Creating a Meaningful Virtual Community

Creative use of technology can help build a more connected community. Read on to learn about the Cystic Fibrosis Foundation's innovative efforts to include more people with cystic fibrosis.

| 3 min read
Danielle-Lowe
Danielle Cipriani
Danielle-Lowe-Robot-Bruce-Laughing

The challenges that people with cystic fibrosis face are wide ranging, and we've heard from countless adults that one of the most difficult aspects of the disease is the feeling of isolation stemming from the risk of spreading certain germs among each other. We understand how important it is for the stories and experiences of people with CF to be shared, so we are trying to find innovative ways to utilize the latest technologies to include more people with CF in all that we do. While technology certainly does not solve everything, it does begin to bridge the gap.

For the past two years, our CF Adult Advisory Council has convened via video conferencing. Working with council members and others in the community, we've piloted creative and complex tools to build a more in-touch community. This includes our most recent collaborative tool -- a robot. Sounds nuts, I know, but let's face it, we didn't know we needed iPhones until we had one, right?

KC White, chair of the council, said it best during our virtual holiday party last year, “We found a way to communicate with each other and, in the process, created a meaningful virtual community.”
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This photo, taken during one of our CF Adult Advisory Council meetings, captures what we call the “Brady Bunch” screen.

Video-conferencing is now being used throughout the Foundation to bring more people with CF -- and others -- together from across the globe to provide valuable insights, join meetings and build our community.

The Foundation has been streaming more and more sessions from various events to allow people with CF, and others, to watch and be able to participate in Q&A sessions. At this year's North American Cystic Fibrosis Conference, over 20 sessions were live-streamed (register here to watch the free recordings). But we recognize that's not enough; it's equally important to ensure that people with CF are still involved in the presentations and discussions. So, the Foundation has found new ways to invite people with CF to join a conference virtually to lead and participate in these conversations.

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At our annual Volunteer Leadership Conference, we hosted a virtual panel discussion between people with CF talking about life with the disease.

Like video conferencing, live-streaming is now a vital advancement in our collaboration toolkit.

The newest program that we are piloting is bringing people with CF into various events via a mobile device -- a robot. The robot is essentially a tablet on wheels that allows the user to participate in events with mobile capabilities, such as driving to meetings and adjusting the height to “sit” or “stand” for conversations. Andy Lipman, a 42-year-old Georgia native with CF, piloted the technology for us at NACFC two weeks ago.

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Andy literally bumped into Senior Vice President of Clinical Affairs Bruce Marshall in the hallway during the conference. Andy and his copilot, daughter Avery, were testing out this latest technology while talking with Bruce about Andy’s role in the video for the third plenary focused on emotional wellness.

Andy commented, “This technology was definitely fun to use and I can see the value if we can work out some of the connectivity and noise kinks.” The robot certainly caught the attention of many attendees and allowed for a meaningful discussion. We will continue to identify more opportunities to use this new engagement tool.

These are just a few of the ways that we are using technology to build a more in-touch community, and we want to know what you think of these efforts. Do you know of any other tools that the Foundation should consider piloting?

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About the CF Foundation | Infection Prevention and Control
Danielle-Lowe

Danielle listens to and partners with people with CF and their families to create meaningful opportunities for connection. She also leads the creation of online spaces and events for people in the CF community to connect, learn, share and inspire each other. Danielle earned her B.A. in communications from American University in Washington, D.C. She currently lives in Littleton, Colo., with her husband Vince and dog Baci.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.