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

Author

Listed:
  • 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)

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.

Suggested Citation

  • 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 & Michael D. K, 2021. "Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(6), pages 699-710, November.
  • Handle: RePEc:spr:patien:v:14:y:2021:i:6:d:10.1007_s40271-021-00515-1
    DOI: 10.1007/s40271-021-00515-1
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