Nobody has a lock on the solutions here and opinions from all sides are welcome. Personally, I love the name of Forum One’s series: “Shovel-ready online civic projects.”

Also, improved service provider data needs to be substantially improved as well. It’s difficult to find out accurate hours, locations, insurance accepted, etc. I wrote a blog post about my frustrations. (Caveat, I’m not an e-health researcher, so my prescriptions may be someone what half-baked. unoriginal). I suspect that my obsevations aren’t all that original. Here’s my blog post, for your interest:
http://bit.ly/4bzckr

It reminded me of Josh Seidman’s post, Canine-Centered Care.

The irony of this thread is not lost on any of us.

It is high time to escape the tyranny of the majority, since in health and sickness, YOU are constantly in a N-of-1 trial. Those suffering from orphan diseases understand naturally this simple fact and become much more engaged in their care and equal members in their care team. It will take a while for all others patients to understand they are in a similar predicament.

It’s good news for people with PA, as very little research has been done on this condition since B12 was first discovered and synthesised over 50 years ago. The internet and the collaboration and communication it enables is helping people with PA regain their lives.

Honestly, I think this story is just one of hundreds that could be told about participatory medicine + health data rights. Here’s another one:

How to Make Health Care Remarkable – the @ePatientDave Interview

And hey, here’s a whole *journal* of stories

http://jopm.org/index.php/jpm

Seriously, the interview was excellent.

For active contributors, the Pareto rule is imperfect and misleading. In fact less than 20% are vocal but a much bigger percentage participates, by reading and learning from others. We certainly do not have enough understanding at this point to be able to accurately judge the effect of vocalization vs silent participation.