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.

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.

Multiple Sclerosis: UHMS Position Statement

In quick postscript to Monday's post, announcing our new multiple sclerosis page, we recommend the Undersea & Hyperbaric Medical Society's position statement to all MS patients and caregivers. And for the record, we're for evidence-based hyperbaric medicine, responsible off-label usage, and self-guided research. All at the same time.

MS: No Laughing Matter?

Don't tell Jonathan Katz, who asks: What happens when a comedian gets MS? That's long for multiple sclerosis. And this is short for an entertainment tip and O2.0 Content Alert. We've no idea what professional therapist Dr Katz thinks about hyperbaric oxygen chambers, but we'll wager it's a whole lot funnier than what we'll be posting later today. While you're waiting why don't you go subscribe to Hey We're Back, the shortest, funniest podcast in all of podcastdom.