At the close of this initial phase (February/March) the IFAA team will report all findings – including results from all qualitative & quantitative research, analysis of successes & failures of having patients in leadership roles, recommended revisions to online patient participation practices, & will suggest frameworks to best engage patient - researcher - industry collaborations in all phases of the R & D environment.
Patients involved (leading & as Hub participants) were diagnosed with PsA, AS/axSpA, and/or Undifferentiated Spondyloarthropathy). However, as the project continues it will expand to also include patients diagnosed with Rheumatoid Arthritis and/or Systemic Lupus Erythematosus.
At the close of ACT I the IFAA team will report all findings – including successes & failures of having patients in leadership roles, recommended revisions to retest procedures, & hypothesize how patient inclusion could lead to time & budget savings. It will also conclude ways patients, industry, & researchers visualize productive partnerships & will propose an expansion to test new collaboration models for the early drug development environment ( a focus of ACT) and will expand in 2017 to include Pre-Clinical through Clinical Trial phases, working towards identifying existing gaps where patient input could produce value.
The A Community Team (ACT): Redefining Research project was one of three innovation in research grant winners – and the only immunology winner - in Celgene’s 2015 Innovation Impact Awards. "ACT" aims to develop collaborative strategies between researchers, industry, and patients that can lead to improved treatment outcomes and a better use of research dollars. The initial planning project, which launched in 2016, focused on understanding patient treatment decision drivers, studying existing R & D processes which included:
ACT II expansion will include:
IFAA built on existing research findings that report what researchers believe to be primary barriers & benefits to including Patient Research Partners (PRP) on their projects. We also conducted live interviews & online surveys with various researchers around the world (some who have implemented PRP in their projects & others who did not), to identify value. Interviews were streamed live to Facebook so patients online could interact, comment, & ask questions.
Photo: ACT LIVE Patient Led Interviews: Left – Dr. John Esdaile, Scientific Director at Arthritis Research Canada, Right - Patient Advocate/AS, Charis Hill
IFAA will assess data analyzed from patient, industry, & researcher surveys, discussions during ACT LIVE, & data IFAA has learned by studying the current drug development ecosystem, then conclude next steps for ACT in 2017. In early 2017 IFAA will interview industry representatives to determine best practices for patient-industry collaboration. Following these interviews we will host a Round Table, via webinar, to include representatives from patient/nonprofit, researcher and industry communities.
Copyright 2017. All rights reserved. Information on this site is intended for informational purposes only Our foundation does not engage in the practice of medicine. Please consult a physician to obtain personal healthcare and treatment options. Tax ID: 27-1214308