Building Real-World Evidence Infrastructure to Improve Health and Healthcare in the United States: Part III— Questions for Translational Science and Action Theory

Authors

  • Osman Nuri Yogurtcu Office of Biostatistics and Pharmacovigilance, Center for Biologics Evaluation and Research (CBER), U.S. Food and Drug Administration, Silver Spring, MD, USA
  • Laura E Gressler Department of Pharmacy Practice, College of Pharmacy, University of Arkansas for Medical Sciences, Little Rock, AR, USA
  • Jens Eldrup-Jorgensen Division of Vascular Surgery at Tufts University School of Medicine and the Society for Vascular Surgery Patient Safety Organization, Boston, MA, USA
  • Kashif Haqqi Pragmedic Solutions, Washington DC, USA
  • Colin Shepard Chief Medical Officer, Schmidt Initiative for Long COVID, Palo Alto, CA, USA
  • Orestis A Panagiotou Office of Biostatistics and Pharmacovigilance, Center for Biologics Evaluation and Research (CBER), U.S. Food and Drug Administration, Silver Spring, MD, USA
  • Santiago J Molina Department of Sociology, Northwestern University, Evanston, IL, USA
  • Philip P Goodney Section of Vascular Surgery, Department of Surgery, Dartmouth-Hitchcock Medical Center, The Dartmouth Institute, Lebanon, ME, USA
  • Ali B Abbasi Department of Surgery, University of California San Francisco, San Francisco, CA, USA
  • Brian S Anderson Chief Executive Officer, Coalition for Health AI, Sudbury, MA, USA
  • Wilbur C Hadden Department of Sociology, The Center for Innovation at University of Maryland, College Park, MD, USA
  • James E Tcheng Division of Cardiology, School of Medicine, Duke University, Durham, NC, USA
  • Julia Skapik Informatics for Health, Washington DC
  • Gregory Pappas Office of Biostatistics and Pharmacovigilance, Center for Biologics Evaluation and Research (CBER), U.S. Food and Drug Administration, Silver Spring, MD, USA

DOI:

https://doi.org/10.25259/IJTMRPH_76_2024

Keywords:

  • Evidence-Based Medicine,
  • Learning Health System,
  • Public Health,
  • Registries

Abstract

Background and Objective: Previous work in this series has introduced real-world evidence (RWE), coordinated registry networks (CRNs), and systemic, coordinated, inter-organizational networks (SCIONs) theory. The application of SCIONs theory to CRNs illuminates how their structure and function foster trust and cooperation in a network of organizations to successfully address complex problems in healthcare. This third part in the series asks questions about how SCIONs theory can benefit CRNs and how the experience of CRNs can further develop the SCIONs theory. Methods: This manuscript analyzes reciprocal relationships related to SCIONs theory and CRN practice, examining how each can be used to benefit the other. While SCIONs theory has not yet formally been used to direct the development of a CRN, future application is proposed. Conversely, we explored how the practical experiences of CRNs can inform and refine our understanding of SCIONs, including identifying areas for theoretical development and through an exploration of the current limitations of CRNs. Results: The SCIONs theory may usefully direct CRN development in key leadership areas, including increasing human capital, encouraging organizational adaptiveness, expanding institutional capacity, mobilizing political engagement, and generating cooperative behavior. CRNs, guided by SCIONs theory, can offer a pathway towards a more efficient, equitable, and learning-oriented healthcare system. A comprehensive approach proposed for CRNs may facilitate the expansion of the evaluation component in SCIONs theory. Conclusion and Implications for Translation: CRN program managers should prioritize strategic approaches that foster human capital, organizational adaptability, and institutional capacity. Government agencies may consider investments in CRN as a way to build RWE infrastructure that improves quality and efficiency of healthcare broadly. Public discourse may benefit from a clearer understanding of the role of cooperation in society to address issues that government and markets are not well suited to address. The literature on SCIONs can support the non-profit literature in the way the business literature supports the for-profit sector.

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Published

2025-12-20
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How to Cite

Yogurtcu, O. N., Gressler, L. E., Eldrup-Jorgensen, J., Haqqi, K., Shepard, C., Panagiotou, O. A., … Pappas, G. (2025). Building Real-World Evidence Infrastructure to Improve Health and Healthcare in the United States: Part III— Questions for Translational Science and Action Theory. International Journal of Translational Medical Research and Public Health, 9(Special Collection), S37-S45. https://doi.org/10.25259/IJTMRPH_76_2024

License


Copyright © 2025 Osman Nuri Yogurtcu, Laura E Gressler, Jens Eldrup-Jorgensen, Kashif Haqqi, Colin Shepard, Orestis A Panagiotou, Santiago J Molina, Philip P Goodney, Ali B Abbasi, Brian S Anderson, Wilbur C Hadden, James E Tcheng, Julia Skapik, Gregory Pappas. Published by Global Health and Education Projects, Inc., USA.

Creative Commons License

This is an open-access article distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License , which permits others to remix, transform, and build upon the work non-commercially, provided the original author is credited and the new creations are licensed under the same terms.