- 2013: PCORnet PCORnet is a national resource that offers the kind of research ecosystem that has long been pursued: a fully integrated network where vast, highly representative health data, research expertise, and patient insights are built-in and accessible from the very start. The infrastructure of PCORnet is well established, meaning that the community knows how to maximize the value of these connections to deliver fast, trustworthy answers that advance public health. pcornet.org – The era of big data, loosely defined as the development and analysis of large or complex data sets, the Patient-Centered Outcomes Research Institute (PCORI) The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policymakers make better-informed health decisions.
www.pcori.org establishes PCORnet, bringing new opportunities to empower patients and their families to generate, collect, and use their health information for both clinical and research purposes. Through PCORnet, a “network of networks” was established– Patient-Powered Research Networks (PPRNs), built and governed by stakeholder groups focused on specific conditions and community interests. Learn more about PPRN’s
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Two rheumatology specific PPRN’s were developed, including:
- 2015: ArthritisPowerVisit the ArthritisPower.org website for products and/or info about how to get involved. led by CreakyJointsCreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. CreakyJoints is a part of the non-profit Global Healthy Living Foundation, which receives funding from grants and sponsorships from pharmaceutical manufacturers, private foundations, and government-sponsored research grants. They frequently collaborate on research with major research institutions and universities.
creakyjoints.org. ArthritisPower is a non-profit, patient-inspired, and patient-managed research initiative that helps patients make a difference in the fight against arthritis and related conditions. View ArthritisPower overview, includes links to publications. - 2015: Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) PARTNERS is a PPRN linking patients, family members, caregivers, researchers, healthcare providers, and other people interested in pediatric rheumatic diseases. Through PARTNERS, patients, family members, and other caregivers are able to share research ideas, work on proposals, and join study teams. www.arthritis.org/science ) – led by healthcare providers, Childhood Arthritis and Rheumatology Research Alliance (CARRA)Childhood Arthritis and Rheumatology Research Alliance (CARRA) was founded by a small group of pediatric rheumatologists who aimed to create an investigator-led collaborative research network by establishing a registry. The information is provided by the medical team and by patients and their families. The registry was created to monitor the long-term safety of the medications used to treat pediatric rheumatic diseases.
carragroup.org/, the US Arthritis FoundationThe Arthritis Foundation boldly pursues a cure for America’s #1 cause of disability while championing the fight against arthritis with life-changing resources, science, advocacy, and community connections. https://www.arthritis.org/, Friends of CARRA, the Lupus Foundation of AmericaLupus Foundation of America’s mission is to improve the quality of life for all people affected by lupus through programs of research, education, support, and advocacy.
www.lupus.org/, and a quality-improvement learning network (Pediatric Rheumatology Care and Outcomes Improvement Network, or PR-COIN)Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) works to improve outcomes and provide safe, effective, efficient, timely, patient-centered, and equitable care for all children with rheumatic conditions. Our goals are to increase remission and clinically inactive disease rates among children with JIA, improve quality of life including optimal physical function and pain, and support families in managing their child’s condition.
https://pr-coin.org/. View summary overview of PARTNERS. - 2015 PCORnet Assessment: Report evaluating the strengths and weaknesses of the initial phase dedicated to building its governance, technical, and research infrastructure. View report .
CoPI: Patient-Centered Outcomes Research (PCOR), co-production of stakeholder groups, patient-powered networks
Tools: Reports – patient research engagement
Context: Registries, patient-powered registries, children