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 muscular dystrophy (MD), a group of more than 30 inherited genetic disorders that lead to progressive weakening and loss of control in muscles. Moderated by patients and caregivers — nearly all of them BioNews columnists — these forums complement the company’s news and information websites, such as Muscular Dystrophy News Today.
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 last January — muscular dystrophy’s was launched in February — 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. Using Our Forums, for example, is kind of a platform primer, and a good place to start. Diagnosis Information and General Questions is designed for newly diagnosed individuals, and their parents and caregivers, who may need help starting their MD journey. People can ask basic questions and help each other through the first stage. Posts include those about investigational treatments like CAP-1002, being developed by Capricor Therapeutics for Duchenne muscular dystrophy, and the subject of MD and hypertension.
Adults with Muscular Dystrophy is open to those with MD who are at least 18 years old. Topics range from going to the beach in a wheelchair to getting clothing altered. On the flip side, Young Adults with Muscular Dystrophy is popular with students and young teens. There are entries about traveling abroad for school, for instance, using YouTube to discuss MD. Other posts include amusement park rides and inclusion with able-bodied peers.
The subforum Muscular Dystrophy Parents and Caregivers is a space for sharing tips and finding communal support. It’s also where veteran parents can help those with newly diagnosed children. There are posts about trusting caregivers, and what disabled children do in school emergencies. Other topics include bullying and family vacations.
Muscular Dystrophy and Dating/Relationships explores issues such as accessible weddings and introducing MD while dating online. In Mobility Aids and Medical Equipment, members can get, and offer, advice on tools to make life easier. Entries range from voice-activated electricity to adaptive controllers for gamers. Meanwhile, Muscular Dystrophy Tips, Tricks and Advice runs the gamut from booking accessible travel and gardening with muscular dystrophy, to packing for MD camp and suggestions about being a friend to someone with MD.
The subforum Muscular Dystrophy Events and Activities discusses topics such as engaging in activities using MD-affected hands, chair yoga, and the Americans with Disabilities Act. Lastly, Mental Health and Positivity is where people can help each other through the ups and downs of muscular dystrophy. Posts include disability hate speech and laughter is the best medicine.
“Sometimes people ask questions that I never heard of,” said Danielle Liptak of the forum she moderates with Leah Leilani. Liptak was diagnosed at 12 with facioscapulohumeral MD. “It’s pretty awesome because the questions have roots that just spread everywhere.”
To help generate conversation, moderators — at least two for each forum — regularly post topics within subforums. Sometimes the topic is based on a new column. Other times, it’s something about day-to-day life. Moderators also post about their own lives, for instance sharing about movies they’ve seen or their vacation photos.
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.”
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