At the close of this initial phase 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 Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS) and/or Axial Spondyloarthropathy (axSpA).  However, as the project continues (ACT II) it will expand to also include patients diagnosed with Rheumatoid Arthritis (RA) and/or Systemic Lupus Erythematosus (SLE).

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:

  • Investigating current researcher & industry-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.  

ACT II expansion will include:

  • Continued Hub development, with a strong focus on continued flexibility & engagement modeling.  It will also expand to include RA and SLE patients.
  • Development of a databank, built and housed by the National Data Bank for Rheumatic Diseases (NDB). The databank will help IFAA establish patient longevity profiles so that we can identify additional patterns for treatment decision making and adherence.
  • Surveys developed from the focus group discussions will be launched to a global patient population, creating 100% patient-centered material. 

An overview of the act pilot project

  • Establishment of PRP Leadership Groups (Nonprofits, Industry, Researchers).  Instead of duplicating past or current efforts to involve patients in research, IFAA will unite nonprofits, industry, & research institutes to ensure existing PRP efforts are built upon and not duplicated.
  • Pre-Clinical through Clinical Trial phase patient-researcher-industry collaboration exploration, working towards identifying existing gaps where patient input could produce value.
  • Developing patient research education programs In an effort to teach interested patients more about research. In 2018 we will launch the training program for patients interested in being connected with research teams looking for patient advisors.  
  • Addition of Rheumatoid Arthritis (RA) and Systemic Lupus Erythematosus (SLE) 



your voice matters

act ii: building the community team in 2017

ACT takes patient involvement to a whole new level