Abstract

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

Patient. 2021 Apr 27;1-12. doi: 10.1007/s40271-021-00515-1. Online ahead of print.

W Benjamin Nowell 1, Peter A Merkel 2, Robert N McBurney 3, Kalen Young 4, Shilpa Venkatachalam 5, Dianne G Shaw 4, Angela Dobes 6, Emily Cerciello 6, Laura Kolaczkowski 3, Jeffrey R Curtis 7, Michael D Kappelman 8

 
     

Author information

  • 1Global Healthy Living Foundation, 515 N. Midland Ave, Upper Nyack, NY, 10960, USA. bnowell@ghlf.org.
  • 2University of Pennsylvania, Philadelphia, PA, USA.
  • 3Accelerated Cure Project, Waltham, MA, USA.
  • 4Vasculitis Foundation, Kansas City, MO, USA.
  • 5Global Healthy Living Foundation, 515 N. Midland Ave, Upper Nyack, NY, 10960, USA.
  • 6Crohn's & Colitis Foundation, New York, NY, USA.
  • 7University of Alabama at Birmingham, Birmingham, AL, USA.
  • 8University of North Carolina, Chapel Hill, NC, USA.

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.

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