Effective Advisory Council Collaborations: Enhancing the Impact of the ORIEN Research Protocol
Moffitt Cancer Center is one of only 47 National Cancer Institute-designated Comprehensive Cancer Centers, a distinction that recognizes Moffitt’s excellence in research, clinical trials, prevention and cancer control. Moffitt is the No. 6 cancer hospital in the nation and has been listed in U.S. News & World Report as one of the “Best Hospitals” for cancer care since 1999. Moffitt’s expert nursing staff is recognized by the American Nurses Credentialing Center with Magnet® status, its highest distinction.
Moffitt’s PFAC started in 2005 and remains a vibrant group that meets monthly to weigh in on a variety of clinical, educational, and research topics. Historically, Moffitt’s PFAC has been engaged with research projects. Since the inception of Total Cancer Care® (TCC) in 2006, the PFAC has been engaged in the evolution of this comprehensive research protocol. In 2014, Moffitt Cancer Center co-led an effort to create a national collaborative including 15 cancer centers across the nation that are part of the Oncology Research Information Exchange Network, or ORIEN. ORIEN established a Patient Advisory Council comprised of patient advocates, survivors and clinicians from each ORIEN member institution who advise ORIEN members as well as M2Gen, an informatics subsidiary that functions to coordinate data sharing and collaborative learning. ORIEN PAC’s contributions include developing a unified statement of support for ORIEN and the TCC Protocol, advising M2Gen on TCC website development and a web-based consenting tool, and contributing to the ORIEN Avatar Research Program, a program directed to learn from each patient’s journey to proactively anticipate and identify options that may benefit patients before the need has been fully revealed.
As a Project Site for Creating Capacity for Sustainable Partnerships with Patients and Families in Research, Moffitt demonstrated the benefits of integrating the collective patient and family voice to enhance cancer research by engaging their PFAC and including patient representation on the ORIEN PAC. Moffitt is leveraging existing PFAC infrastructure and involving patient advisors to strengthen individual participation related to research studies and evidence-based interventions. Learning from patients and families from diverse communities and populations provides researchers with a broader understanding required to effectively meet the treatment needs of all patients.
Additionally, over the course of the project, Moffitt noted that general researcher requests for advisor committee participation and time on the PFAC’s agenda to gather their perspectives, more than doubled. Moffitt’s PFAC members believe the increase in researcher requests is directly related to the researchers’ increased awareness and education from being involved in this PCORI project.
Team members included:
- Ashley McGee, Patient Advisor & PFAC Co-Chair
- Debbie Phillips, Family Advisor & PFAC Co-Chair
- Ron Giovannelli, Patient Advisor
- Mark Pizzo, Family Advisor
- Joyce Austin, Patient Advisor
- Bruce Mackey, Patient Advisor
- Jackie Beaushaw, Patient Advisor
- John Harrell, Patient Advisor
- Shani Parkin, Patient Advisor
- Patti Halula, Patient Advisor
- Jane Garland, Patient Advisor
- Barney Morris, Patient Advisor
- B. Lee Green, PhD, Vice President of Diversity, Public Relations and Strategic Communications
- Kim Buettner, Manager Patient Advisor & Executive Patient Program
- Odalys Capote, VP/Chief Administrative Officer, M2Gen
- Kyle Hawkins, Supervisor, TCC Operations
- Pam S. Wilson, RN, MBA, MSN, CPHRM, Program Manager, DeBartolo Family Personalized Medicine Institute
- Karenne Levy, Director of Patient Experience (former)
- Nancy Newman, Director Patient Support and Advocacy (retired)