Monographic Section

Integrated care for healthcare sustainability for patients living with rare diseases


Abstract


The increasingly complex and multidimensional care request, combined with the presence of increasingly aware and demanding patients, accentuates the need for new strategies to preserve health systems economic sustainability. Therefore, integration mechanisms reveal an essential condition for ensuring continuity of care. The paper reviews the main literature available on the integration of heal services and relates it to rare diseases. The literature identifies several system levers for the effective design and implementation of integrated care frameworks, namely: political support and commitment, governance, stakeholder engagement, organisational change, leadership, collaboration and trust, workforce education and training, patient empowerment, financing and incentives, ICT infrastructure and solutions, monitoring and evaluation system.


Keywords


Integrated care, rare diseases, organizational change, patient empowerment

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