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The case management model is a multidisciplinary approach that involves healthcare professionals from diverse disciplines, such as physicians, nurses, therapists, social workers, and pharmacists, working collaboratively to address the various needs of patients. Each healthcare professional brings unique expertise and perspectives, contributing to a more comprehensive understanding of the patient's condition and tailoring treatment plans accordingly.
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An Opportunity to Harmonise the Approach to Patients' Care Pathways for Rare and Complex Diseases: RarERN Path™.

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Summary

Healthcare organization is crucial for patient care, especially for rare diseases (RDs). The COVID-19 pandemic disrupted care, highlighting the need for robust organizational models like RarERN Path™ for European Reference Networks (ERNs).

Keywords:
RarERN Path™healthcare systemorganisation of carepatients' care pathwaysrare diseases

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Area of Science:

  • Healthcare Management
  • Public Health Policy
  • Patient Care Coordination

Background:

  • Healthcare organization is fundamental for appropriate patient care delivery.
  • The COVID-19 pandemic significantly disrupted healthcare systems, impacting chronic condition management.
  • Rare diseases (RDs) already face diagnostic and care access challenges, exacerbated by the pandemic.

Purpose of the Study:

  • To develop organizational reference models for patient care pathways (PCP) in rare diseases.
  • To leverage the European Reference Networks (ERNs) framework for improving RD care.
  • To establish a patient-centered approach involving multiple stakeholders.

Main Methods:

  • Creation of a structured methodology for designing PCPs.
  • Development of the RarERN Path™ reference model.
  • Involvement of diverse stakeholders including patients, healthcare professionals, and managers.

Main Results:

  • A methodological approach was established for creating organizational reference models for RD PCPs.
  • The RarERN Path™ methodology emphasizes expertise sharing and a patient-centered approach.
  • Stakeholder involvement is identified as crucial for strategic planning and emergency preparedness.

Conclusions:

  • Effective healthcare organization is vital for ensuring continuity of care, particularly for rare diseases.
  • The RarERN Path™ methodology provides a framework for developing robust patient care pathways within ERNs.
  • Multistakeholder collaboration is essential for resilient healthcare systems that can manage emergencies and ensure consistent care for rare disease patients.