@article{865f5804ed8145dcac93dae21c03d0c2,
title = "Flexible model for patient engagement: Achieving quality outcomes and building a research agenda for head and neck cancer",
abstract = "Background: This article describes the benefits of patient-driven research in the field of head and neck oncology, reviews lessons learned from establishing partnerships with patients and caregivers, and serves as a model for further patient-driven research endeavors. Methods: Head and neck cancer survivors underwent training including that of effective communication and the basics of research methodology. They then drove the agendas for monthly meetings that included a multidisciplinary team of providers, facilitated by a physician champion (S.S.C.). Results: The advisors reported concrete areas for improvement of the clinical flow, including the formation of a dental oncology clinic and a post-treatment survivorship clinic. They also refined research topics of interest, such as treatment regret. The advisors have also driven efforts to increase public awareness and have participated in cancer symposiums and local presentations. Conclusion: Patient-driven research improves the relevance and implementation of head and neck oncology research and clinical processes.",
keywords = "cancer, engagement, multidisciplinary, patient driven, survivorship",
author = "Iwata, {Ayaka J.} and Olden, {Heather A.} and Kippen, {Karen E.} and Swegal, {Warren C.} and Johnson, {Christine C.} and Chang, {Steven S.}",
note = "Funding Information: The H&N Cancer PFAC members have been engaged in application development and grant funding to Henry Ford Health System, with $90 000 given for H&N cancer. These grants included three consecutive PCORI grants, the Eugene Washington PCORI Engagement Award, and the National Institutes of Health's All of Us Research Program funding. Kaiser Permanente Washington Health Research Institute Development Fund funded $20 000 for the project to compare patient-reported outcomes versus health system data.33 This study was inspired by the feedback given by PFAC and became the basis of an ongoing collaboration. Overall, patient advisors have been engaged in Henry Ford Health System funded grants and awards totaling more than $50 million. Funding Information: We would like to acknowledge Agency for Healthcare Research and Quality funding (R24HS022417) and Patient-Centered Outcomes Research Institute Pipeline to Proposal Awards (contract numbers C827, C908, 3411283) for their funding. Publisher Copyright: {\textcopyright} 2019 Wiley Periodicals, Inc.",
year = "2019",
month = apr,
doi = "10.1002/hed.25584",
language = "English (US)",
volume = "41",
pages = "1087--1093",
journal = "Head and Neck",
issn = "1043-3074",
publisher = "Wiley-Liss Inc.",
number = "4",
}