The Global Healthy Living Foundation (GHLF) www.ghlf.org was recently awarded a contract from the Patient-Centered Outcomes Research Institute (PCORI) to establish a Patient-Powered Research Network Project (PPRN). As part of this project, the GHLF intends to develop sophisticated information technology tools to securely capture patients' data; collect informed consent from its membership; map data to a common data model, and exchange encrypted information with other PPRNs, as well as three additional external data sources; and establish an expanded governance structure to ensure patient privacy and transparency about research activities, involving data security, privacy, and Institutional Review Board experts. This novel and timely PPRN will augment GHLF’s already appreciable education and advocacy efforts with a greatly expanded research capacity to conduct comparative effectiveness studies in a key area deemed of major public health importance by the Institute of Medicine.
GHLF is seeking a program manager to work with the principal investigator and GHLF staff with the implementation of this project. The job can be located in New York or Washington, DC, and includes flexible office/home schedule. The program manager will serve as the main point of contact with PCORI and participate in all committees, task forces and work groups on behalf of GHLF. Additionally, this person will be tasked with the overall coordination of the project ensuring on-time deliverables, completing all administrative tasks, and meeting all project deadlines.
Candidates should have experience with managing the implementation of federally funded grants, strong communication skills, a team-player approach, and familiarity with clinical research policy including informed consent practices and privacy regulations is desired. A bachelor’s degree is required.
The Global Healthy Living Foundation is a 501(c)(3) non-profit advocacy organization, based in New York, with the mission to improve the quality of life for people with chronic illness. The GHLF accomplishes its mission by advocating for improved access to care and by educating the community about the importance of diagnosis, early and innovative medical intervention, long-term lifestyle improvement, and therapeutic compliance. Co-founded in 1999 by arthritis patient and advocate Seth Ginsberg (diagnosed with Spondyloarthropathy at age 13), the GHLF includes disease-specific communities, the most visible being CreakyJoints (CreakyJoints.org), a network of 56,000 arthritis patients and caregivers in all 50 states. GHLF’s CreakyJoints Facebook page is the most popular arthritis Facebook page in the world with millions of weekly engagements and conversations.
How to apply:
Please send a cover letter and curriculum vitae to Seth Ginsberg, President, Global Healthy Living Foundation, 515 N. Midland Ave., Upper Nyack, NY 10960. Or email to firstname.lastname@example.org.