Self-Reporting for Breast Cancer Research

Epidemiologists are looking to new online models of gathering health data directly from patients and other volunteers in the quest to better understand the causes of breast cancer and ways to prevent it.

The Health of Women (HOW) Study, a collaborative research effort between the Dr. Susan Love Research Foundation in Santa Monica, CA, and the Beckman Research Institute of the City of Hope Comprehensive Cancer Center in Duarte, CA, launched globally in October after 3 years of development and is considered to be the first international long-term cancer-related study that will track the health of participants via the Web and smartphones.

“Traditionally, epidemiologic studies and prevention research have been costly and extremely time consuming, yet these cohort studies have taught us the most about cancer etiology,” says Leslie Bernstein, PhD, professor and director of cancer etiology at City of Hope National Medical Center. “We need to find cheaper, more streamlined, and more accessible methods for gathering the information we need to test important hypotheses. An online approach that taps into social media will put us in touch with more participants, will be less expensive and more efficient, and will give us important information in real time.”

HOW Study researchers disseminate surveys that include questions about family history, diet, exercise, reproductive health, occupation, personal care products, and environmental carcinogens via e-mail and mobile platforms. The study will follow male and female breast cancer survivors to identify factors that contribute to survival and have an impact on side effects. It will also follow participants who have not been diagnosed with breast cancer, allowing insight into the causes of the disease.

Online data collection allows flexibility as research questions evolve, note the study organizers, who are encouraging other scientists to take advantage of data from the cohort through modules that can be tailored to answer specific questions. “In addition, we have created an interactive format that allows study participants to submit questions to be included in future questionnaires,” says Bernstein.