Cystic Fibrosis Notes and Notable: Jeanne Barnett on Patient Communities – What They Do and How They Help

Drug Market Info presents Cystic Fibrosis Notes & Notable, an interview series with leading voices in the struggle against Cystic Fibrosis. (For more data on Cystic Fibrosis, see the Drug Market Info Cystic Fibrosis Fact Sheet)

Today we present our interview with Jeanne Barnett, a teacher, web developer and patient advocate who established CysticFibrosis.com. She established CysticFibrosis.com in 1996 through a company called Medrise. Medrise develops solutions for online media, market research and health resources for various audiences.

CysticFibrosis.com spawned a new model of information exchange, at least in part because cystic fibrosis (CF) patients are often quarantined from each other to avoid bacterial infection. However, CF patients also undergo very complex, time-consuming treatments, which can be greatly improved through interaction with others. CysticFibrosis.com has provided the CF community with a way to connect to each other and has evolved into a vibrant online social network. Jeanne also advises and coaches companies on how to engage with the CysticFibrosis.com e-patient community.

We caught up with Jeanne recently to learn more about this one-of-a-kind resource. Here is what Jeanne has to say about CysticFibrosis.com:

You have a very interesting background in online media. How did you get involved with cystic fibrosis?

The site was originally designed because my partner had CF. It became instantly busy as patients reached out, understood and empathized with each other. As I reviewed the site in this early stage, I began to realize it was becoming layered with stories and facts about the disease itself. I was so taken by the huge unmet need that I decided to commit for the long haul.

CysticFibrosis.com has evolved into patients from all over the world sharing their experiences with drugs, delivery systems, the devices and equipment they are using, exercise regimens, alternative medicine, diet, treatment protocols as well as their specific CF mutations. Members have a deep-rooted need for belonging and knowing more in order to have hope in the future.

How many members are in the online community and where are patients located?

We have 14,000 members who have filled out profiles, many including optional genetic mutation information; over 11,000 are in the US and close to 700 in the UK. Overall, we have 121 countries and territories represented.

Who exactly is the community composed of…is it mostly patients, caregivers or others?

We have 40% patients, 45% caregivers and 15% others.

Do you need to be member to access the site and what does membership entail?

You don’t have to be a member to read the messages. The site is free to all and about 2,000 viewers access it every day. Membership entails filling out a form with some optional questions about research and mutations. Once you are a member, you can receive our newsletters and you can post on the site.

Is the community open to industry and what’s the best way for a company with CF products to interact?

Our site facilitates and is an agent for CF patients. In addition, we have good relationships with many pharmaceutical companies and device manufacturers. The best way for a company to interact is to address patients’ needs and answer questions patients have. Companies have done this in the past with general helpful videos. Patients have also signed up for clinical trials through our site. Companies can ask questions of our community and we have excellent response rates to our surveys, usually 500 members in 3 days.

What do you view as the primary benefit of cysticfibrosis.com for the CF community?

CysticFibrosis.com saves lives. I have heard this in testimonials many times. Perhaps, people have lost hope. By sharing experiences, people find new ways to cope with a challenging condition. Or it may be that patients have never heard of a particular treatment or how important exercise and diet are to their well-being. Our community serves as a backup means of support and caring.

What drives your members to continue returning and contributing?

This is a complex disease and members learn something new every day. Patients can easily be on 17 drugs at a time and use three or more medical devices. There are always updates, new products, and clinical trials on the forefront. Besides an abundance of empathy, there is a lot of knowledge about the disease. CysticFibrosis.com is easily found on the web and may be one of the first places a new patient or caregiver finds on a Google search.

What predominant themes or issues have emerged since you started the site?

Patients talk about medications, delivery systems, activities of daily living, how to sanitize and clean equipment (always an ongoing question) because manufacturer’s directions may be inconsistent with established patient procedures.

Even when people branch out on their own, starting a site or blog, they stay tethered to our community.

Do you routinely survey the CF community? How do you like to work with companies that have products for CF patients?

Yes, we routinely survey, and the community always responds to surveys. Patients like to contribute important information. In this way they can stay informed and learn what is on the horizon in the way of drugs, devices, and healthier living. I suggest always allowing this community to comment on surveys. We have so much to learn from them!

They are the experts (In The Outliers, Malcolm Gladwell defines an expert as someone who has studied a topic for 10,000 hours). These patients are way over that and converse on so many levels about their disease and living with it.

How do you see CysticFibrosis.com evolving?

We have set up patient retail in the last few months on our Medrise.com site. This is a store where patients with cystic fibrosis can find many of the products and devices they use every day, as well as interact with manufacturers of CF products. We are also in the process of initiating a Pilot study to learn about Home Spirometry and CF patients.

Concerning genetics and the Human Genome Project, Cystic Fibrosis patients are aware of their mutations. They often self group by mutation, accordingly on our site. We are moving to help them form guilds based on their mutations. From there, they can map their genomes, compare and contrast disease progression, discuss their treatments with each other and their Health Care Providers and work directly with researchers.