Online Patient Communities: Get Your HBOT On

We're noticing more patients sharing their hyperbaric oxygen therapy experiences online, and again we urge our readers and HyperbaricLink visitors to join the revolution already in progress. Offhand, we can't think of a better way, short of participating in a randomized clinical trial, for you to help yourself, help other patients, and help advance hyperbaric medicine.

PatientsLikeMe still earns our loyal fandom and high marks for data richness, substance, and openness. The site's "Hyperbaric Oxygen Therapy HBOT Treatment Report" now includes 9 patient evaluations. A start. These 9 patients have undergone HBOT for 12 different reasons, with self-reported efficacy ranging from "none" to "major."

Let's say you're not into sharing your outcomes, but chatting with other patients like you sounds appealing. Try MDJunction. We eavesdropped on a hyperbaric treatment string in the fibromyalgia support group, and elsewhere on the site you'll find snippets of conversation on other HBOT-related topics that may interest you.

Please comment below about your experience with PatientsLikeMe and MDJunction. Where else on the World Wide Web are HBOT patients talking it up? We want to know.

O2.o is the news blog of HyperbaricLink, the independent web guide to hyperbaric oxygen therapy.

Online Patient Communities: From Openness To Outcomes

How wonderful to see so many online patient communities overflowing with people, stories, and data, data, data. All this new openness, allowing real-time access to real data on real patients experiencing real-world therapies, must rank among the highest and best uses of the Internet today.

We're especially impressed with the bold attitude and steady growth of PatientsLikeMe, now 70,000 members strong in 15 disease communities. There is tremendous strength in numbers like these. Last month in JMIR, the Journal of Medical Internet Research, the company's research and development team published the results of a user survey. They found patients benefiting from each other in ways never possible before. Some switched doctors. Many started, switched, or stopped medications or changed dosages. Nearly all learned something new about their conditions and symptoms. And the scientists who follow these populations are gaining new insights that will inform new research and development for decades to come.

We cannot and should not depend on prospective, randomized clinical trials as the sole means of advancing evidence-based medicine for every innovative therapy. Observational research, using patient registries powered by the web, helps serious clinical investigators gather and analyze invaluable data on how drugs and devices actually work for larger patient populations.

We aspire to create similar opportunities for the HBOT community to openly share information on patient-reported outcomes for a range of off-label indications.

Until then we urge O2.0 readers and HyperbaricLink visitors who are currently undergoing hyperbaric oxygen therapy for chronic fatigue syndrome and fibromyalgia (almost 16,000 members) and multiple sclerosis (over 20,000 members) to please join those PatientsLikeMe communities. Go get involved, be counted, and help advance the science and practice of hyperbaric medicine.

Tell them about your hyperbaric experience. And tell them we sent you.

PatientsLikeMe: Fanned, Followed, Fast Companied

Fast Company magazine just recognized what we've long known about PatientsLikeMe, naming the company among its most innovative of 2010. Innovative indeed—and right up our alley. A beautifully conceived website "committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease," PatientsLikeMe ingeniously balances patients' desire for privacy with their need for openness.

For patients (maybe like you) this important site represents the highest and best use of the Internet we can imagine, and as it expands we're eager to see our HyperbaricLink online community participate and benefit. Especially popular is PatientsLikeMe's fibromyalgia and chronic fatigue syndrome section, some 12,000 strong and growing. But there's nobody home in the hyperbaric oxygen therapy room, which O2.0 readers will find in move-in condition. And it's free to join.

HBOT For MS In The UK

Many will take issue with our running commentary and review of the published evidence on hyperbaric oxygen therapy for the treatment of multiple sclerosis. In the UK, certainly, they'd be right to say there's nothing scant about the widespread practice and apparent benefits of HBOT for MS. For 25 years the Multiple Sclerosis National Therapy Centres have provided over 2 million HBOT sessions to 13,000 members through a network of 36 charitable clinics. The organization seems to us a model of patient power at work. And what a fine platform it would make for the multicenter clinical trial or landmark observational research the medical literature is sorely missing.