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.  The main objective of this initial planning project was to test & facilitate innovative collaboration strategies between patients, researchers & industry in order to enhance engagement, improve treatment outcomes, and better utilize research dollars.  A second objective was to engage with a larger, realistic sample of patients – instead of only including the typical patient advocate usually “at the table”, building the pool of future patient advocates and overall engagement opportunities. IFAA, an organization led by patients who have been “at the table” and who understand the physical and mental limitations associated with these diseases, led the design, research, and management with guidance from expert advisors. 

The project focused strongly on the early drug development phase of the Research and Development (R & D) continuum. Diseases included in this initial pilot project included Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS) and/or Axial Spondyloarthropathy (axSpA).  As the project continues (ACT II) it will expand to also include patients diagnosed with Rheumatoid Arthritis (RA) and/or Systemic Lupus Erythematosus (SLE) and will extend focus to include pre-Clinical Trial through Post Market Surveillance phases of the R & D continuum. ​

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.
  • Through the databank, we will begin to establish "atypical typical" patient profiling, focusing on those patients who would not usually qualify for clinical trial participation because they do not have symptoms or disease etiology similar to the general patient population. 
  • 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.  
  • Hub platform to bridge communications between Patients and Industry.   In this phase of the project, we will begin to host online advisory panel sessions in lieu of Industry relying on in-person meetings (which limit participation in numbers and to only those patients physically able to travel.)  This results in a biased sample. 


Learn more about the ACTpatient leaders and expert advisors.

act ii: building the community team in 2017