Patient advocates are an integral part of everything we do here at the stem cell agency, helping shape every aspect of our work, from the way we operate to the research we fund.
One of the current patient advocates on our board is Dr. Francisco Prieto, and he has just written a wonderful article for the Sac Sierra Medical Society journal about Prop 71 which created the agency, CIRM, and the work that we do. It’s a great read; a powerful reminder of why we came into being and what our vision is. But it’s more than that. It’s a great insight into the role that the patient advocates play in helping us do that work, in helping us realize that vision. A link to the full issue is here. Prieto’s piece starts on page 8.
In the article Francisco says he was surprised to be asked to be part of the agency’s governing board, referring to himself as “a humble family doctor.” He is being far too modest. He may be a family physician but he is also an assistant clinical professor at the University of California Davis, and the President of the Sacramento Sierra Chapter of the American Diabetes Association.
Like every other member of our governing board, the Independent Citizen’s Oversight Committee (ICOC) he brings a wealth of experience, compassion and dedication to the role (here are bios of all board members). But he also admits to being a tad overwhelmed by some of the science that he ran into:
Even with my medical training, the scientific material I had to learn about was a bit daunting. I had no idea when I joined the board that Sonic Hedgehog is a mammalian- signaling pathway and not just a video game. Furthermore, articles about long non-coding RNAs and Notch signaling rarely made it onto my reading list.
As someone who is also relatively new to this world I completely understand how he feels. It can be intimidating to be surrounded by so many PhDs who chat about the latest scientific research the way some people discuss the latest episode of ‘American Idol’.
Francisco says with time and study he and other patient advocates became more comfortable with the material, and then he goes on to quote one of his colleagues on the board, Jeff Sheehy, about the importance of their work:
“The presence of vocal, engaged patient advocates has added an indispensable dimension to the proceedings in measuring research quality. Advocates tend to focus on a project’s ability to benefit people – not just drive scientific curiosity – which keeps even basic biomedical research grounded in its ability to produce concrete health benefits.”
Francisco ends by reminding us that one of the most important things that CIRM has done, other than funding groundbreaking research of course, is to give patients and their families a sense of hope. Our goal as always is to push for therapies and, ultimately, even cures. But between now and then, giving people whose lives are filled with fear and uncertainty a sense of hope is no small accomplishment.