RXDM STORYCAST EP07: Jeanne Barnett of CysticFibrosis.com

CysticFibrosis.com Website Screenshot

In this episode, Buddy speaks with Jeanne Barnett of the online patient community CysticFibrosis.com.


Web: http://cysticfibrosis.com/

Twitter: https://twitter.com/knowcf

Facebook: Facebook.com/knowcf

LinkedIn: https://www.linkedin.com/in/jeannebarnett/


Buddy Scalera: We are here on the next episode of Rx Digital Marketing, the Storyteller edition and I am joined by a fascinating person.  I’d like to introduce you to Jeanne Barnett of CysticFribrosis.com.  Jeanne`, welcome to the show.

Jeanne Barnett:  Thanks Buddy.  I’m so happy to be here.

Buddy:  So Jeanne, before we get started can you explain a little bit about the health condition of cystic fibrosis so that our listeners have a little bit of framing into the health condition?

What is Cystic Fibrosis?

Jeanne:  Cystic Fibrosis is a genetic disease. The CFTR gene was discovered in 1989. Patients get a mutation from their mother and a mutation from their father, but now they’ve discovered more than 2,000 different mutations. To better explain the disease, ou member (StyleComfy) from South Africa made this infographic.

What are the members discussing?

There are pretty much breathtaking concerns if you have this disease.  On our website, members are talking on our forums about lung transplants, pregnancy, allergies, asthma, CFRD – that’s cystic fibrosis related diabetes, medications, delivery systems, lifestyles and much more.  Members may have gastro-intestinal issues, pancreatitis, lung infections, sinusitis, all the different gene mutations and then they’ll be talking about all the tests and all the different procedures needed.  I guess, Buddy, an easy way to describe it is everywhere there is mucus in your body, sinuses, lungs, gastro, but mostly the members that are diagnosed up to now have lung disease.

Buddy:  Wow, and I’ve heard – I’ve done a bit of reading on CF in preparation for this and it’s a lifelong condition and as such you have a community with CysticFibrosis.com, a website, that has been around for a very, very long time.  Can you first just tell me a little bit about yourself and your background and then the genesis and evolution of CysticFibrosis.com?

Jeanne Barnett: background and evolution of the o- line patient community

Jeanne:  I was a math and computer science teacher.  Actually, my dad was in computers in 1938.

Buddy:  Wow.

Jeanne:  He joined the Prudential Insurance Company and worked in computers in the 1950s so I grew up with computers.   I was a math teacher and in the 1980s (I’m telling everyone how old I am!) they moved the computers into the math teacher’s classrooms because there weren’t computer science teachers at that time.

I became a computer teacher and then when I left teaching, because I was fired – that’s another story –  I was teaching girls programming, coding I guess it’s called now.

In 1996 I started my own company and I decided  to make hospital websites.

I initially bought a hundred or so medical domain names, making me a “domainer”.
My business partner had cystic fibrosis and I bought CysticFibrosis.com.  Actually, I thought I would surprise her and she was horrified because cystic fibrosis is also the kind of disease that many people don’t want to say that they have because they may have difficulty getting a job or insurance because it is an overwhelming pre-existing condition.  It’s so expensive.  It can cost a million dollars a year or more.

I asked her the best thing to do this website?  She just suggested we put up message boards.  Buddy, you probably remember the primitive message boards of 1996.  The conversations just fell off the page.  There was no database, people would just start talking.

People with CF can cross infect each other.

The CysticFibrosis.com forums were instantly busy because another thing about cystic fibrosis your community may not know is that people with CF can’t be together because they cross-infect each other.

Buddy:  Wow.

Jeanne:  So that’s pretty horrible so having a safe place where members could actually talk to other patients was pretty amazing back in 1996 before Google, before Facebook,

Buddy:  You started CysticFibrosis.com in 1996.  I mean we’re talking about a much different internet.  What was the first iteration of CysticFibrosis.com like as compared to what it is today?

The first Genentech Drug: Pulmozyme and our community

Jeanne:  As I said in the beginning, there was just some message boards that fell off the screen as people were talking.  I think Facebook is like that now, isn’t it? – the messages just fall away and it’s hard to search for anything.  So I would say it was very, very busy because the patients were so desperate for information and there was a new drug out in 1996-1997. It was a Genentech drug called Pulmozyme and it is still one of the main drugs for the community.

This is kind of a funny story.  The Genentech web site in 1997 happened to list the scientist who invented that drug Pulmozyme on the home page.  His name is Steve Shak and his phone number was on the home page.  I used to call him and say, “Hi Steve. Can you help us with this question about your drug Pulmozyme? It is a a sticky medication and the patients have lots of questions about the delivery system too and cleaning the nebs”.

Something else with cystic fibrosis, patients may have 6 hours a day of treatments and cleaning.

The Patients become the Experts

During the first iteration, I guess I was so nervous because who knew patients would come on line in such large numbers?

CysticFibrosis.com:  One of the first Patient/Caregiver On line Communities
Jeanne Barnett worried…

I didn’t know anybody else who had a community of very sick patients or patients who needed each other and needed help and I worried about the conversations and if members would say something wrong that could hurt each other because we didn’t have the key opinion leaders, the doctors on and we didn’t know back then that patients would really become the experts, comparing and contrasting their disease states and their treatments.


Buddy:  Yeah, we’ve seen a pretty radical shift particularly with chronic conditions where these patients become extremely well informed because they are living with it every day and I would imagine with a condition like cystic fibrosis they’re spending a lot of time online trying to find the latest information, the clinical trials and anything else that can help them with their condition.  I guess that’s one of the roles that CysticFibrosis.com plays for patients these days, right?

Cystic Fibrosis is a gateway for personalized medicine: Vertex Drug Orkambi

Jeanne:  Even today there’s a beautiful blog on our site, I hope you saw it because you said you went on CysticFibrosis.com, but a really thoughtful amazing blog that this one woman just wrote about being part of the first clinical trial and one of the first people to be able to take the VERTEX drug ORKAMBI that would change her genetics.

Patients have mixed feelings about taking the Orkambi drug: Happiness and Guilt

People with cystic fibrosis are really a gateway for personalized medicine.  Their genetics are the ones that a lot of big pharma are trying to change.  Her blog is about how the experience of taking the Vertex drug Orakambi. (Orkambi is a medicine used to treat cystic fibrosis in patients aged 12 years and above who have a genetic mutation called the F508del mutation).

She thinks the drug is amazing and she felt really excited but also bad because she would leave the rest of the community behind.  She was afraid they wouldn’t get the opportunity that she has.  She didn’t know if this would be a cure or what would happen, but right now it’s only the first generation of personalized medication so it isn’t really a cure and she’s just happy that Vertex is discovering help for other mutations that our community has.


Buddy:  How striking is it that the community is so strong that this particular patient almost, maybe I’m using the wrong words and correct me if I’m correct, almost felt guilty that she was doing so well and felt empathy toward the rest of the members of the community.  That’s how close that community is, am I understanding that right?


Jeanne:  Yes. She just happened to write a beautiful blog about this but I know that it’s true from other people who have told me that they felt really bad, that feeling of guilt like you said,  “ I’m one of the lucky ones,” and they love the community so much, they don’t want to leave the others behind.


Buddy:  Well gee, and I think they’re all lucky to have the community that you helped to set up.  I think you’ve created an ecosystem that allows people to not just talk about the health condition but talk about themselves.  I was impressed with how vibrant and active your message boards were.  They were on topic and then you even allow off topic conversation.  What is the secret to keeping such a vibrant community like the one you have at CysticFibrosis.com?

What is the Secret of keeping a vibrant patient community?

Jeanne:  What’s the secret, ok, so I said in the beginning I’m a teacher so what does a teacher do with a classroom?  If you have a good teacher, I’m not saying I’m particularly a good teacher but maybe I’m old enough and I’m experienced enough to say alright so “this is a good class”.  That’s what this is, Buddy.  This is a good class.  When you’re a teacher you hope you get a good class. I guess the secret is to always care about the tone.  The tone matters.  And I think that’s what I’m kind of known for because since 1996 of course there’s been groups that have moved to Facebook and many move back and forth to different groups, and we’re also on Facebook, we have 23,000 likes on Facebook.  We are on Twitter and Instagram too.  One of our members “missAlexbp” is a social community expert keeping us up to date on all the platforms.


Buddy:  Ok.  I did notice you do have, and before I go onto the next thing that I wanted to talk with you about, you do have a rather large community and a lot of engagement.  I was looking at some of the numbers.  How many people are a part of your cystic fibrosis community including your social platforms?

Over 2 million SEARCHABLE messages

Jeanne:  Oh, I don’t even know anymore.   18,000 have joined  but that would be since 2003.  Remember that’s when I bought a database and I saved all the messages.  So there was we said 2 million saved messages in 2010 and I’m not sure how many more there are right now.  But they’re searchable so that’s how much I trust the community.  The community is so beautiful so as you search through things there’s  hardly a misspelling or somebody who can’t construct a sentence.  It’s like a Wikipedia for cystic fibrosis questions.


Buddy:  Yeah there’s a lot of, when you talk about that Jeanne, there is a lot of information there to be mined and insights that are longitudinal.  You can go back and see how conversation has evolved and what the community started as and what they are now.

We have the DOLS:  the Digital Opinion Leaders

Jeanne:   You need to have the digital opinion leaders I call them.  We used to call them health opinion leaders.   I wonder if health consumer, you probably know, is the politically correct term but on a site like ours you need the really good members who are going to lead the conversation, be very empathetic, going to ask and answer the questions knowledgeably, and be very confident and helpful.

The Community:  A Brain, a Heart, and Courage…The Wizard

I did write a blog, maybe 10 years ago, comparing these e-patients, as they were called at that time, to the Wizard of Oz.  You have the scarecrow getting a brain and so you can imagine a diagnosis of cystic fibrosis.  You can’t imagine wrapping your brain around all the information you need to even just take a step forward with this diagnosis for your baby or for yourself, and now we have a lot of older patients getting diagnosed because more mutations have been uncovered and there’s better ways to diagnose CF genetically.


Buddy:  Yeah, I mean there, it’s obviously with new treatments available and clinical trials going on all the time this is a community that wants information and going back to something you had noted earlier, you have community generated content as well.  It was pretty amazing how much information is there and the range of sources.  Is that part of the strategy to keep the content fresh on CysticFibrosis.com?

What is the Strategy to keep the content fresh?

Jeanne:  Yes. You can go back and you can look at conversations and members really like this aspect of our site.  We have one digital opinion leader, littlelab4 CF is his name on the site, and  he has his PhD from MIT.

He’s in his late 60s now and people follow his conversations.  It will probably be about the pancreas or gastro or something, but he’s really an expert and a geneticist.

So he wants to make sure his content is available and searchable.

Whether Virtual or Not, there must be a sense of TRUST

I make friends with many members and sometimes we text too.  LittleLab4CF wants to make sure that his content from years ago is still there and it’s connected and that’s important.

Headlines: What are the latest clinical trials, and the latest drugs for which mutations?

I never know how the topics and headlines are going to proceed, it could be a whole thing about pregnancy or the latest clinical trial.  And watching how the conversations have progressed over the years matters too.  There is a sense of trust.  Headlines often revolve around the latest clinical trials or drugs.


Buddy:  Yeah, and I think that I’ve noticed that you have a range of people participating.  Is it, would you say it’s mostly patients or is it patients and caregivers?  Do you see healthcare professionals and do you also see the pharmaceutical manufacturers participating?  Who’s participating there?

Who participates?

Jeanne:  In 1996 it would be patients, families, and then we had kids, but then a rule came out that said you had to be 13 years or older to be saying anything, but actually there was a time when dads used to be in chats with their kids on their laps.

We have the patients and the caregivers, then the story became as the years went on that the caregivers would start talking in the patient group and some of the patients got very angry and that could be where tone came in, because the patients didn’t want the caregivers in their forum space.

Times have changed: Patients/Caregivers/ Healthcare providers all participate together

And so of course nowadays it isn’t like that all.  I don’t think it’s like that anywhere, but it was at one time.  So now when I observe the conversations:  I love to realize: there’s a caregiver, there’s a grandmother, dad, and then,

Members have “died in our arms”.

We have had patients die in our arms.  Because it’s a horrible disease I have been to a lot of funerals.

If the patients are dying, then everybody would circle around them, maybe more like that would happen on Facebook today, there would be the caregivers and partners.

Usually, women were the ones who died in the forums then we continued to take care of family members and partners till they got on their feet again.

Health Care Providers and Industry Leaders are the lurkers

Buddy:  Do you see healthcare professionals or pharmaceutical industry professionals also joining the forums?

Jeanne:  Healthcare professionals, we have a nurse on right now and we have respiratory therapists.  Many professionals both health care providers and industry leaders are lurkers and they sign up for our newsletter.

These conversations have the RAW DATA

Last year a doctor called me and  said “I get your newsletter”. Hhe had just joined and then he realized when the Vertex drug came out, he noticed that the information on our site and the topics the patients were talking about was raw data and so he called me to ask me if he could use some of the raw data.  He was going to write an article for New England Journal of Medicine or one like that and he was concerned about some of the risks patients were talking about.  He liked having access to the immediate data the patients were discussing and he wanted my permission.

Always be gathering email addresses for newsletters to build a community.

So that’s another important thing for anybody who wants a community website:  gather the email addresses.  We have over 25000 email addresses.

In the past, perhaps 10 years ago, we had a KOL (Doctor) on the site.  He was challenged by the patients, and he left the site abruptly. Nowadays patients are partners with their healthcare providers, so things have changed.

With pharma, recently we had a pharma company want to send out information in our newsletter and now we have another pharma who has a new enzyme and they are trying to figure out the best way to reach our patients having been given different formats.

The Best Way for Pharma to be involved with our Community

What’s really cool, Buddy, is that I always hire the patients if I have any money, so one of the ones working with us now is a woman with cystic fibrosis from South Africa, and she’s also a professional web designer.  Her day job is doing web work for solar energy in Africa.
She is well qualified to speak with pharma companies about reaching out to the community. The pharma companies need to know the best way to reach the patients, or what to say and how to say it. It can be as simple as “what to put in a subject line in a newsletter” as happened recently.

Remember when we were at PanAgora Pharma Summit together in June.  I wonder did you go the Second City Presentation after lunch on the first day?

People with a chronic disease may have their own language

Buddy:  Yeah, I did.  Yeah, they were participatory at getting us all up to move.

Jeanne:  Right.  And so that was improvisation, that’s what you almost need because  cystic fibrosis members have their own vocabulary when speaking to each other.  They may introduce themselves with their mutations and also with what the status of their lung function is.  “I’m a double delta508 and I have a 70% lung function”, wouldn’t be unusual for their signatures.

Buddy:  Stay down this path.  I think it’s very, very interesting this observation that you made, Jeanne, that the community has their own, their own vernacular, their own language as part of their tribe, their community, so to speak and that’s how they relate to each other.  Is that what you’re seeing?

The community has their own vernacular.

Jeanne:  At first, the genetics weren’t a big deal.  Maybe that was 10 years ago.  After that,  they all began being tested, then they wanted to meet people who had their genetics, and then they want to see what the differences are, “are you on these medications?”, “What is the best clinic?”? Our patients can be on 30 or more medications at a time.  And then it’s also the order of the medications that might matter.  Having the same mutations gives a sense of commonality.

Buddy:  And they have their own form of language.  They identify by their mutation and the medications, and that’s great because that shows true community.  That shows that it’s more than just a quick post or a tweet.  This is in depth conversation where they’re getting to know each other.

Jeanne:  It is a tribe, a community. They love each other.  I love them.

Buddy:  <chuckles>  So talk a little bit more about pharma because I know that a lot of our listeners will be working in pharma marketing or branding departments.  Can you talk a little bit about how pharma can avoid stepping on a landmine in participating in communities and maybe talk a little bit about some best practices, things that they might want to do because I’m sure you’ve seen a lot of different things over the years.

Pharma Scientists and Pharma Marketers and our community

Jeanne:  I think going back to the very first beginning of our conversation, Steve Shak, he’s the scientist who invented the medication Pulmozyme and we use to call him in the late ‘90’s.

Imagine if the patients could be involved with the scientists today.  I think that would be brilliant.  I’ve found over the years, I don’t know if you would agree, but a lot of the pharma marketers change disease states every two or three years within the pharma company.

They might be involved with cystic fibrosis for two years or three years, then they might get assigned to a stroke team, which really doesn’t have much to do with cystic fibrosis.

Where the marketers are coming in from is really important, that they’re familiar with the disease because it’s so complicated.  I’ve noticed that some of them are not familiar with the disease.  I’m sorry to say that.

Some of them have mined our site, of course, and then they should know the background of their own product because then we find out, the packaging for their product could be metal, cutting the fingers of the patients, or the patients have to store it in their refrigerator and they’re storing a lot of medications.

How do the patients travel with the medication, how much time does the medication take?

Personalized Medicines are expensive

How do patients afford the medication?  I know the Vertex drugs are $311,000 per year for Kalydeco and $295,000 per year for Orkambi.  I think the patients are getting help, many are on  Medicaid and some states aren’t paying for it, so I guess if I was in pharma, I would want to know everything about my drug, and who’s the competition, and how can we work with the competition too.

Can Pharma Work Together?

I’ve always wondered, I don’t know if you agree with me, if pharma could work together.  Imagine that, working with each other rather than competing when patients have questions about the order the medications or if a separate nebulizer is needed for all the different meds and lots of other questions.

Many people also come to our site looking for a diagnosis.  Members are always so empathetic and kind.

Are Pharma Marketers able to Leverage our Community?

Buddy:  Well I would imagine that pharma might be able to work with communities like you to do different surveys and research.  I think you had done some surveys and research that you had released that gave information about the patients and the ways that they used the medications.  Are pharma marketers able to leverage a community and how would they go about leveraging a community?  Would they go through a leader like you to and out about more about surveys and digital opinion leaders?

Jeanne:  I think that would be the smartest thing to do.  Many times pharma come through marketing companies. I am not sure if they need that extra protection or whatever, but we do a lot of surveys of the community about the different medications and sometimes it’s a secret, but the patients know right away what the medication is.

And there are the certain questions they ask to prove that you have cystic fibrosis, which is a very easy thing to prove because they have their own languages and because they’re so many different things that can be wrong.  Yes, so yes, reaching out to me would be perfect.

A new pilot where pharma gets access to the patients data through a private app

Buddy:  So one of the things that you had talked about at the conference was that you are working on an innovative new technology and I believe the website is CFTechnology.org where patients will be compensated for the data that they help to collect.  Can you just talk a little bit about what you’re working on?
Jeanne:  We have a pilot, CFTechnology.org, our charity, joined with Portable Genomics Patrick Meril’s new app, I met Patrick at the Rare Genes Summit in California last year.
His app has 18 modules but the patients can also make their own modules so it’s a lot of information, a lot of data that the patients are collecting both genotype and phenotype and then the patients may choose whether they want to share it or not and the app is private.  If they choose to share it then the pharma would pay our charity and we can pay the patients for their data.  The data belongs to the patients and this is an opportunity for them to bring the data to the marketplace.

We have digital spirometers for our pilot

There’s 20 patients for 30 days and we are working with some mobile apps too. We are currently  looking for a really good sponsor.

The reason I was speaking at the mobile device conference  (PanagoraPharma)  is because we already have a spirometer company from Sweden that’s  given 20 digital NuvoAir digital spirometers.  And then Pari the nebulizer company is giving the nebulizers and compressors.  They’ve already sent them to me.

We are also working with a laboratory at the University of British Columbia.  Corey Nislow PhD is the scientist who will be doing gut microbiomes and exome sequencing with the patients.

This is exciting.  We’re just reaching out to find pharma and/or academic sponsors.


Buddy:  So this is pretty innovative, Jeanne.  I mean you’re getting patients to use the devices and that probably increases the accuracy of the data and then allows this loop back to manufacturers so that they understand usage and then the patients, it’s like they’re getting something out of it too.  I was impressed with your video and I’ll link to it in the show notes that explained how it benefits everybody.  I guess my biggest question is why did it take so long for somebody to come up with this?

This pilot is Innovative!

Jeanne:  I know.  I have the CF community and when I was out at Rare Genes Summit and Patrick asked a question at one of the presentations,  “Do you think patients should be paid for their data”… I followed him down the road and I said yes because it belongs to them, and their data is some of the most valuable in the world.

Our patients data is valuable!

Buddy, there are only – this is what I’ve heard – only 200 diseases that have medications but there’s 7-10,000 diseases out there with no medications and because this community has such good data through genotype and phenotype, their data very valuable.

I think the Vertex just did some clinical trials that were very successful, thank God, and their stock went up $8 billion this past July.

Buddy:  Wow.  Well it must be very exciting for you to have grown and nurtured this community and provided all of these informational resources like blogs and videos, but now also to be contributing back to science, that must be a pretty exciting time for you.

Jeanne:  Right.  I’m always thinking that when I was growing up in the 60s we had the, what was  called, the audio-visual teacher, and that was teacher I wanted to be back then, that would bring the latest videos or audio, that was all we had.

These are exciting times for technology and our community

But now we have all the mobile devices.  The woman from South Africa is amazing.
She tells me about all the devices that could really help the CF community if they were, being attached to the phone, like the thermometer that just goes across your forehead from  Nokia, and actually the spirometer is attached to the phone and that gives their pulmonary function test.  Most of our members don’t have a digital one.

They go to the doctor three times a year or four times a year and they use the spirometer in the clinic.  They have different mouthpieces, but it’s one spirometer.

Our patients can lose 40 points or more between visits.  So to have their own spirometer attached to their phones, they can actually predict when they will have an exacerbation.  It’s really amazing what the digital devices are allowing for this community.

Buddy:  Well this whole pilot is fascinating.  Jeanne, I hope you come back and report the results of this and let us know what happens with your pilot.

Jeanne:  Oh I will.  I’ll be calling you.

Buddy:  Now you had one other thing that you were working on, another project.  Did you want to touch on the other project that you are currently revving up right now?


Jeanne:  Oh yes.  There’s a possibility that we’ll be setting up on line CF centers throughout the world because CysticFibrosis.com is global.

For example, we have 32 patients in Pakistan.  We have patients in India.  We have patients in outposts in Africa, patients in South America who really don’t have the access to the clinics. This other project will be setting up virtual clinics with another type cf app for the patients to use and to learn and to be cared for throughout the world.

Buddy:  Well Jeanne, I think that comes full circle to what we started with which was the participation of pharma manufacturers and how they can participate.  It sounds like you’re creating a runway for brand managers and manufacturers to really get involved with your community.

Jeanne:  Thank you.  I am.  Absolutely. Bingo.

Buddy:  So tell us where we can find you.  Tell us your website.  So I know we have CysticFibrosis.com and we have CFTechnology.org, but you’re also on Twitter, Facebook, where can people find you?  What are your handles?



YouTube CFTechnology.org

Ok, it’s KnowCF.  So it’s Facebook.com/knowcf and the Twitter is also @knowcf.

Buddy:  And then also as you mentioned a patient or a caregiver or anybody can also join your newsletter.  You have a newsletter?


Jeanne:  Yes.  At CysticFibrosis.com you can join the newsletter.  That’s really important.  We put them out twice a week now.

Buddy:  And I know that I now am with you on LinkedIn.  So you’re on LinkedIn.  Do you have a Twitter account or anything where people can follow you to find out where you’ll be speaking, making appearances next?

Jeanne:  Well probably the LinkedIn one.  I have close to 5,000 connections on LinkedIn so I do, I do put blogs up on LinkedIn.

Buddy:  Yeah it sounds like technology is not a distant concept to you.  You are a user.

Jeanne:  I’m there.  And you know I love technology.  I guess because of my dad too.  Grew up with technology.

Buddy:  Will there be any places where people will be able to see you speak, or is there anything that they should be looking for from you in the coming months?

Jeanne:  Well I think I’ll be speaking at, I’ll be pitching actually I think, at the Global Genes conference in California in two weeks, September 14th. I’m going to be with Patrick and we’re going to be talking about our app, but I’m not scheduled to speak otherwise.


Buddy:  Well Jeanne, I’m going to invite you back to speak here again.  You have been a wonderful guest.  Your insights are amazing and what you’ve accomplished is equally amazing.  I applaud you and your efforts.  Thank you so much for joining us today.

Jeanne:  Thank you.  I’m so happy you invited me, Buddy.  I loved talking to you.  Perfect.

Buddy:  So we will sign off and I’ll give a postscript after this.  Look for links in the show notes for Jeanne’s websites and her YouTube videos, and keep telling stories, marketers.





Web: http://cysticfibrosis.com/

Twitter: https://twitter.com/knowcf

Facebook: Facebook.com/knowcf

LinkedIn: https://www.linkedin.com/in/jeannebarnett/

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