and understand the others' voice, and especially to see that we'll ALL people in this endeavor.
Posted by: Steve Woodruff | October 28, 2009 11:45 AM
That was very similar to what I said at Digital Pharma, so it's good we're all on message! I definitely felt the pressure to be The Patient, and I said that I was just one person and these were my experiences, but also what I had learned from interacting with others. It was definitely tough though!
Posted by: Allison Blass | October 28, 2009 11:51 AM
Kerri, you were an inspiring speaker. My cousin Ashley was diagnosed with type 1 diabetes at the age of six; now she's a lovely, vibrant young woman preparing to go to college (her goal is become a dietitian, a desire born from her own experiences and a wish to help others).
I remember Ashley, as a child, searching in vain online for a recipe for a "Britney Spears birthday cake with sugar-free frosting." Today, seeing bloggers such as you and sites like Juvenation.org, I wish those resources had been around for her then when she was first diagnosed. But it's great to know there are places now where she can share her experiences with others who truly understand.
Posted by: Christiane Truelove | October 28, 2009 12:16 PM
Sweet, I made it into your slideshow! :D
Thanks for representing for the rest of us. I feel like we're in good hands when you're speaking on behalf of diabetes patient bloggers.
Posted by: Hannah | October 28, 2009 12:51 PM
Kerri,
Thank you for speaking up for us patient bloggers AND patient opinion leaders who could not be there. You represent us well. BSparl will be proud someday.
Lisa
Posted by: Lisa Emrich | October 28, 2009 01:12 PM
If someone gets to speak for us, I'm glad it was you. :)
Posted by: Cara | October 28, 2009 01:32 PM
You and Diane both did an amazing job - so proud!
Posted by: Alli | October 28, 2009 01:52 PM
Thanks for showing that being a living with an illness is about much more than just being a consumer.
Well done!
Anne Marie
Posted by: Anne Marie Cunningham | October 28, 2009 01:58 PM
I like the "e-impatient" note. Thanks for being there and showing them the face of the Diabetes OC!
Posted by: Kathy | October 28, 2009 02:02 PM
No eye rolling...just excitement that the voice of the diabetic community is being heard. Thank you for all you do.
Posted by: Meri | October 28, 2009 02:04 PM
Maybe I am pregnant because that seriously choked me up.
Especially seeing one of my favorite pictures on your slideshow.
thank you Kerri for speaking from the heart and letting them know that we are people first, not consumers. LYLB
Posted by: SuperG | October 28, 2009 02:40 PM
Very powerful post...thank you for sharing and I agree with everyone above...I am blessed you are the one who represented us...you make us all very proud!
I'm building my 'diabetes in the wild' portfolio too :) I wonder what animals I will collect next!
Posted by: Jaimie | October 28, 2009 03:11 PM
Hi Kerri!
This is Diane. I just want to personally and publicly thank you. You helped me tremendously just by being such a strong and compassionate prescence.
Thank you for asking if I was doing all right when we were sitting at the speaker's table. I was just praying that my MS wouldn't kick in send me stumbling across the floor! Fortunately I didn't have any symptoms at all. I was just super nervous.
I am so happy you went first.
Your presentation was fantastic and I was thinking..."shoot...How am I gonna follow that?"
It was a little odd talking to such a diverse crowd and pharma folks...but I do think they got our message. I really do think we were heard.
I had a very touching moment when a member of the audience who worked for a pharma company approached me and told me that my talk affected them in a profound way...not for business reasons but because they had also had a child with autism. We then shared pics of our kids and connected on a very human level. So that right there made it all worthwhile.
Sorry for going on so...but thank you for your kindness and just for being you. It was really an honor to speak with you and I hope I have further opportunities to do so in the future.
Posted by: Merely Me | October 28, 2009 03:59 PM
Thank you, Kerri. You sure are needed!
Posted by: Casey | October 28, 2009 04:48 PM
Kerri-
I agree with everything everyone said! You are our voice:) work that podium girl! BSparl is going to be so proud of you!
Posted by: Cherise | October 28, 2009 10:05 PM
great opportunity, kerri! i'm speaking at a diabetes fair next monday and again in two weeks. i'm slightly nervous; however, i'm so honored that i get to be a voice for the d-community. yeah!!!!
Posted by: rachel | October 30, 2009 06:05 PM