The occurrence of squamous cell carcinoma of the oropharynx (SCOOP) is rapidly increasing and is predicted to outnumber cervical cancer cases in the United States by 2020. In 2012, 52,000 adults were diagnosed with head and neck cancers, composing 3 percent of all U.S. cancer diagnoses, with the majority being squamous cell carcinomas. In Tier I, we created a patient advisory council of head and neck cancer survivors and their caregivers in Michigan, which we engaged through quality improvement projects throughout the Henry Ford Health System. The council’s accomplishments include helping create a post-treatment clinic for all patients so that they have clinical support. Additionally, the council has revamped the previously established new patient resource folder to be more patient centered, complete with words of wisdom and nonclinical tips for newly diagnosed patients.
In Tier II, we plan to engage our national collaborators (both researchers and stakeholders) within the cancer research network. We will recruit national SCOOP patient advisors and together will transform our comparative effectiveness research ideas into questions with the guidance of a multidisciplinary clinical and research team. Our focus will be what matters to our patient advisors and their caregivers as it relates to survivorship and quality of life.