A flexible model for patient engagement

Achieving quality outcomes and building a research agenda for head and neck cancer

Ayaka J. Iwata, Heather A. Olden, Karen E. Kippen, Warren Swegal, Christine C. Johnson, Steven S. Chang

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
JournalHead and Neck
DOIs
StateAccepted/In press - Jan 1 2019
Externally publishedYes

Fingerprint

Patient Participation
Head and Neck Neoplasms
Research
Neck
Head
Dental Clinics
Medical Oncology
Caregivers
Survivors
Emotions
Research Design
Survival Rate
Communication
Physicians
Therapeutics
Neoplasms

Keywords

  • cancer
  • engagement
  • multidisciplinary
  • patient driven
  • survivorship

ASJC Scopus subject areas

  • Otorhinolaryngology

Cite this

A flexible model for patient engagement : Achieving quality outcomes and building a research agenda for head and neck cancer. / Iwata, Ayaka J.; Olden, Heather A.; Kippen, Karen E.; Swegal, Warren; Johnson, Christine C.; Chang, Steven S.

In: Head and Neck, 01.01.2019.

Research output: Contribution to journalArticle

Iwata, Ayaka J. ; Olden, Heather A. ; Kippen, Karen E. ; Swegal, Warren ; Johnson, Christine C. ; Chang, Steven S. / A flexible model for patient engagement : Achieving quality outcomes and building a research agenda for head and neck cancer. In: Head and Neck. 2019.
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