Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions

W. Benjamin Nowell (), Peter A. Merkel, Robert N. McBurney, Kalen Young, Shilpa Venkatachalam, Dianne G. Shaw, Angela Dobes, Emily Cerciello, Laura Kolaczkowski, Jeffrey R. Curtis and Michael D. Kappelman
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W. Benjamin Nowell: Global Healthy Living Foundation
Peter A. Merkel: University of Pennsylvania
Robert N. McBurney: Accelerated Cure Project
Kalen Young: Vasculitis Foundation
Shilpa Venkatachalam: Global Healthy Living Foundation
Dianne G. Shaw: Vasculitis Foundation
Angela Dobes: Crohn’s & Colitis Foundation
Emily Cerciello: Crohn’s & Colitis Foundation
Laura Kolaczkowski: Accelerated Cure Project
Jeffrey R. Curtis: University of Alabama at Birmingham
Michael D. Kappelman: University of North Carolina

The Patient: Patient-Centered Outcomes Research, 2021, vol. 14, issue 6, No 2, 699-710

Abstract: Abstract 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.

Date: 2021
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DOI: 10.1007/s40271-021-00515-1

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