BioNews’ PH Forum Fosters Community and Raises Awareness

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by Mary Chapman |

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Online forums have markedly altered how patients, caregivers, and healthcare professionals communicate and connect. Even when miles apart, people 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 pulmonary hypertension (PH), a rare disease relating to the lungs. Moderated by patients and caregivers — nearly all of them BioNews columnists — the forums complement the company’s news and information websites, such as Pulmonary Hypertension 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 last January — PH started last March — with more launching by year’s end. The plan is eventually to have a forum, customized by moderators, for each of BioNews’ 60-plus rare disease sites. In addition, BioNews is working to add multimedia to each forum, including podcasts and YouTube videos. Every forum requires registration and moderator approval, and offers features such as private messaging.

Join our PH forums: an online community especially for patients with Pulmonary Hypertension.

Within each forum are categories, known as subforums. In Awareness and Advocacy, for example, patients can discuss ways to raise visibility of the disorder, and how to advocate for themselves and others. Topics include educating others about PH and how to prepare for a care team appointment. Another subforum, Community Events, is a space for sharing upcoming conferences, support groups, and other events.

The subforum Dating and Relationships is for discussions related to intimacy, platonic or otherwise. For instance, there is a post about sharing living spaces with a chronically ill person, and online dating. Diagnosis Information and General Questions is for the newly diagnosed and their parents or caregivers. Members may ask and answer questions, and help one another through the first stage.

In the Diet and Nutrition subforum, patients can discuss healthful eating strategies and goals with peers, caregivers, and healthcare professionals. There are recipes and posts about, for example, body weight and image.

Exercising with PH is a platform for sharing fitness goals and challenges, particularly since disease symptoms can make exercise and routine tasks difficult. And in Mental Health, members can validate one another’s bad times, and offer support and encouragement.

There is also a subforum about Lung Transplant, where people can learn more about the process, and connect with patients and caregivers who are experiencing it. Topics include post-transplant pain and debunking transplantation myths.

Oxygen Users is for those on supplemental oxygen. Participants in this subforum may ask questions and offer tips about living more comfortably and independently on oxygen.

The subforum Pediatric PH is a space where parents of children with pulmonary hypertension can discuss concerns, get answers, and share experiences such as living with PH and autism. Because PH is sometimes caused by a disorder, or can influence onset of another disease, the forum offers PH and Co-Existing Conditions, which includes topics such as living with PH and kidney disease.

There’s also Side Effects and Symptoms, where patients can discuss conditions such as dehydration, blue feet, hair loss, and fatigue, as well as treatment side effects. There’s a subforum on Treating PH, where members can discuss approved therapies such as Adempas (Riociguat) and Treprostinil (Tyvaso/Remodulin).

Though not possible for some, many PH patients are able to work. Working with PH is a space for sharing success stories and information about workplace accommodations.

In another subforum, Upcoming Procedures, patients can post supportive messages or give updates about surgeries.

Some forums also have offshoots — public and private groups. Pulmonary Hypertension has four: Teens and Young Adults with PHResearch and Development, PH Caregivers, Family Members & Spouses, and the private group Pulmonary Hypertension Patients.

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, including Brittany Foster, also post about their own lives, for instance sharing about movies they’ve seen or their vacation photos.

”It’s been emotional to discuss my experiences with PH,” said forum co-moderator Colleen Steele, whose son was misdiagnosed for two years but, at 14, is celebrating five years since undergoing a heart and double lung transplant. “But it’s also been rewarding, especially when helping new patients.”

The forums’ framework was 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 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.”

A Conversation With Rare Disease Advocates