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 introducing its own forums, including one for pulmonary fibrosis (PF), a disease marked by scarring — or fibrosis — of lung tissues, making breathing difficult. Moderated by patients and caregivers — nearly all of them BioNews columnists — these forums complement the company’s news and information websites, such as Pulmonary Fibrosis 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 — PF was among the first — with more launching by year’s end. The 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.
The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out 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, or iTunes, or by using an Amazon Echo device. Posted every Monday and Thursday, the PF forum briefings are mainly short pre-recordings of Pulmonary Fibrosis News content, including this one about a study linking missing iron receptors and idiopathic pulmonary fibrosis (IPF).
“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.”
Within each forum are categories, also known as subforums. Using Our Forums is a good place to start, perhaps followed by Join the Discussion: Welcome to All PF/IPF Patients, where the PF community is invited to learn about and weigh in on subjects such as how the disease affects appetite and homeopathic treatments.
Newly diagnosed patients, their families, and caregivers can also find help starting their journey, support one another through the first stage, and learn what to expect at the subforum Diagnosis Information and General Questions. Discussion topics range from portable oxygen to travel insurance.
There’s a supportive subforum for Caregivers and Spouses for discussion of the emotional, social, and physical impact of caring for someone with PF, and for sharing coping strategies. There’s advice for new caregivers, for example, and a post about having a child with PF.
Clinical Trials is where members can learn which studies are recruiting patients, or where former or current trial participants can share their experiences. For instance, there’s a post about a global Phase 3 program consisting of two identically designed trials, ISABELA 1 (NCT03711162) and ISABELA 2 (NCT03733444), to evaluate the potential of novel IPF therapy candidate GLPG1690 (by Galapagos). The trials are currently enrolling.
There are also subforums pertaining to Esbriet (pirfenidone) and Ofev (nintedanib) in idiopathic pulmonary fibrosis management. There, members can join discussions about changes in taste as a possible Esbriet side effect, or about consuming alcohol while on either treatment. There’s also a post about a connection between abdominal cramps and Ofev.
In Pre/Post Lung Transplant, those who have been referred to a lung transplant program, or have received new organs, are welcome to join. There are posts about transplant aftercare, for instance, and comparing transplant centers.
There is also a platform for residents of Canada, where roughly 30,000 PF patients are being treated under the country’s universal government-funded healthcare system. Topics in Canadians Living with Pulmonary Fibrosis include cold-weather management and the health risks of smoking marijuana.
In the subforum Healthy Recipe Sharing, members share ideas for meals and drinks, as well as natural remedies for PF-related symptoms such as chronic coughs, while in Hobbies & Projects participants can share activities they’ve come to enjoy since their diagnosis.
Polls & Quizzes gives members a chance to test their PF knowledge and participate in patient polls and surveys. Employment & Pulmonary Fibrosis is for discussion of topics related to living with PF while working, with subjects ranging from dealing with workplace smokers to crafting an emergency respiratory protocol.
The subforum Pulmonary Fibrosis Awareness & Advocacy is for sharing and learning about ideas and efforts to heighten PF awareness, and for promoting advocacy. Another subforum, called Upcoming Medical Appointments: Q&As, is a space where members can connect before and after doctor appointments to seek advice or share emotions.
The last forums pertain to patient age: Living with Pulmonary Fibrosis: 50+ and Young Adults Living with Pulmonary Fibrosis (40 & Under). These are where people can connect with life-stage peers to share challenges and concerns about subjects such as end-of-life care and starting new relationships.
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.
”There’s a lot of misinformation out there, so I feel like we remedy that a bit,” said Mark Koziol, who co-moderates the PF forum with Charlene Marshall. He was diagnosed with PF in 2014, followed the next year by a lung transplant.
“Some forum members come back and say, ‘Thank you.’ Maybe they got a suggestion that worked for them. It makes you feel good,” he said.
Some forums also have groups. For PF, there’s one called Research and Development — for the entire PF community — along with two private spaces: Pulmonary Fibrosis Patients and PF Caregivers, Family Members & Spouses.
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 a spinal muscular atrophy (SMA) BioNews forum moderator. He’s excited about the forums, and their growth and 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.”