Introducing the Research Advocacy Network

by

Mary Lou Smith, Judy Perotti, and Elda Railey

Co-Founders, Research Advocacy Network

The next time you happen to be at a major cancer conference, a cooperative group meeting, or a clinical research session, you are likely to run into the Research Advocacy Network (RAN). 

RAN was founded in 2003 by Judy Perotti, Elda Railey, and Mary Lou Smith, when these three advocates identified a gap within the patient advocate community. After many years of working with other organizations including the Y-ME Breast Cancer Organization and the Susan G. Komen Breast Cancer Foundation, they realized that there was no organization dedicated solely to research advocacy.

Not only was there no organization focused on research advocacy, but many advocates within the cancer community were puzzled by what research advocacy meant.  Judy recalls that, “during the first year, the biggest challenge was having people understand what we were trying to do.”  But the group persevered and has been successful in its efforts to define research advocacy, which is simply patient advocacy that focuses on the research process in order to influence that research by incorporating the patient perspective.  Research advocates work alongside researchers to advance common goals, such as the development of more effective treatments for patients and disease prevention.

To that end, RAN concentrates on bringing together participants in the research process with a focus on educating, supporting, and connecting patient advocates to the larger research community. And although there are many organizations already addressing specific diseases, policy issues, cancer education or fundraising, RAN’s mission is to advance patient-focused research by fostering interactions among advocates, researchers, and organizations.

Ultimately, RAN envisions building a network of advocates to influence the design and conduct of research; equipping advocates with the scientific knowledge and experience necessary to engage in meaningful interactions with the research community; increasing the collaboration between advocates and cancer centers; and mobilizing the organization’s network to address issues central to ensuring the implementation of patient-friendly research.

While the group’s long term goals are quite lofty, RAN has made remarkable progress in the two and half years since it was founded.  Proof of the organization’s success is growing, and Judy cites that “more people now understand what research advocacy is and why it is essential to the research process.”

Historically, the patient advocacy movement has changed the face of cancer research by doubling NIH funding; assisting in the development of the innovative Department of Defense (DOD) research program; and lobbying federal and state governments for insurance coverage, routine patient care costs in clinical trials, new drugs and treatment appeals mechanisms.  Patient advocates have also provided invaluable input into selected research processes.  However, RAN believes that as the involvement of advocates in research grows, there is an increasing need for training and support to educate and empower advocates, thus enhancing their effectiveness.

To meet that need, RAN has developed several programs and outreach tools in an effort to support the advocate community’s work in research advocacy.  One such program is the Advocate Institute, which was developed to provide advocates with multiple modalities of learning in order to better understand key elements of research including the medical research system, the need for participant protections, and scientific concepts.  Since advocates are often geographically dispersed and range in their knowledge of the research system and science, the Advocate Institute provides a means of directing the passion of patient advocates for more effective interactions with researchers through curriculum, onsite presentations, and online learning opportunities.

And this year RAN launched an exciting new program called Focus on Research, a pilot program supporting 15 advocates in preparing for and attending the American Society of Clinical Oncology’s (ASCO) Annual Meeting, held in Orlando, Florida from May 13-17, 2005.  The Focus on Research course consisted of three pre-conference presentations by outstanding professionals, a dinner reception at ASCO, and two post-conference teleconference calls to share key learning.  Because the response from the participants was overwhelmingly positive, RAN is currently seeking funding for this program in 2006.

In addition, RAN has conducted numerous trainings for advocates from other cancer organizations; developed an online course aimed at improving advocates’ abilities to communicate effectively with researchers and physicians; created a workbook focusing on the importance of genomics in the medical community; and developed patient education materials on the role of tissue acquisition in advancing research.

Central to RAN’s work is a focus on collaborating with all stakeholders within the medical research community, in an effort to enhance the effectiveness of patient advocates – truly, a new way of “doing business” within the community.  One such collaboration brought together RAN, the St. Louis affiliate of the Susan G. Komen Breast Cancer Foundation, and the Siteman Cancer Center to develop an educational model demonstrating how partnerships between local advocacy organizations and cancer centers can effectively attract and train research advocates.

RAN also directs the advocate core at Indiana University’s Department of Defense Breast Cancer Center of Excellence, and is currently developing a network of advocates and advocate organizations to support the university’s research.

And beyond these special programs, RAN provides ongoing support and resources to the community through a monthly eNewsletter for advocates, companion newsletters for healthcare providers and patients, fact sheets on key research issues, and consulting and grant review for a variety of cooperative group committees, government boards, and research institutions.

When asked how RAN gets all this work done, the founders simply laugh. According to Mary Lou, their secret lies in building consensus within the organization when considering which projects to take on, and “getting more out of less” by collaborating with other organizations within the advocate community. 

They all agree that RAN’s success has made it worth the significant personal and professional effort that they have each invested – and the numbers confirm that. Currently, the organization’s constituency consists of research advocates, patients, clinicians and researchers.  At the present time RAN reaches approximately 500 active research advocates, 10,000 healthcare professionals, and 30,000 patients and general advocates.

Looking back on the past two and half years makes each of the founders feel proud of the organization’s achievements, yet still focused on the work ahead of them. All three women have found RAN’s work to be extraordinarily rewarding because as Elda says, “we are equipping advocates to advance biomedical research and ultimately help patients.”

V3N2 ESUN Copyright © 2006 Liddy Shriver Sarcoma Initiative.