The ARthritis Patient Partnership with Comparative Effectiveness Researchers (AR-PoWER) Patient-Powered Research Network (PPRN), nicknamed “Arthritis Power,” brings together the Global Healthy Living Foundation (GHLF), the CreakyJoints (CJ) arthritis patient community, and rheumatology researchers from the University of Alabama at Birmingham (UAB). CJ is part of GHLF, a nonprofit advocacy organization founded in 1999 by arthritis patient Seth Ginsberg with the mission to improve the quality of life for people with arthritis. In 2014, CJ developed the AR-PoWER PPRN in collaboration with comparative effectiveness researchers and informatics experts at the Agency for Healthcare Research and Quality–funded UAB Center for Education and Research and Therapeutics of Musculoskeletal Disorders with the aim of conducting patient-centered comparative effectiveness research. AR-PoWER is an innovative, nationwide research network of patients with rheumatoid arthritis and spondyloarthritis (including psoriatic arthritis and anklylosing spondylitis) that is part of PCORnet and overseen by a patient governor group. External partners include the American College of Rheumatology and CORRONA, the largest US arthritis research network with data collected by rheumatologists.
AR-PoWER has a governance structure with highly engaged patients and stakeholders who serve on the patient governor group and research advisory board to ensure participant privacy and transparency about research activities. By the end of Phase I, we anticipate successfully consenting 11,000 members into AR-PoWER. We have launched innovative online tools and a mobile application (the AR-PoWER app) to engage and educate patients and to collect information about diagnosis, symptoms, and medication. The AR-PoWER app has four key design pillars:
- patient engagement, community integration, and education;
- personal longitudinal health and medication tracking;
- healthcare decision making; and
- research opportunities.
In Phase II, we will grow to 22,000 members and further develop the AR-PoWER app to enhance patient engagement features; match tailored research opportunities to potentially eligible participants; deploy electronic consent for new trials and research studies; pilot the randomization of participants as needed for study purposes; and collect biospecimen data, if required by a study. The combination of solid governance structure with well-developed policies and procedures, an engaged patient community, collaborative relationships with PCORnet partners and external researchers, and our innovatively convenient and mobile approach to data collection make AR-PoWER a unique and powerful patient-led initiative in rheumatology research.
View more about this project on PCORnet.org.