A Community Team (ACT): Redefining Research, or ACT, is planning project that created new collaboration models to enhance engagement between industry, researchers, & a global pool of patients early in the drug discovery environment. ACT was one of three winners, and the only immunology winner, in Celgene’s 2015 Innovation Impact Awards.  

The main objective of ACT is to develop a platform to advance existing engagement methods between patients, industry, and researchers in order to improve outcomes and better utilize research dollars­­ in a patient population where disease experiences can vary per individual.  This initial planning project focused strongly on early drug development and treatment intervention, but future work will also include pre-clinical trial through post-market surveillance phases of the R & D continuum. A second objective is to ensure all patients have the opportunity to engage in various research initiatives with different stakeholder groups, regardless of geographic location, disease limitations, or former advocacy experience

The end goal for the ACT is to establish a robust, patient-led platform where industry, researchers, and a realistic sample of patients can collaborate in all phases of the Research and Development (R & D) continuum so that outcomes can be improved and research dollars better utilized.  Various methods of engagement will produce statistically relevant data which can be used to further research and influence public policy and will encourage patients not usually “at the table” to participate. 

Celgene Corporation was not involved in any way regarding ideas, design, or management of the ACT project and was not the only pharmaceutical company invited to participate in discussions conducted to better understand current engagement barriers. 

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. 

Learn more about the ACTpatient leaders and expert advisors.

act ii: building the community team in 2017

  • Establishment of ACTion: Global Patient Engagement Stakeholder Impact Council, which will unite multiple stakeholders internationally, across Patient-Industry-Research rheumatology sectors, to identify and solve complex community problems associated with the advancement of patient engagement in research and advocacy.  
  • 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.