Posted by Robin Harrison on May 01, 1998 at 01:43:40:
In Reply to: Re: Diabetes Research Working Group posted by Dennis Jerome on April 30, 1998 at 23:21:05:
Hi Dennis,
"Were there a lot of consumers represented?"
Frankly, I felt as if Al and I wound up there by a fortunate fluke rather than consumers actually being welcome at the meetings. The DRWG population is primarily a mix of foundation members (mostly JDF, some ADA, and one or two lesser knowns), non-NIH scientists, and NIH/NIDDK brass. The Type I subgroup consisted of 3 researchers, 2 JDFers (including the incredibly rude Robert Goldstein), and a handful of NIHers. Of these, I found Doug Melton (neogenesis) from Harvard the most innovative and progressive. Another researcher was so self-promoting and dismissive of any ideas that weren't his as to be almost intolerable. I thought the NIH peeps were pretty cool- Joan Harmon, Chief of the Diabetes Research Section was there in a staff support capacity, and seemed more progressive and open than several of the non-NIH panelists.
"I understood from your last report that many groups were calling for more consumers involvement in deciding research funding by NIH. Maybe the fact that you two were there means the process is already happening."
We still got a ways to go, in my humble opinion. Most of the DRWG members are there by political appointment. A common error that resonates throughout the political/governmental hierarchies is the assumption that foundations like the ADA and the JDF represent the consumer. I'm more convinced than ever that altho they may represent some consumers, they don't represent all of us. I left the IOM review charged because I felt like this point had been clearly understood. But I did not leave the DRWG meeting with the same confidence.
I don't mean this to say that everything was bad. There were definitely some bright points too. I'm still sorting out the information overload and trying to get a balanced perspective on the whole event.
Robin