What is Patient-Centered Research?
In 2014, CreakyJoints created a Patient-Powered Research Network called “Arthritis Power ™” with support from the Global Healthy Living Foundation and Patient-Centered Outcomes Research Institute. CreakyJoints’ innovative, nationwide research registry of patients with rheumatoid arthritis and spondyloarthritis (e.g., psoriatic arthritis, ankylosing spondylitis) is led by a Patient Governor Group with input from the wider CreakyJoints community, putting patients at the center of all research conducted with the Arthritis Power registry.
What is PCORI?
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).”
PCORI has teamed up with CreakyJoints and researchers at the University of Alabama at Birmingham to help provide the arthritis community with the most accurate research information. ArthritisPower, creatively nicknamed after the Arthritis Partnership with Comparative Effectiveness Researchers, is a smartphone app centered around arthritis research by patients, for patients. The goal of ArthritisPower is to make patient care and management more effective by understanding and analyzing the patient’s condition on a day-to-day basis.
Aside from CreakyJoints and the Global Healthy Living Foundation, PCORI is able to fund 32 other Patient Power Research Networks across the country by a $141.3 million award approved by PCORI’s Board.