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Registry stakeholders.

Anne Lübbeke1,2, Andrew J Carr2, Pierre Hoffmeyer1

  • 1Division of Orthopaedic Surgery and Traumatology, Geneva University Hospitals and University of Geneva, Switzerland.

EFORT Open Reviews
|June 19, 2019
PubMed
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Clinical registries collect real-world health data for better healthcare. Effective collaboration among patients, providers, and regulators is key to maximizing registry utility and generating actionable knowledge.

Area of Science:

  • Health Informatics
  • Public Health
  • Real-World Data

Background:

  • Clinical registries are vital health information systems designed for long-term, multidimensional real-world data collection.
  • They aim to generate actionable knowledge to address significant healthcare challenges.
  • Understanding stakeholders and their roles is crucial for registry success.

Purpose of the Study:

  • To provide an overview of clinical registries, their structure, and functioning.
  • To examine the interests and involvement of various stakeholders in registry operations.
  • To discuss challenges and strategies for optimizing registry effectiveness.

Main Methods:

  • Review of clinical registry structures and stakeholder interactions.
  • Analysis of specific stakeholder interests (patients, providers, financiers, agencies, industry, researchers, media).
Keywords:
health information systemregistrystakeholder

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  • Discussion of challenges in stakeholder engagement, cost reporting integration, and utility proof.

    • Main Results:

    • Identified key stakeholders including patients, healthcare providers, financiers, public health agencies, industry, researchers, and media.
    • Highlighted challenges in stakeholder interaction and the need to strengthen the patient's role.
    • Emphasized the importance of cost reporting for value-based decisions and demonstrating clinical/public health utility.

    Conclusions:

    • Optimal clinical registries are characterized by mission-driven, independent collaboration among stakeholders.
    • Effective registries facilitate rapid, transparent, and open-access knowledge generation and dissemination.
    • Strengthening stakeholder engagement and demonstrating utility are essential for maximizing the impact of clinical registries.