This article describes the shared history, characteristics, capacity, and challenges of the PPRNs comprising the Autoimmune Research Collaborative (ARC) and shares practical examples of, and opportunities for, implementing patient-centered outcomes research.Įnsuring that patients, the end users of healthcare research results, are engaged in research is a foundational priority for the PPRNs that were initially established with infrastructure support from the Patient-Centered Outcomes Research Institute (PCORI), a non-profit government-sponsored organization created by the 2010 Patient Protection and Affordable Care Act. Four US-based PPRNs formed a collaborative group for discussion, planning, action, and reflection, to build on the strength of the PPRN model and address its vulnerabilities. The PPRN model has features that confer clear advantages for patient-centered outcomes research, but are also accompanied by inherent challenges. Patient-Powered Research Networks (PPRN) focusing on autoimmune conditions are well positioned for real-world patient-centered outcomes research that provides benefit to patients and other stakeholders. In principle, patient-centered outcomes research: encourages researchers to learn how treatments affect patients’ ability to manage symptoms and maintain their quality of life, often using information collected directly from patients engages patients throughout the research process by weighing in on study objectives, design, conduct, implementation, and dissemination and speeds dissemination of research findings back to patients and other stakeholders to help them to use the most up-to-date information in their healthcare decisions. Patient-centered outcomes research can be especially important to people living with immune-mediated conditions who make choices from an array of therapy options, and want to know about the experiences of similarly situated individuals receiving such therapies. Patient-centered outcomes research is characterized by engagement of patients throughout the research process and inclusion of research questions and outcomes important to patients and care partners, such as PROs and other measures related to quality of life, disease symptoms, and safety. Little longitudinal real-world evidence incorporating PROs exists to help inform patients with autoimmune diseases, and other stakeholders, about patients’ experiences while receiving immunomodulating therapies, including patterns in their disease activity and symptoms. Patient-reported outcomes constitute an assessment of symptoms or disease coming directly from the patient without interpretation by an intermediary. Such partiality for provider-sourced data may under-appreciate or under-measure patient-reported outcomes (PROs) or other patient-generated data that patients themselves deem important. Furthermore, existing clinical trial research in the field has primarily utilized data from images, laboratory tests, and clinical assessments under the control of providers. People living with autoimmune conditions frequently make critical decisions about treatments involving costly and innovative medications, often with little data comparing the treatments’ effectiveness or safety to guide such decisions. 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. 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). 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. 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 (PPRNs) are US-based registry infrastructures co-created by advocacy groups, patient research partners, academic investigators, and other healthcare stakeholders.
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