|by Sharon J. Glazer, MPH, Editor, Academics@Baystate newsletter | November 01, 2011
"Advocacy groups can make research more
relevant and increase participation in trials."
—Dr. Grace Makari-Judson, Co-Director of the
Rays of Hope Center for Breast Cancer Research
"Advocates help put a face on breast cancer research for investigators."
The new Rays of Hope Center for Breast Cancer Research (ROH CBCR) wants to make sure their research is relevant and focused, especially because they are getting funding from the community—the Rays of Hope Foundation has awarded them $1.5 million over 5 years.
Advocacy-Driven Research Brings the Community to the Table
Co-Directors Grace Makari-Judson MD, Medical Director of Baystate's Comprehensive Breast Center, and Joseph Jerry PhD, Science Director at Pioneer Valley Life Sciences Institute (PVLSI), want the ROH CBCR to become a model for advocacy-driven research.
So, they have set up a research advocacy group to help them establish a research agenda based on local priorities—such as discovering why the average age of breast cancer onset locally is 10 years younger than it is nationally.
Advocacy Group Is Already Making a Contribution
The first meeting of the advocacy group was in early October. They reviewed the consent form for a breast research registry. "They had some terrific comments!" said Makari-Judson. "They suggested adding a diagram to the text of the consent form to make it easier to understand. They were very supportive of the registry idea."
"Money is raised in this community, the research is done in this community. To close the loop, our research advocacy group links the investigators to the community. It comes full circle."
The advocacy group has 6 members—all cancer survivors—some of whom have participated in clinical trails, and all of whom have been active in the community. The term length is 3 years with a maximum of 2 terms.
"We have a very high-energy group of women who know about breast cancer fundraising, know what we have to offer here, and are very motivated. I'm really looking forward to working with these women."
Advocates Are More Than Advisors
Whereas patient advisory committees act as liaisons between patients and researchers, advocates are in partnership with researchers.
Advocates commonly drive the questions researchers try to answer, provide a better understanding of the patient population to be studied, assist in recruiting patients into trials, and suggest ways to improve the clinical trial experience for participants.
According to Dr. Makari-Judson, "The goal of our advocates is to to accelerate and focus research ideas. Their role is to review research ideas to ensure that they are relevant, patient materials to be sure they clear, and help devise strategies to encourage research participation in community."
To integrate the input of the advocacy group into the research process, 2 of the advocates also attend the ROH CBCR Research Review Board meetings. The research review board reviews studies prior to submitting them to the IRB for approval.
Research Advocacy Groups Are an Emerging Trend
"Having an advocacy group makes you more competitive for funding," reports Makari-Judson. "Grant-making organizations are increasingly asking whether research programs are incorporating an advocacy group that has a role in reviewing research ideas."
Many research programs have started to involve advocates in the research process, including the Department of Defense Cancer Research Program and Susan G. Komen for the Cure.
Advocates are also being included on the review panels of federal agencies such as the National Cancer Institute’s CARRA (Cancer Advocates in Research and Related Activities) and the Institute of Medicine.
Will the Advocacy Group Make a Difference?
Forming a research advocacy group is a somewhat novel approach at Baystate. "We are still learning what the best role of the advocacy group is going to be," says Makari-Judson.
They plan to evaluate the contributions of the advocacy group by assessing the satisfaction of research study participants, their success in enrolling patients in research, and their ability to get outside funding.
ROH CBCR is a Baystate—UMass Partnership
The Rays of Hope Center for Breast Cancer Research is a collaboration between clinicians at Baystate and scientists at UMass Amherst, and will be located at PVLSI.
Baystate physicians who are members of the ROH CBCR Research Review Board include Richard Arenas, Wilson Mertens, James Mueller and Jay Steingrub.
Other Baystate physicians involved in breast cancer translational research within the ROH CBCR include surgeons Richard Arenas and Holly Mason, pathologists Giovanna Crisi, Q. Jackie Cao and Christopher Otis and endocrinologist Sabyasachi Sen.
This article appeared in the November 2011 issue of the Academics@Baystate newsletter .