A blog exploring pharmaceutical relationship marketing, emarketing and innovation with a focus on rare disorders.
The convergence of rare disease, digital communications, and pharmaceutical marketing communications

It’s Not About You, It’s About Patients

Posted by | 10:15am on Friday, October 1, 2010
patient rights arts advocate Regina Holliday

we need collaborative patients to engage in a participatory medical experience 

“Stop selling, start supporting,” Lisa Emrich told pharma attendees at ePatient Connections. “Do good for others and patients will notice, that’s the best marketing of all.”

Hearing strong statements like this directly from patients is what makes this event special. Last year, I was introduced to the inspirational ePatient Dave and this time, I met more empowered patients. I agree with Kerri Sparling who made the point that as an industry we’ve got to find a way to provide the travel and honoraria support these patients require in order to participate in these conferences. Note that when I use the word “patients” I’m using it in the broader context to include caregivers and family members.

The conference was full of interesting data and presentations, but I’m going to focus on the patients.

Truth is Stronger than Fiction
Osteopath, Dr. Tim Kingsbury, talked about his struggle with Dupuytren’s Contracture, which caused his ring and pinkie fingers to curl down into his palms. After just one injection of a new treatment from Auxilium: “30 years of having an issue with my right hand just disappeared,” said Dr. Kingsbury. “I was crying, my wife was crying – the doctor started crying because the treatment had worked!” Dr. Kingsbury shared how he is now able to hold his wife’s hand once again. Auxilium is using patient ambassadors like Dr. Kingsbury to spread awareness of this rare disease and the treatment.

My Husband Wasn’t Just a Patient, He Was a PERSON
Last year, ePatient Dave’s story made me tear up. This year, it was the courageous Regina Holliday. After the death of her husband, Fred Holliday II, she became a patient rights arts advocate. Her mural titled “73 cents” can be viewed at 5001 Connecticut Avenue in Washington, DC, and it depicts the Holliday family’s nightmare journey through the medical system during Fred’s cancer care.

Holliday stated that the worst thing during her husband’s illness was not being able to have access to his records. “Through patient empowerment and access to data, we can truly change everything,” urged Holliday. “Without access you are denied the complete view.”

“Compliance is doing what you were told to do,” Holliday said. “We don’t want compliant patients, we need collaborative patients to engage in a participatory medical experience.”

Holliday was painting throughout the conference, and her work was then auctioned off for charity and purchased by Red Nucleus.

Educating Others
Manny Hernandez turned his advocacy for diabetes awareness into a fascinating Facebook game, HealthSeeker, which encourages healthy behaviors. Jeanne Barnett from cysticfibrosis.com used The Wizard of Oz yellow brick road analogy and likened the diagnosis of cystic fibrosis to a tornado. While Donna Cryer didn’t present, it’s always inspirational to talk with her.

Please comment and let me know if I overlooked anyone. Overall, it was an empowering reminder that we will all be patients one day.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.

(Image courtesy of Regina Holliday)

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

View other posts from Eileen

14 Pingbacks/Trackbacks

Siren Interactive
  • Siren Interactive
  • Rare Disease Relationship Marketing Experts
  • 626 West Jackson Blvd, Suite 100
  • Chicago, IL 60661
  • 312.204.6700
  • 866.502.6714 (Toll Free)
  • www.sireninteractive.com