Introduction to advocacy
Overview
Cancer advocacy includes a range of opportunities for people to become involved with cancer issues and to contribute their time and energy to the community. Advocacy can involve passing out flyers at an event, giving a talk or writing an article about cancer, or writing a letter to elected officials asking them to support a new law. Advocates, who are often volunteers or staff for nonprofit organizations, have varying levels of training or professional expertise. There are a few formal training programs to help teach people how they can effectively participate in the following activities:
- participate in the research peer review process
- educate others or raise awareness about cancer
- provide peer support for people who have been diagnosed or otherwise affected by cancer
- contacting elected officials regarding laws relating to cancer
- improve care for patients
- reduce disparities in access to care or information
- facilitate, promote, or raise money for research
- promote patient participation in research
- disseminate research findings
Peer review
Peer review is the process by which research proposals submitted to potential funding agencies are scored to determine which ones may be funded. A panel of researchers reviews each research proposal and score it according to its scientific merits and the abilities of the research team submitting the proposal.
Many funding agencies now include consumer reviewers in the peer review process so that those who have been most affected by cancer can help determine the types of research that are funded. The consumers are not expected to understand or score the research proposals' scientific merits, but are asked to rate the proposals' relevance or importance. While consumers may not need any formal training to participate in peer review, some agencies only allow people who have been diagnosed with cancer to sit on a peer review panel. The following organizations include consumer reviewers on their peer review panels:
- American Cancer Society
- Department of Defense (DOD) Congressionally Directed Medical Research Program (CDMRP)
- Susan G. Komen Breast Cancer Foundation
The Research Advocacy Network (RAN) is a nonprofit organization devoted to consumer advocate participation in research. RAN maintains a list of consumer participation opportunities for national organizations involved in research. In addition, local funding organizations and local hospitals may need consumer input for research projects. Contact volunteer services at your local cancer center to inquire about advocacy opportunities.
Sharing your story
Personal stories about cancer can have a profound impact on an audience. Whether the goal is to educate, raise awareness, or raise funds for a cause, you can give a face and voice to cancer by sharing your personal story about how cancer affected you or your family. FORCE is always looking for people who will provide personal accounts for our Joining FORCEs newsletter. We also get frequent requests from the media for people who are willing to tell their story in print or on film and from the health care community looking for FORCE members willing to participate in presentations. If you would like to speak with the media or participate in presentations, please fill out our advocacy sign-up form.
Local cancer centers, genetic counselors and advocacy organizations often give presentations on cancer and are happy to include a personal voice. If you are interested in giving talks, start small. Write your personal story, and practice telling it to others. Contact your local genetic counselor or hospital to see if there are speaking opportunities. Consider submitting your story to your local newspaper. If you have the opportunity to mention FORCE as a helpful resource and support organization, it can help others learn about the community and the services that we provide.
Peer support
Confronting personal cancer risk can be confusing and frustrating, and sometimes it helps to speak with other women who have faced similar choices. FORCE is always looking for volunteers who are interested in staffing our toll-free helpline and reaching out to others who need support. To participate in our helpline program you need to be available at least two hours every other week and need to be willing to participate in a two hour phone training session. If you wish to volunteer for our helpline, please fill out our advocacy sign-up form and indicate that you wish to be a helpline volunteer.
Legislative issues
One aspect of advocacy includes contacting your elected officials to let them know your position on a particular legislative item that affects cancer care or research. Elected politicians care about the concerns and views of their constituents. A letter, fax, or phone call to your elected representatives may make the difference in convincing them to vote for legislation. You do not need special training to contact your elected representatives, and their contact information is readily available. The name and contact information for your Senators or Representative can easily be found based on your zip code.
See our page on current legislative action items for updates on legislative issues of interest to our community.
Distributing educational materials
FORCE has produced brochures, newsletters and other print materials about hereditary breast and ovarian cancer. If you are interested in distributing our materials in your community, fill out our publication order form.
Other websites
Cancer Advocacy Now (CAN)
A grass-roots program created by the National Coalition of Cancer Survivorship
that helps cancer patients become effective advocates on issues that
affects them.
Coalition for Genetic Fairness (CGF)
This coalition of nonprofit and for-profit groups advocates for passage of federal genetic laws prohibiting genetic discrimination.
Department of Defense (DOD) Congressionally Directed Medical Research Programs
The Department of Defense is the second largest funding agency for breast and ovarian cancer research. This page discusses consumer participation in the DOD's research programs.
Genetic
Alliance
A coalition of genetic advocacy organizations, the Genetic Alliance provides
resources and tools for families affected by hereditary diseases.
Johanna's Law Website
This website provides comprehensive information about Johanna's law and what people can do to help promote its passage.
Research Advocacy Network
A nonprofit organization dedicated to developing
a network of consumer advocates to improve patient care.
Ovarian Cancer National Alliance
An advocacy organization devoted to ovarian
cancer concerns.
National
Breast Cancer Coalition (NBCC)
A national grass-roots advocacy organization
that provides training for individuals interested in breast cancer advocacy.