Here in Australia, almost all our health/disability research panels and government advisory boards include consumer representatives - sometimes as the majority of members. There is good reason for this.
Some of that thoughtful discussion on radio here in Melbourne Australia recently - audio and transcript here
http://www.abc.net.au/rn/allinthemind/stories/2009/2567806.htm
http://www.abc.net.au/rn/healthreport/stories/2009/2557968.htm
"All in the Mind" has a blog, with some more discussion.