e-patients are us really, but there are serious attempts to organize healthcare for all conditions, for all people, e.g Electronic Health Records. The Society for Participatory Medicine [SPM] is made up of patients, M.D.s, Ph.D.s, academics, community leaders - some of the same people who created BrainTalk and NeuroTalk.
These people are on the patients' side. I considered not saying sides, that we are all in this together, but we aren't about these issues and it wouldn't be true. They have a listserve that costs approx. $35 for one year's participation. I have learned quite a bit from the listserve but wish the urgency was more evident ...they are on our side but don't hear the clock ticking.
e-patients, through networking, can manage their own health care and they sometimes save their own lives. We were among the first participants at the original Massachusetts General Hospital [MGH] site that continues to this day to expand and provide knowledge and hope for so many. -look at how much we've learned and at the magnitude of the Pd community that has been created that literally does save our lives through hope and knowledge.
However I think the "e-patient" concept belongs to the Harvard and other people, like John Lester, who created the neurological forums and chat rooms in the mid 90s. During the last half of that decade, the online surge was set in motion like an electronic tsunami. Babyboomers were getting older and illnesses were hot topics. It was first called "patients helping patients."
Here are some websites:
The white paper is worth the read - it's on both of the above sites but e-patients.net seems more vibrant. Below is an organization seeking projects that involve patient participation.
listserve e-patient Dave has appeared on Ted Talks and started a chant that went global: ..."Let patients help"