Patient Engagement and Clinical Program Manger RUNX1 Research Program – Santa Barbara, CA - RUNX1 Research Program
The RUNX1 Research Program (runx1-fpd.org) is a nonprofit committed to finding a cure for RUNX1- FPD, a hereditary blood disorder that predisposes to leukemia. Since inception in December, 2015, the two founding-directors have funded over $4 million in cutting-edge leukemia research, gathering the most prominent hematology researchers in the world together to direct their focus to our cause. Additionally, we have worked closely with the National Institutes of Health (NIH) and the National Cancer Institute (NCI) in developing and implementing a first-of-its kind, pre-cancer, longitudinal study of RUNX1-FPD, which will track cancer progression at the molecular and cellular level from pre-leukemia to frank leukemia. We are seeking a highly skilled and organized Patient Engagement and Clinical Program Manager with exceptional communication skills to join our team and play a key role in supporting our clinical research efforts.
The Patient Engagement and Clinical Program Manager will source and engage RUNX1-FPD stakeholders to our Program, ultimately allowing us to increase the visibility of the disorder, to advocate for a greater number and reach of affected patients, and to encourage participation in a longitudinal, natural his- tory study of RUNX1-FPD patients. Stakeholders include hematology and oncology clinicians, genetic counselors and individuals, and their families, possessing a pathogenic germline mutation in the RUNX1 gene. The ultimate objective of our patient and clinician outreach initiative is to educate and engage with every RUNX1-FPD family and their clinicians worldwide.
The Manager will be a key, outward-facing representative of our Foundation, tasked with building credibility and trust externally. There are 3 primary responsibilities of the Coordinator position: (1) education of stakeholders, (2) building a community of stakeholders, and (3) encouraging participation in the NIH RUNX1-FPD Clinical Study.
- (1) Stakeholder Education: This part of the job will require developing educational content for two main audiences (patients and clinicians). The content will be used for many different purposes including digital outreach. In addition to content creation, the position will require building and executing workshops and/or meetings to ensure deep learning and propagation of information on this rare disease. Therefore, the ideal candidate will feel comfortable present- ing medical information to a diverse array of audiences (e.g. physicians, nurses, patients, caregivers, etc.). This will require frequent travel to key academic institutions and hematology/oncology conferences.
- (2) Community Building: Again, serving two audiences (patients and clinicians) primarily, the Co- ordinator will play a key role in building relationships with stakeholders but also fostering relationships among stakeholders. Intrinsic to this active relationship-building process will be the acquisition of new learnings regarding the challenges both patients and clinicians face in managing the disease. These learnings will help shape our advocacy and improve our ability to effectively lobby for our cause. One output of this community building is for the Manager to cultivate both patient and clinician leaders and champions of RUNX1-FPD.
- (3) Encouraging participation in the NIH RUNX1-FPD clinical study: Finally, essential to our mission of finding a therapy that would prevent the development of leukemia is building an under-standing of the molecular and cellular events that occur between a pre-leukemic and leukemic state. Only then can we figure out how to interrupt this process. This can only happen if we have a patient population that we can track and monitor closely over time. Effectively communicating the value of this study is paramount. The Manager will be a liaison between patients and/or clinicians and the staff at the NIH to ensure seamless coordination and communications. Success, in part, will be measured by the number of patients recruited to the study.
The Patient Engagement and Clinical Program Manager will report to the Executive Director of the RUNX1 Research Program.
- Create, develop and maintain a database of RUNX1-FPD stakeholders.
- Outreach to physicians globally to establish the RUNX1 Research Program as a trustworthy and reliable source of information regarding RUNX1-FPD, to increase the visibility of the disorder, and, therefore, to increase awareness and diagnosis figures.
- Source, connect with, and foster relationships with physicians managing current and potential RUNX1-FPD patients, as well as actual RUNX1-FPD patients and their families worldwide. This will include patients that may be interested in participating the NIH RUNX1-FPD Natural History Study.
- Develop educational content in collaboration with the Executive Director and RRP Scientific Advisers for the benefit of physicians, patients and their family members.
- Liaise and work with our marketing support systems to refine and maintain a constant and effective social media presence, engaging and responding to external inquiries on such plat- forms as Facebook, RareConnect, etc.
- Respond directly, and in a timely manner, to questions from patients and family members via email, phone, video conference, and from other online forums.
- Organize and lead workshops at relevant medical conferences and academic institutions.
- Create a Patient Advisory Board made up of 5 - 6 high-level volunteers composed of patients, caregivers, and/or family members in order to provide patient-centered guidance to the RRP.
- Develop and conduct patient surveys and focus groups to refine our educational strategy.
- Knowledge of healthcare, medical and/or oncology environment.
- Strong problem-solving, priority-setting, and decision-making skills; looks beyond the obvious and doesn’t stop at the first answers.
- Ability to manage multiple projects; to move projects forward in a timely fashion while working in a rapid-paced environment.