The strength of online patient communities

Paul Tunnah interviews Jeanne Barnett

Medrise and CysticFibrosis.com

It would seem that the patient has always been one step ahead of pharma and healthcare providers when it comes to using the internet for information about their disease. A quick Google search on any disease area is sure to uncover a number of information sites or patient communities, designed to provide information and support to those who need it. However, many of these sites are still fledgling operations and it can take many years to build a solid community and the level of trust required from patients.

To hear first-hand what it is like to build such a community, pharmaphorum caught up with Jeanne Barnett, who founded the website CysticFibrosis.com in the late 90s with a vision to support cystic fibrosis (CF) sufferers. For Jeanne, this has clearly been a very personal journey that has involved immense dedication and commitment, both materially and emotionally, but one which has resulted in an online e-patient network that now links over 10,000 people across the world. Today, the site provides a wealth of information first-hand from other patients and a unique form of support for CF sufferers globally.

During our interview, we explored what the key learnings have been, how the site operates and what pharma can learn from such sites, during an informative and moving discussion.

To listen to the full interview, please click on the play button below, with a shortened transcript of some key highlights shown in print below.

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Selected highlights

PT: Perhaps you could start just by introducing yourself and your website?

JB: I am a former high school math and computer science teacher. I started a web development business back in 1996 purchasing 100 niche medical domain names, one of them was CysticFibrosis.com. I had bought that domain because my original partner had cystic fibrosis.

PT: So that was an inspiration for you to set up the CysticFibrosis.com website?

JB: Yes - and we designed the site with message boards and informational links back in 1996 and since then it’s become a hub. The patients and families need and benefit from our information, support, and the hope they get from each other at the site, not just from their medical community.

PT: How is the site going today?

JB: Okay, so the level of audience is an interesting question. It’s a wide range of ages, from 13 years old to 70 years old and the level of education varies from high school students to advanced degrees. Some of the e-patients are physicians themselves and many other e-patients have advanced degrees in marketing, legal, and science, to name a few. So now we have over 11,000 registered members. They represent 124 countries and territories. There are usually 20,000 unique visitors a month, but most of them are lurkers, meaning they show up and watch the action without signing in and discussing the topics. We have over 2 million searchable messages and 6,000 patient and caregiver blog posts. So the engagement is 95% forum based, but we also have 121 videos and channels featuring health care professionals, doctors, sponsors, scientists, and inpatients. For every searchable message there are five more private messages where patients come on and are just talking to each other without being in the open forum.

PT: What have been the main challenges along the way that you’ve had to overcome?

JB: Well for me, I’m a teacher, so it’s a perfect venue for a classroom and it’s a frontier, but as with most ventures I had to learn many lessons. Working with some terminally ill and frustrated members, we have always been a site that has invited everyone. That’s been a challenge. Health opinion leaders have appeared to help determine how to deal with the problems, establish integrity, and ban disruptive and intolerable participants. We have a reputation for integrity.

Mixing actual patients and caregivers has been a blessing to the community, but getting the right formula took time. Sometimes it gets more interesting, there would be members who want to get into little arguments with each other and then we become a very popular place! We’ve had advertising professionals sometimes try to imitate patients promoting their products over well established brand names and so the community learns to identify the trolls and the ruses.

"The patients and families need and benefit from our information, support, and the hope they get from each other at the site..."

PT: How did the discussions evolve, particularly for new entrants?

JB: Okay, so the patients ask their own questions and moderate their own discussions. Through communications with other e-patients, our members come to a better understanding of the co-morbidities and the breathtaking concerns of cystic fibrosis. They’ll be talking about lung transplants, pregnancy, allergies, asthma, CFRD, diabetes, gastrointestinal issues, pancreatitis, infections, sinusitis, gene mutations and there are significant, tests and procedures that they will be talking about all the time - pulmonary function tests, blood tests, CT scans, bronchoscopies, sputum cultures, aerosol delivery systems, port and picc lines, IV drugs, tube feedings, chest physical therapy and mucous clearance. They’ll be encouraging each other to get into clinical trials, they’ll be talking about research.

Today they are talking about a new drug that’s coming on the market that was just approved as well as fund raising, social and homecare elements, such as school protocol, exercise, nutrition, safe cleaning of equipment. And there’s more, that was just a little window into some of the things that become their lives.

A quote from one of the patients is: “because of this site, now I know what my doctor is talking about.”

PT: If we look beyond the patient groups, what level of interest do you get from the industry or healthcare provider groups in using the site?

JB: Well I’ve always invited industry leaders to sponsor the community to be there. We have had support from Genentech and their CF living program and Novartis and their CF Voice programme. They could be called educational type programmes, non-branded sites. We also have had links from some well done branded sites, like Eurand’s enzyme Zenpep. Ambry Genetics provides a genetic counsellor to answer the patients’ questions and his name is Steve Keiles. He’s a favourite on the forum and he was missing in action a couple of years ago - I remember the patients wanting to know where he was and it turned out that he had had a baby and they spontaneously gave him a baby shower on the site, they just love him! This fall Nature’s One, which is an organic medical food company, will be providing a dietician to answer questions. And, of course, the goal is always to have a pharmacist resource and hopefully we’ll get one in the near future.

PT: Just looking at cystic fibrosis, what have you learned as being the main challenges in the area of adherence for those patients?

JB: So the patients are just really helping each other with adherence all day long and on a site like CysticFibrosis.com that’s what they talk about. They talk about their treatment regimen, they talk about how they can make it faster, easier. Treatment time for cystic fibrosis can take up to three hours a day, so “how are you going to do this, how are you going to face just the time challenge with this?” is part of their adherence problem. And then the amount of education they need for all the drugs and the DMEs they use, how to clean their durable medical equipment because they have such death-defying germs and drugs, germs that they have to make sure that they are not re-infecting themselves with and then the expense of the drugs. Today there is a topic on how to pay for a particular drug that costs $5,000 a month.

"...I remember the patients wanting to know where he was and it turned out that he had had a baby and they spontaneously gave him a baby shower on the site, they just love him!"

PT: Do you think the success you’ve seen can be re-created in other therapy areas, both in terms of adherence and the general benefits that the site is bringing to patients?

JB: Yes, I do, because every day there are testimonials that give me reason to believe that this is a good direction to go in. I think it depends a lot on the condition. Are the patients online and searching for information? I think the pharmas know who their drugs benefit and so the first step would be for them to look online and see how they could find those patients. Then they have to learn how to listen to the patients and there is just so much with that, there is all the language.

And since patients have been doing this for 15 years or more on their own, they’ve been grouped into these e-patient communities. They are empowered to innovate fundamentally, and by this I mean they have listened to each other about how the different drugs are reacting. They are working with the risks, they are encouraging each other to find new ways to live their medical regimens, and they already know what the prescription box labels say and they know what’s left out. They compare and contrast with what their healthcare professionals are teaching and prescribing. The topics the CF e-patients are talking about could have meaning for lots of other diseases.

PT: Do you think it’s possible for the pharma companies themselves to achieve the same success as you have with these types of websites, or do they really need to sit outside commercial bodies?

JB: I guess that’s a big debate right now. I think the pharmas should do what they do best and that’s be scientists and bio-technicians and discover all these great drugs. They should let us know from a really good branded site what’s going on. And then if you are going to sit outside your commercial body then you may want to, as some of the pharma companies are doing, start your own patient communities. But it does come down to the conversations. On CysticFibosis.com you pass through a rainbow of human emotions in every post, so I think this isn’t exactly like a Facebook kind of a conversation or, like the Japanese say, Pecha Kucha chit-chat. It’s not Twitter in 140 words or less, it’s not texting and there are no prescriptions for these types of conversations. I’m not sure that you could have exactly the same thing as CysticFibrosis.com using a commercial website.

Tricia Geoghegan from Ortho-McNeil-Janssen Pharmaceuticals (in October 2009 I listened to one of her videos that was put out by Kr? Research) seemed to be one who pushed open the door to social communities on the pharma side. She created a Facebook community for ADHD and she agrees that the goals need to be about serving the patients as people. But those sites carefully measure and manage the sites from the top down and all the discussions are censored to never mention a product and to pass the adverse events on to the FDA. The leaders of those sites are “Mom-bassadors” and they’ve been carefully selected, so it’s not really the same as the pharma talking directly to the patient community. I think it’s an interesting start.

"The topics the CF e-patients are talking about could have meaning for lots of other diseases."

PT: When you look back at the work you’ve put in and what you’ve learned from your community over this time period, what are the key insights that you take away from it all?

JB: It’s a classroom, a good teacher listens to her class and finds more and more ways to hear the stories, bringing out the artists and the scientists in the students. The changes that used to take centuries are now occurring at warp speed, so to be relevant, we can’t lag behind, technology is calling us to wake up and lead. Pharma industry leaders and healthcare professionals appear to be just becoming web-savvy. I don’t think that’s really true, I think that they’ve just been sitting watching very carefully and deciding how to jump in, but all of a sudden we are faced with telemedicine, mobile health, and other wireless applications. The lessons always lie in the questions. I love this question from Kevin Kelly, the editor of Wired Magazine: “what is technology asking of us?” And I venture the answer - it’s asking us to be good stewards. If we are not paying attention, unfortunate outcomes could occur.

PT: If you went back and you launched the site again, is there anything you’d do differently?

JB: No! It’s been such a beautiful learning experience.

PT: What are you most proud of when you look at where the CysticFibrosis.com website is today?

JB: I have to say that I really experience awe and humility, not pride, when I take the time to comprehend the width and breadth and depth this community gives the world. The more I get involved with the industry leaders the more I come to understand that this little community holds the key to unlock so many medications for other diseases.

PT: For somebody looking at another therapeutic area to try and recreate what you’ve achieved with CysticFibrosis.com, what would your key advice be to them?

JB: e-patient communities can spring up organically or they can be planted with an arrangement in mind. For me it was by virtue of a comprehensive niche domain name, CysticFibrosis.com, that a vibrant community came to be. For a pharma company it would be the drug that they’ve spent so much money and so much time developing and now they get to look at a community and discuss the different aspects of the drug with the community. And then, from those communities splinter groups come and bloggers develop and they get a following. Each of these groups will have their own personality and camaraderie. But I know one thing: they will all involve passion, commitment and time.

PT: Jeanne, it’s been an absolute pleasure speaking with you and I think all you’ve achieved with CysticFibrosis.com is incredible, the passion that you have for it clearly comes across. Thank you for your time and I wish you every luck with continued success of the website and the support it provides to CF patients worldwide.

JB: Paul, thanks for your thoughtful questions, and it is always a pleasure to speak with pharmaphorum.

About the interviewee:

Jeanne Barnett is CEO of Medrise and Founder of www.CysticFibrosis.com. For enquiries regarding she may be contacted at Jeanne@medrise.com.

Readers may also be interested to read “Learnings over the rainbow from an online patient site”, which was published on pharmaphorum in May 2010. Jeanne will also be speaking at the forthcoming eyeforpharma “7th Annual Patient Adherence and Engagement Summit” conference in Philadelphia, US at the end of October 2010.

How can pharma best engage with online patients?