A Brain, A Heart, Courage: the e-Patient community for Cystic Fibrosis
Back in 2010, Jeanne Barnett wrote about the e-patient, using the metaphor of the Wizard of Oz: it is still relevant today with patients in our cystic fibrosis community being very astute at learning, empathetic toward each other and courageous going forward with many new drugs for personalized medicine.
Thanks to PharmaPhorum for publishing this blog in 2010! Read the original article below.
CysticFibrosis.com is an “e-Patient Social Health Community” that has, I am proud to say, been called a “hub of information,” with pharmaceutical and hospital websites throughout the world now linking to it.
When I started this social health community in 1996, I was a teacher and had no preconception about what the right mix of medium and message would be. My company, Medrise, had purchased over 60 niche medical domains, and my original business partner had cystic fibrosis, hence one of the domains was www.cysticfibrosis.com.
I developed message boards for the site at the onset, and added videos, blogs, chat and newsletters as they became available. Through empathy and humor, members began sharing ideas for adherence—ways to motivate themselves and improve their complex and time-consuming health care regimen. Lurkers flocked to the site as well to watch and learn from the conversations.
The site spawned a new model of information exchange: questions and ideas percolated through the stakeholder community. Information from physicians, pharma and research groups is now shared instantly with thousands of members and lurkers.
CysticFibrosis.com became a hub in part because people with cystic fibrosis are quarantined from each other for fear of transfer of deadly bacterial lung infections. And because the treatment protocol for cystic fibrosis is arduous, complex and time-consuming—the patients and families need and benefit from information, support and hope from each other, not just from the medical and mental health community.
“CysticFibrosis.com became a hub in part because people with cystic fibrosis are quarantined from each other for fear of transfer of deadly bacterial lung infections.”
Over the past fifteen years, our e-Patients (patients, family members and caregivers) have become defined stakeholders along with industry and health care providers.
We now have 10,000+ members** who have volunteered their demographics. They represent 121 countries and territories. We have over two million searchable messages, six thousand patient and caregiver blog posts. Our 121 videos and 10 channels feature healthcare professionals, doctors, sponsors, patients and caregivers. Our bi-monthly newsletter, clinical trials search engine, research/news feed, and a community developed medication glossary, the MediWidget, are unique and crucial features of the site.
I see The Land of Oz by Frank Baum as an apt metaphor for the e-Patients’ experience at www.cysticfibrosis.com. e-Patients first deal with the diagnosis: the Tornado as it hits the farm. A patient or caregiver with a cystic fibrosis diagnosis is lifted from the roots of everything familiar.
From the conversations on our ‘Newly Diagnosed’ forum, we read:
“I am numb, actually it’s hard to believe all of this is real…”
“I’d say welcome but this is not a place a parent would choose to be. That said it’s a great place to get support and info – it has helped me deal with my daughters dx tremendously.”
“don’t give up or take no for an answer if you believe in your heart something is wrong. Most of my problems are believed to be from the problems caused/complicated from not being diagnosed in a timely fashion.”
The e-Patient has “killed” the Wicked Witch of the East: the 20th-century-and-earlier concept that medical information should be held close to the vest by medical professionals. The Hippocratic Oath was taken as a covenant to instruct “pupils who have signed the covenant and have taken an oath according to the medical law, but no-one else.”
The lovable Scarecrow e-Patient is doing what we witness everyday at CysticFibrosis.com, getting a brain! The caregiver or patient takes home information from one cystic fibrosis center, and then compares and clarifies it with the worldwide community on CysticFibrosis.com.
Through communication with other e-Patients, our members come to a better understanding of the co-morbidities and breath-taking concerns of cystic fibrosis: lung transplants, pregnancy, allergies, asthma, cystic fibrosis-related diabetes, gastro-intestinal issues, pancreatitis, infections, sinusitis, gene mutations and their significance, tests and procedures (pulmonary function tests, fecal fat tests, blood tests, CT scans, bronchoscopies, sputum cultures), medications, adverse effects, aerosol delivery systems, port and picc lines for intravenous drugs, g-tube feedings, chest physical therapy and mucus clearance, clinical trials, research in progress, fundraising, social and home care elements such as school protocol, exercise, nutrition, safe cleaning of equipment, and more.
From our members we read:
“My doctor says ‘You know more than the interns’”
“And I am impressed with my doctors and staff with how they have accepted and embraced this new me, respecting that I want to be proactive and informed. My health has steadily improved and this would not be possible without cysticfibrosis.com. I like having control of my health decisions…”
“Aha, because of this site, now I know what my doctor is talking about.”
Through their conversations, our e-Patients realize there is no tried and true way for everyone…the yellow brick road is indeed “uneven”.
“Through communication with other e-Patients, our members come to a better understanding of the co-morbidities and breath-taking concerns of cystic fibrosis…”
The Tin Man is on a journey for a heart. This is the “heart” of what makes us a community and not a library. Many come looking for information, but support becomes the by-product of the search. Often, they are not expecting this, it is the gift the members become to each other.
In the story, the Tin Man clears the passage. The web clears the way for us to tell our stories to the target audience and to listen to relevant stories.
The fine line between information and support can be seen in the writing of a mother whose daughter had been an active member of www.cysticfibrosis.com up until her death.
“Hi Imogene (Jeanne),
Debbie loved this site but who could’ve known what a gift it would turn out to be to her family. Thank goodness for her blogs. I enjoyed them while she was here but now that I can’t talk to her it’s like having a little piece of herself that I can still reach. I am so happy to have them…. Thanks so much, I hope all is well with you. This is a wonderful gift you provide.
The Lion finds courage
The cystic fibrosis community is a study in courage. Every day I witness the courage people need to make health decisions and to venture out as e-Patients.
Courage is personal. We stand alone and we stand out when we have it.
Our community is full of members who have the brain, the heart and the courage to be Health Opinion Leaders (HOLs). These are the members we count on to begin new programs, to work with the pharmaceutical companies in organizing the information for the site using ‘Frequently Asked Questions’ to create programs like our H1N1 video series and MediWidget application.
The wizard is the wizard: because of the wonderful things he does!
During the 20th century, the wizards were behind the curtain. Doctors chose from a palette of medications, delivery systems and products for the patients. Most of the messages and threads on CysticFibrosis.com are questions about medications and products.
“The cystic fibrosis community is a study in courage. Every day I witness the courage people need to make health decisions and to venture out as e-Patients.”
Through our polls we learned that 75% of the patients bring information from CysticFibrosis.com to their doctors and 80% of them call their doctors partners.
The 21st century wizards will find patient adherence increases through their participation in social health networks.
Industry leaders and medical professionals now have the opportunity to work directly with their target community through polls, surveys, videos, e-blasts, specialized Q&,A forums and more.
As one Health Opinion Leader once said, “We have so much to teach them!”
This is, after all, a working Pharm!
**cysticfibrosis.com now has 18 000 forum members in 2017
About the author:
Jeanne Barnett is CEO of Medrise and Founder of www.cysticfibrosis.com. For enquiries regarding she may be contacted at [email protected]