Patient Advocates: More Collaboration Needed, Risky Ventures Okay

Patient advocates from throughout California say they would like the agency over the next 10 years to do everything from curing "many of the diseases that plague society" to improving collaboration and communication among scientists.

Their sentiments were voiced at a focus group called by CIRM last month as part of its strategic planning process. Their mostly anonymous comments can be read in a 17-page summary available on the CIRM web site.

The questions posed to the focus group ranged from how does CIRM measure success 10 years out to balancing high-risk research with the go-safe-but-slow approach.

In terms of 10-year goals, one sentiment jumped out, at least to us. That was the need for more collaboration, sharing and transparency. A variation of that feeling also surfaced during a segment involving public education.

Sometimes one is given the impression that collaboration and sharing go without saying in today's world of instantaneous communications. But apparently not, in the view of a number of patient advocates.

Some of the proposed 10-year measurements of success were more specific, such as this one:

"Success would be that stem cells or their derivatives would have cured many of the diseases that plague society."

Another patient advocate suggested a 10-year goal of one approved therapeutic intervention and three advanced clinical trials.

On the subject of risk, participants endorsed using portions of CIRM's $3 billion for riskier projects, although the proposed percentage varied.

CIRM President Zach Hall commented:

"At the time of the Human Genome Project, there were two proposed approaches to sequencing the genome. Someone who advocated the approach that ultimately wasn't chosen left the NIH to set up a competing project. That was Craig Ventner. The competitive pressure he exerted caused the NIH to change its strategy and accomplish things much faster. Some say they wouldn't have done that without competition from Craig Ventner. It's true the NIH study sections put a big priority on feasibility and likelihood of return. I don't know that we look to you for an answer but we do listen for whether it's more important to have tangible progress or are we willing to risk some of the money on a gamble that may fail."

Hall also indicated that a focus group will also address the question of public education.