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 initial planning project aimed to test & facilitate innovative collaboration strategies between patients, researchers & industry to improve treatment outcomes and better utilize research dollars.

The project centered on engaging a larger, more realistic sample of patients – instead of only including the typical patient advocate usually “at the table”, and evaluating methods that put patients in leadership roles with research experts as the advisors.  While the initial intent was to focus on enhancing collaboration in early drug development, non-pharmacologic research was studied due to its’ historical relevance to original engagement methods and a strong patient-reported desire to utilize both pharmacologic and non-pharmacologic therapies in disease management.

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).

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

Learn more about the ACTpatient leaders and expert advisors.

act ii: building the community team in 2017

ACT takes patient involvement to a whole new level