Helping Patients to Become Research Advocates

In the past, the only role for patients and non-scientists in the research process was to participate in research studies. Increasingly, researchers are recognizing the value of including input from the general population and patient communities being researched to weigh in on the shape and direction of research.

Many opportunities are available for consumers to participate on grant review panels, Institutional Review Boards (IRBs), Data and Safety Monitoring Boards (DSMBs), research advisory boards, and guideline panels. Consumers may not need formal science training to participate in research advocacy, but a certain amount of understanding about research principles, statistics, biology, and regulatory oversight can be helpful.

The FORCE Research Advocate Training (FRAT) Program is a basic educational course aimed at preparing people to become engaged in research advocacy on behalf of the hereditary breast and ovarian cancer community. The program consists of a series of expert-led webinars and live meetings on topics including basic cancer, breast and ovarian cancer, genetics, statistics, clinical trials and research, patient protection, ethics, and government regulatory processes.

To learn more and apply for the program, visit here. If you already have research knowledge or experience and want to put it to good use or have questions about the FRAT Program, please contact Lisa Schlager at: lisas@facingourrisk.org.