Listening to the voice of the patient advocates

Guest blog by Lorraine and Chris Stiehl, CIRM Advocacy Coordinators

For those of you who follow this CIRM Blog on a regular basis, you must feel as excited as we are that progress in stem cell research is progressing at a rapid rate. We feel privileged that we are helping to coordinate the patient advocate effort for CIRM — ensuring that patient advocates across the state are “educated, excited and empowered” about stem cell research.

One of our tasks when we joined CIRM as its Patient Advocate Coordinators was to develop an understanding of what Patient Advocates and Voluntary Health Agencies wish to receive from CIRM regarding stem cell research — the “Voice of the Stem Cell Advocate.”

We began our “listening tour” by interviewing both Patient Advocates and Voluntary Health Agency Executives throughout the state — from Redding to Chula Vista and from the coastline to the Central Valley. Thus far, we have interviewed approximately 70 individuals and attended over 20 disease group meetings — asking everyone for their “wants” and “needs” from CIRM: What information would they like to receive regarding stem cell research? What can CIRM do to promote and encourage their advocacy?

Our primary focus was on listening — listening to their hopes, pains, frustrations and questions. We used the information from these interviews to describe the ideal patient advocate effort — all captured in the patient advocates’s own words. We then asked groups of advocates to organize the needs we obtained into broad categories. Through this proven, well-documented qualitative process, we created a document that includes all of the advocate wants and needs — in their words — as organized by them. We will share all of these categories with you in upcoming blogs. In this blog, we are focusing on the broad category of “Research.”

In every interview we conducted, patients, their families and caregivers, and voluntary health agency executives were hungry for more information on CIRM-sponsored research. They wish to know the goals of the research, especially research aimed at their specific disease or affliction (CIRM has disease-specific information about stem cell funding here). These advocates also hope to learn more about the clinical applications of this research — as well as how they might participate in upcoming clinical trials.

CIRM has many outreach efforts underway to educate advocates on stem cell research. For example, in recent months CIRM has sponsored “Patient Advocacy Days” at several venues across the state. Each of these meetings was focused on a specific disease or related diseases, as had been requested through the “Voice of the Stem Cell Advocate.” On May 7th, Leeza Gibbons of CIRM’s ICOC Governing Board headlined a standing-room only event at UC Irvine’s Sue and Bill Gross Stem Cell Research Center. That event focused on Huntington’s, Parkinson’s and Alzheimer’s diseases. On May 21st, Marcy Feit of the ICOC gave the keynote presentation to a capacity crowd at the Stockton Hilton. Three researchers from UC Davis and UC Merced presented on stem cell research and inflammation, a common component in heart disease and autoimmune disease. At both of these programs, the interaction between the researchers and the patient advocates was very positive and deeply motivating for all parties involved. Expect to see many more of these programs scheduled for this fall/winter.

Also, as we have traveled throughout the state presenting to voluntary health agency meetings, we have seen first-hand how the link between CIRM and the patient community is being strengthened. Through patient advocate interaction, CIRM has significantly increased the number of visits to their website — adding more subscribers to the CIRM newsletter and blog (you can sign up to receive the CIRM monthly digest or press releases here). Additionally, CIRM has authored newsletter articles for agencies, as well as provided speakers and funding for a number of voluntary health agency stem cell educational events.

As Patient Advocate Coordinators for CIRM, we look forward to continuing to work with patient advocates throughout the state to support all diseases that demand a cell-based solution such as those found in stem cell research. Please keep in touch with us!