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Cystic Fibrosis Patients and Caregivers Becoming Experts in the Digital Arena

The April issue of FirstWord, an online journal for pharmaceutical professionals, features an article highlighting our Cystic Fibrosis community here at, “New KOL Engagement: Building Relationships with the Digital KOL Generation.” One of the main ideas of the article is that expert patients and caregivers, Key Opinion Leaders or KOLs, should delve into Twitter and other social media to become Digital Opinion Leaders (DOLs).

This reminded me of Malcolm Gladwell’s book “Outliers: The Story of Success” wherein he explains that it takes 10,000 hours to become an expert in anything, whether it be a musical instrument or a field of study. I contend that our community members are outliers who have spent countless hours working with and learning to manage the complex disease of cystic fibrosis.

The FirstWord article is priced for industry, but a 2014 article on the site BrainFood TV, is free and covers similar themes. It calls on patient and caregiver experts to take the lead in the digital sphere to increase knowledge and improve outcomes: “KOL vs DOL, Part I: the emergence of Digital Opinion Leaders in Healthcare.”

The article quotes Albert Einstein on how difficult it can be for new leadership to challenge the status quo,

“The permanence of an expert in a subject area is the greatest obstacle to the advancement of the subject.”

–Albert Einstein

Here is a video of Malcolm Gladwell describing the 10,000 hour rule for anyone who’d like to learn more.


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1 Comment

  1. June 4, 2016 at 2:28 am

    Kudo’s to Imogene and the informed, knowledgeable and self sacrificing people who share hard earned learning on experience with pulmozyme or Kalydeco and such. Some of the most valuable and useful information exchanged are in the form of a dialogue based upon an initial question or problem with a rare process or procedures, common to fellow CFers.

    Most often, the issues discussed are delivered with compassion and practical experience. Other information comes from watchdogs who follow news about drugs and medical advancements, the best news on drug trials.

    It’s been a twenty year journey to begin to be acknowledged by professional organizations that see how our shrinking world has connected communities dealing with serious chronic illnesses.

    Nice to See!