Online forums have markedly altered how patients, caregivers and healthcare professionals communicate and connect. Even when miles apart, individuals can establish supportive relationships, share experiences and information, and sometimes simply vent.
BioNews Services, a leading online health, science and research publication company, has been rolling out its own forums, including one for Friedreich’s Ataxia (FA), an inherited progressive disease of the nerves and muscles that affects about one in every 50,000 U.S. residents. Moderated by patients and caregivers — nearly all of them BioNews columnists — these forums complement the company’s news and information websites, such as Friedreich’s Ataxia News.
It’s that synergy of science and personal experience that sets BioNews’ forums apart.
“Patient forums are certainly not a new concept, but BioNews has something unique to offer our communities,” said Chris Comish, BioNews’ founder and CEO. “No other company has the ability to deliver such relevant content to our readers and use that as a starting point for driving conversation and discourse. We’ve had some really touching conversations occur, and have seen patients, particularly those newly diagnosed, find sources of hope and inspiration. It’s touched everyone involved.”
The company has introduced nine forums since January — FA launched earlier this year — with more launching by year’s end. Its plan is to have a forum, customized by moderators, for each of its 60-plus rare disease sites. Every forum requires registration and moderator approval, and offers features such as private messaging and keyword search.
BioNews is working to add multimedia to each forum, including podcasts, YouTube videos, and flash briefings.
Within each forum are categories, also known as subforums. In About Our Forum, for example, members may introduce themselves and offer ideas for topics. Adults Living With FA is where those with the disorder can discuss all manner of subjects, including how warm weather can affect symptoms, adaptive horseback riding, and FA and bladder control. It’s also where those who are recently diagnosed may get support and advice.
The subforum FA Patients Under 20 offers opportunities for young people to connect with peers on topics such as explaining FA to friends, prom season, applying to college and beach days with FA. In Relationships & FA, participants may discuss any significant relationship — and how FA impacts it — including those with spouses, romantic interests, siblings, roommates, pets, and yes, physicians.
Parents & Caregivers of Those with FA offers supportive resources, outlets and coping mechanisms, and tips for parents of children with FA. The platform also includes discussions about the best vehicle for transporting those with FA, medication, and frustrations and stress.
Service Animals for Those with FA explores the ways in which such animals can enhance lives, and present challenges. Subjects range from help for shedding hair to naming the animal and air travel. Assistive Device Usage is all about issues pertaining to equipment, such as standing frames, walkers, weighted vests, wheelchairs, assistance poles, and handlebars.
In FA Research, Scientific News & Clinical Trials, participants are welcome to share or discuss the latest FA news, and studies such as this one on FA reversal in mice, or one about FA and neurodegeneration. It’s also a space for those who are interested in or who are participating in clinical trials such as this Phase 2 (NCT02255435) evaluation of therapy candidate RTA 408 (omaveloxolone), a small molecule Nrf2 activator being developed by Reata Pharmaceuticals and AbbVie.
“It’s really great seeing how everyone is coming together to support one another, so we don’t feel so isolated,” said Frankie Perazzola, who was diagnosed with Friedreich’s Ataxia in 2015, of the forum she moderates with Matt Lafleur. “People are really looking for answers, and that’s drawing a lot of people in.”
To help generate conversation, forum moderators regularly post topics within subforums. Sometimes the topic is based on a new column or news article. Other times, it’s something about day-to-day life. Moderators also post about their own lives, for instance, sharing thoughts on movies they’ve seen or their vacation photos. Some forums also have groups, both public and private subforum offshoots.
The forums’ framework was mostly developed by Kevin Schaefer with help from the social media team at BioNews. Schaefer is the company’s community development manager and an SMA forum moderator. He’s excited about the forums, and their growth and future potential.
“It’s just really cool to see a community evolving in each of them,” said Schaefer, who has SMA type 2. “They are as much about fostering community as they are about providing information. We want to do everything we can to engage with our members.”