BioNews’ Patient Forums Foster Community and Raise Awareness

BioNews’ Patient Forums Foster Community and Raise Awareness

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 just vent.

BioNews Services, a leading online health, science, and research publication company, has been rolling out its own forums, including one for spinal muscular atrophy (SMA). Moderated by patients and caregivers — nearly all of them BioNews columnists — the forums complement the company’s news and information websites, such as SMA 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 — SMA was the first — with more launching by year’s end. The plan is eventually 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.

The SMA News Today forums are a place to connect with other patients, share tips and talk about the latest research. Join today!

In addition, BioNews is working to add multimedia to each forum, including podcasts and YouTube videos. “Flash briefings” can be listened to through platforms such as SoundCloud, Spotify, and iTunes. Posted every Monday, Wednesday, and Friday, the SMA forum briefings are mainly short prerecordings of SMA News Today content, including this one about a Pennsylvania clinic for Amish and Mennonite children with SMA.

“It’s just another way that we get the information out,” Michael Morale, director of multichannel content for BioNews, said of the briefings. “You can listen in your car, or while on the go anywhere.”

Videos and podcasts contain interviews with patients, and roundtable discussions about topics such as the gene therapy treatment Zolgensma (AVXS-101).

Within each forum are categories, also known as subforums. In SMA Parents and Caregivers, for example, parents of older children can share their journey with parents of newly diagnosed children in posts such as the column by an SMA parent talking about his daughter’s changing dietary needs, and another post about potty training.

In the subforum Adults with SMA, discussion topics range from living independently to managing work and social lives, including a story about navigating an outdoor wedding, for instance, and a post by moderator Ryan Berhar about his challenging summer.

The Welcome Lounge subforum is for new members to introduce themselves and get to know other community members. Diagnosis Information and General Questions is where the newly diagnosed, and their parents and caregivers can ask basic questions about SMA, and get and lend support through the early stages. One poster, for instance, seeks information on SMA type 4, while another wants advice on cough assist machines.

Another space is called Going to College When You Have SMA. Whether they commute from home or attend school in another state, students may use this platform to share tips and ask questions. Entries include suggestions about handling exam stress and getting internships.

In Disability and Media, members can discuss how disability is presented in books, movies, television, and music. They also can discover and explore work produced by those with disabilities, including the book “Laughing at my Nightmare” (Square Fish) by Shane Burcaw, who has SMA.

The SMA Assistive Technology/Equipment subforum is for sharing information and asking questions about tools and technologies, from smart speakers to adaptive equipment for wheelchairs. Discussion subjects include anxieties related to new equipment and swimming pool lifts.

In SMA Therapy News, members can share and react to news about approved and emerging treatments, and post news stories about them. A related subforum on Spinraza (nusinersen), the disease-modifying treatment for infants and adults, is where people can ask questions and relate experiences with the therapy. A similar platform for Zolgensma includes a post from moderator DeAnn Runge about treatment accessibility.

As with many rare diseases, many people have never heard of spinal muscular atrophy. Raising Awareness of SMA is where members can exchange ideas about how to boost public understanding, share their personal stories, and discuss the implications of disease obscurity. Posts include topics such as newborn screening and navigating big events. Members may also share awareness-raising initiatives that they feel warrant support.

The Polls & Quizzes subforum poses questions about participants’ SMA type and medications they use. A subforum on SMA and Dating/Relationships touches on topics such as online dating, sexuality, and disclosing the disability to a romantic interest.

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.

Some forums also have groups. For SMA, one called Research and Development is for patients, caregivers, and healthcare professionals who wish to discuss the latest news about disease studies (such as this one) and treatments, including a potential add-on therapy, reldesemtiv. The group SMA Patients is designed to foster connection among those living with SMA. For a more private group, SMA Parents and Caregivers offers a space for connection.

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.”

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Total Posts: 85
Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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  1. dante says:

    The High Priced SMA Therapies Are Here. Now How Are People Going to Pay for Them?

    “Older patients with later-onset type III and type IV SMA may prove responsive to nusinersen as they carry more SMN2 copies, but the cost–benefit ratio is different in these populations,” according to the AAN evidence review.

    The disconnect between the FDA label and the evidence available from clinical trials presents a challenge. “It’s the pink elephant in the middle of the room,” Dr. Cohen said. “A lot of the insurance companies are arguing ‘show us the evidence that it works in the milder forms of SMA’ and it’s hard to argue when they come up with that argument.”

    David Michelson, MD, lead author of the AAN’s evidence review, has several adult patients being treated with nusinersen. “Improvements on the Hammersmith Functional Motor Scale Expanded are few and far between but patients still report an overall benefit in endurance and quality of life,” said Dr. Michelson, a child neurologist at Loma Linda University Health. “They don’t want to lose access even though they are amazed by what the drug costs.”
    https://journals.lww.com/neurotodayonline/Fulltext/2019/08220/The_High_Priced_SMA_Therapies_Are_Here__Now_How.7.aspx

    when will sma news start asking some questions regarding effectiveness and improvements?

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