Global Healthy Living Foundation, 515 N. Midland Ave, Upper Nyack, NY, 10960, USA.
University of Pennsylvania, Philadelphia, PA, USA.
Patient. 2021 Nov;14(6):699-710. doi: 10.1007/s40271-021-00515-1. Epub 2021 Apr 27.
Patient-Powered Research Networks (PPRNs) are US-based registry infrastructures co-created by advocacy groups, patient research partners, academic investigators, and other healthcare stakeholders. Patient-Powered Research Networks collect information directly from patients to conduct and disseminate the results of patient-centered/powered research that helps patients make more informed decisions about their healthcare. Patient-Powered Research Networks gather and utilize real-world data and patient-reported outcomes to conduct comparative effectiveness, safety, and other research, and leverage the Internet to accomplish this effectively and efficiently. Four PPRNs focused on autoimmune and immune-mediated conditions formed the Autoimmune Research Collaborative: ArthritisPower (rheumatoid arthritis, spondyloarthritis, and other rheumatic and musculoskeletal diseases), IBD Partners (inflammatory bowel disease), iConquerMS (multiple sclerosis), and the Vasculitis PPRN (vasculitis). The Autoimmune Research Collaborative aims to inform the healthcare decision making of patients, care partners, and other stakeholders, such as clinicians, regulators, and payers. Illustrated by practical applications from the Autoimmune Research Collaborative and its constituent PPRNs, this article discusses the shared capacities and challenges of the PPRN model, and the opportunities presented by collaborating across autoimmune conditions to design, conduct, and disseminate patient-centered outcomes research.
患者主导的研究网络（PPRNs）是基于美国的注册基础设施，由倡导团体、患者研究合作伙伴、学术研究人员和其他医疗保健利益相关者共同创建。患者主导的研究网络直接从患者那里收集信息，进行和传播以患者为中心/主导的研究结果，帮助患者更明智地做出有关其医疗保健的决策。患者主导的研究网络收集和利用真实世界的数据和患者报告的结果来进行比较有效性、安全性和其他研究，并利用互联网有效地完成这一任务。四个专注于自身免疫和免疫介导疾病的 PPRNs 组成了自身免疫研究协作组织：关节炎力量（类风湿关节炎、脊柱关节炎和其他风湿和肌肉骨骼疾病）、IBD 伙伴（炎症性肠病）、iConquerMS（多发性硬化症）和血管炎 PPRN（血管炎）。自身免疫研究协作组织旨在为患者、护理伙伴和其他利益相关者（如临床医生、监管机构和支付方）提供医疗保健决策信息。本文通过自身免疫研究协作组织及其组成的 PPRNs 的实际应用来说明，讨论了 PPRN 模型的共享能力和挑战，以及跨自身免疫疾病合作设计、进行和传播以患者为中心的结果研究的机会。
