Cancer Survivor Research from Georgia CORE

When companies are researching a new service or product, they get detailed input from consumers to understand their perspective. Fairly recently, interest in the patient perspective has become important to healthcare researchers. Once regarded as “subjects” who had research performed on them, patients are now contributing across the spectrum of clinical research development, including in the design and planning of research protocols, selection of outcomes and endpoints, development of recruitment and retention strategies, and dissemination of research results.

The Georgia Center for Oncology Research and Education (Georgia CORE) has engaged a collaborative team of health care professionals, researchers and 9 cancer survivors to design research relevant and meaningful to the person who would ultimately benefit most: the survivor. Funded by the Patient Centered Outcomes Research Institute, (PCORI), the community-based organization has been working since 2015, building a team that is developing a comparative effectiveness research study that would merit significant research funding.

Angie Patterson also knows, from personal experience, that the cancer journey is not over when you are labeled a “survivor.” Her battle with breast cancer changed her career path, and now, as, Vice President of the Georgia Center for Oncology, Research and Education, she co-leads the PCORI project. “As cancer survivors, we are transforming the research development process. We are not directed by sponsors and investigators, but rather driven by the needs of cancer survivors and their caregivers,” she says. “Cancer makes you step back and look at your life. As survivors, advocacy helps us move forward. We have made a conscious choice to take responsibility for improving survivorship for those who share this difficult journey. Together, we will make a difference.”

Websites: GeorgiaCORE.org and GeorgiaCancerInfo.org