The main innovation points included:

  • Test ways to engage a global pool of patients that meet a proper sample, rather than only including Advisory Panels made up of the most educated patients (5% of population).
  • Additionally, test if a more proper patient representation/larger voice could lead to more robust ideas than from a smaller Advisory Panel
  • While most patient research partnership projects use patients as the advisors, ACT trains patients (the 5%) to take on roles usually for research professionals.  For example, patients were focus group moderators and worked side by side with an expert analyst (qualitative coding).  ACT tested if patients could successfully participate, which could significantly save research dollars.  Also, the project showed that patients can identify patterns not observed by non-patient analysts.


The project just ended its' first after uniting all major players in the patient engagement in research environment at one virtual roundtable. Next step efforts to expand the project are underway.
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In addition to our internal work, two of IFAA's Co-Founders also sit on panels that review grant requests for funding projects related to the Autoimmune Arthritis community.  Tami Caskey Brown is a contracted PCORI reviewer through 2015 and Tiffany Westrich-Robertson, CEO, has reviewed for them on several occasions, as has reviewed for the American Institute of Biological Sciences and is the second patient ever to be selected as a reviewer for the National Institute of Arthritis & Musculoskeletal & Skin Diseases (NIAMS). 

IFAA's experience in research

SNAP is a study being conducted by investigators at the University of Texas and is sponsored by the Rheumatology Research Foundation that aims to better understand social research (via Facebook and website education) in patients diagnosed with Rheumatoid Arthritis.  Site moderators are patient advocates representing the Arthritis Foundation (US), IFAA, and the Arthritis Society.

Ms. Westrich-Robertson also worked as a Qualitative Research assistant in 2015 and will complete a Specialization in Methods and Statistics in Social Sciences through the University of Amsterdam by 2017.

Clinical trial connection

IFAA's Projects:

SNAP

A Community Team (ACT)

While many organizations fund research, IFAA aims to be part of the research team.  Current trends in research do include involvement of the patient to some degree, thanks to organizations like the Patient-Centered Outcomes Research Institute (PCORI).  PCORI formed in 2010 to mandate the involvement of patients and other healthcare stakeholders and to work with researchers throughout the scientific process in order to address questions and concerns most relevant to patients. This is also called "patient-centered research".  IFAA implements what we call "patient-involved research", where the patient actually becomes part of the research team, in lieu of only as the research participant in the study.



patient involved research

Collaborative projects

early symptoms of autoimmune arthritis

In 2014, IFAA was funded by Janssen Pharmaceutical Companies to begin an investigation into patient-reported early symptoms of disease onset and progression in the following six conditions:  Rheumatoid Arthritis, Psoriatic Arthritis, Systemic Lupus Erythematosus, Adult Onset Still's Disease, Sjogren's Syndrome, and Ankylosing Spondylitis.  The primary aim of the study was to identify which symptoms were most common in each disease, then as the group as a whole, and compare the findings with existing publications to determine any differences that could contribute to delays in detection, referrals, and/or diagnosis.   Learn more

A Community Team (ACT): Redefining Research is a project that won 1 or 3 innovation in research awards in 2015 (and the only project in immunology). It was designed to gather a global pool of patients, industry and researchers to initiate discussions early in the drug discovery environment so that research ideas and dollars spent will better reflect the patient’s needs.  The program enables patients who are usually unable to participate in research discussions due to disease limitations and/or the inability to travel, to contribute through a flexible virtual platform.