In 2014, CreakyJoints created a Patient-Powered Research Network called ArthritisPower™ with support from the Global Healthy Living Foundation and Patient-Centered Outcomes Research Institute (PCORI).
ArthritisPower is an innovative, nationwide research registry of patients with rheumatoid arthritis and spondyloarthritis (e.g., psoriatic arthritis, ankylosing spondylitis). The goal of the registry is to make patient care and management more effective by understanding and analyzing the patient’s condition on a day-to-day basis.
ArthritisPower is led by a Patient Governor Group, who identify research needs for study development and prioritize research requests from the CreakyJoints patient community.
ArthritisPower is part of PCORnet, the National Patient-Centered Clinical Research Network, a large, highly representative, national network for conducting clinical outcomes research.
How does ArthritisPower work?
Using a web-based and mobile application, the goal of ArthritisPower is to collect health data from tens of thousands of arthritis patients to support future research to compare treatments, identify new ones, and, perhaps, find elusive cures.
To learn more about ArthritisPower, www.arthritispower.org.
Who Funds ArthritisPower?
PCORI (Patient-Centered Outcomes Research Institute) is a nonprofit research-based patient advocacy organization located in Washington D.C. Dedicated to providing quality evidence to help patients, caregivers, clinicians, employers, insurers, and policy makers, PCORI uses unique and essential research methods to improve healthcare by prioritizing to the needs of the patient.
Funded through the “Patient-Centered Outcomes Research Trust Fund (PCOR Trust Fund), established by Congress through the Patient Protection and Affordable Care Act of 2010, PCORI is able to conduct quality patient-led research. The PCOR Trust Fund receives income from three funding streams: appropriations from the general fund of the Treasury, transfers from the Centers for Medicare and Medicaid trust funds, and a fee assessed on private insurance and self-insured health plans (the PCOR fee). PCORI receives 80 percent of the monies collected by the PCOR Trust Fund to support its research funding and operations. The Department of Health and Human Services (HHS) receives the other 20 percent of trust fund monies to support dissemination and research capacity-building efforts (the majority of HHS’s share goes to the Agency for Healthcare Research and Quality).”
Aside from ArthritisPower, PCORI funds 32 other Patient Power Research Networks across the country.
ArthritisPower Patient Governors
ArthritisPower Patient Governors consists of 11 patients representing the diverse backgrounds, perspectives and experiences of the CreakyJoints Community.
ArthritisPower Research Partners
The ArthritisPower Research Advisory Board (RAB) is a representative stakeholder group that provides advice about research implementation and sustainability of ArthritisPower. Members meet quarterly, including at the annual American College of Rheumatology (ACR) meeting. The partners are made up of rheumatology researchers, clinical rheumatologists, industry partners and a Patient Governor.