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:
- Investigating current researcher-reported barriers and benefits to patient research participation.
- Testing various communication platforms that could elevate patient engagement in the research process.
- Including a larger, more inclusive sample of patients – instead of only including the typical patient advocate – and evaluated the value of patient leadership as part of the research team.
- Investigate potential pros and cons of using patient leaders in Research & Development phases of a project, with expert advisors in place to help with the design and authenticity of the research.
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.
The findings have been groundbreaking – and will be published in April of 2017 so stay tuned!
ACT will expand in 2017 (ACT II) to include Pre-Clinical through Clinical Trial phases, working towards identifying existing gaps where patient
If you are a patient diagnosed with Rheumatoid Arthritis, Ankylosing/Axial Spondylitis, Psoriatic Arthritis, and/or Systemic Lupus Erythematosus and would like to learn how to get involved in ACT II, let us know!