PERSPECTIVES

Panel Participants:

Jenni Prokopy is Founder/Editrix of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to live incredibly in spite of illness. She tweets @ChronicBabe.

Kerri Morrone Sparling has been living with type 1 diabetes for over 23 years, diagnosed just before she started second grade. Kerri is the author and creator of www.SixUntilMe.com, one of the first and most widely-read diabetes patient blogs.

Mark King is a homosexual, HIV-positive recovering meth addict. Diagnosed in 1985, Mark has been an activist in the AIDS community since and is an influential video blogger that has appeared on ABC News, 48 Hours, CNN News and in the Wall Street Journal and New York Times.

Teri Robert is a patient advocate and writer. Teri’s career moved in this direction when her own migraine disease spun out of control in the late 1990′s. Faced with debilitating migraines and failed medical care, she hit the Internet for answers and has been an influential e-patient since.

Eileen Bailey is a freelance writer, specializing in ADHD, Anxiety and Learning Disabilities. She is the author of “The Complete Idiot’s Guide to Adult ADHD.” Eileen began her quest for information on ADHD fourteen years ago, when her son, then age 10, was diagnosed.

Patients are emerging as an empowered, influential voice in the healthcare industry. As patients continue to organize themselves into engaged communities, pharma brands have taken noticed and are interested in reaching out to them and partnering together to improve products and services. Five of the most influential patients that interact online answered three key questions every agency and pharma brand should be asking themselves.

Q: What do collaborations between patients and pharma look like?

Teri: I’m working with a Pharma company now on an awareness campaign. Along the way, they’ve asked me to introduce them to other ‘migrainers’, participate in their research and help develop events.

Jenni: I’ve had a similar experience working with Phizer. They approached me knowing that I have Fiberomyalgia. On a recent campaign, they trusted me to tell them what patients want to hear, what would be useful for them. I wrote the scripts, read the copy and starred in videos. Now, they continue to come to me for further guidance.

Teri: A lot of people have a chip on their shoulder regarding the Pharma companies, whether it’s over drug prices or side effects. I have a fear that being compensated for doing work will destroy my credibility with my fellow patients. Somehow, we need to change that perception with patients.

Q: How would you like Pharma companies to interact with patients

Kerri: Put a human face with the brand if you want to interact with me. Be face to face.

Mark: Familiarity with the people behind the brand would be nice.

Kerry: We are patients interacting as experts in being a patient. We need pharma companies to be interacting like experts of their products.

Illene: When you talk to patients, don’t just talk to us about medicine. Understand who we are as a whole person. Why do we need the pill? How does our condition impact our daily life?

Q: Could each of you speak to the size of your networks and how you’ve reached that milestone?

Jenni: I have an email list of nearly 3,000 people who receive an e-newsletter and about the same number of Twitter followers. I started hearing from Pharma when I started being interviewed by USA Today, Wall Street Journal and so on.

Kerri: You can talk about Twitter followers, site visits, etc., but my network grew as my doctors were sharing my stories with other patients like me. Then those people saw that I was talking about the same things that happen to them.

Mark: I have a subscriber base of about 3,000 people and I don’t really play on Twitter. My site receives about 20,000 – 30,000 visits per week.