In 2006 the Institute of Medicine issued a report recommending that all cancer patients receive an individualized survivorship care plan at the completion of treatment with recommendations for monitoring and maintaining their health and wellbeing. These plans vary across health care facilities. Some of the survivorship plans include information about genetic counseling and testing. The question proposed would compare whether patients who receive information about recommendations about genetic services in their survivorship plan have higher rates of genetic testing that those who do not receive this information.
Genetics is a rapidly advancing area of science and medicine. Genetic testing has become more complicated with the discovery of new genes that affect cancer risk. Guidelines recommend that people speak with trained experts known as genetic counselors before undergoing genetic testing. As the cost of genetic testing has decreased, more people are turning to health care providers without expertise in genetics for information about genetic testing and medical options for managing risk. There is a lack of research on the quality of the information and the amount of misinformation that health care providers are sharing with patients with regards to cancer genetic testing, and the best ways to assure that health care providers are following recommended national guidelines.
ABOUT's patient-driven research process, known as "GAP360" takes unanswered medical questions submitted by the community and turns them into well-defined research questions that can be answered through ABOUT research. GAP stands for Generate, Assess, Prioritize, Plan, Perform, and Publish — the steps that are involved in this process.
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ABOUT is a Patient-Powered Research Network in PCORnet®, the National Patient-Centered Clinical Research Network, an initiative funded by the Patient-Centered Outcomes Research Institute (PCORI).
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