Monday, July 5, 2010

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.

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