Patient empowerment of people living with rare diseases. Its contribution to sustainable and resilient healthcare systems

Marta De Santis, Clara Hervas, Ariane Weinman, Giulia Bosi, Valentina Bottarelli

Research output: Contribution to journalReview article

Abstract

The notion of empowerment is linked to patients' everyday life and is the base allowing for the patient engagement through which individuals and communities are able to express their needs, are involved in decision-making, take action to meet those needs. In the field of rare diseases, empowerment strategies have greater value due to low prevalence, lack of expertise, poor quality of life. Avenues to patient empowerment are: health literacy and capacity-building; shared decision-making; support to self-management. Patient empowerment is recognised as key enabler in creating sustainability as addressing challenges faced by modern healthcare systems in terms of effectiveness, access and resilience. It is recommended to develop a comprehensive EU roadmap on patient empowerment including specific recommendations, taking stock of good practices. This holistic approach should lead to a society where all actors are fulfilled human beings and unmet needs are addressed in compliance with fundamental human rights.

Original languageEnglish
Pages (from-to)283-291
Number of pages9
JournalAnnali dell'Istituto Superiore di Sanita
Volume55
Issue number3
DOIs
Publication statusPublished - Sep 26 2019

Keywords

  • Delivery of Health Care/organization & administration
  • Humans
  • Patient Participation
  • Rare Diseases/therapy

Fingerprint Dive into the research topics of 'Patient empowerment of people living with rare diseases. Its contribution to sustainable and resilient healthcare systems'. Together they form a unique fingerprint.

  • Cite this