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Updated: Jul 6, 2026

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
[Listening to the voice of the patient: an imperative. 2008 SESPAS Report]
Albert J Jovell1, María Dolors Navarro Rubio
1Director General de la Fundació Biblioteca Josep Laporte, Universitat Autònoma de Barcelona, Barcelona, España. albert.jovell@uab.es
Abstract:
To democratize health services, citizen participation should be free, informed and involve choice. To achieve this, a formal and public system of health services' evaluation is required. The present article aims to argue the need to promote the participation of patients and persons affected by disease to achieve greater democratization of health services and improve the effectiveness of healthcare. Qualitative studies and population surveys can be used to assess the extent to which greater participation is being achieved. To this end, the present article uses information extracted from distinct qualitative studies performed in Spanish patients by the team of the Josep Laporte Foundation Library since 2000. The "paradoxes" found in diagnosis allow some recommendations to be made on health policy. There is a substantial chasm between the working of the health system and citizens' perceptions, indicating the need for a communication strategy that would help the majority of citizens - and especially patients as direct users - to identify basic elements of the system. Despite state and regional legislation on patients' rights, a large proportion of patients remain unaware of these rights. This situation reveals the possible discrepancy between legislative and executive settings. The laws shaping health policy should be evaluated to consolidate democratic processes. Providing credibility and publicizing patient rights could legitimize the introduction of the need for dialogue on patients' responsibilities.
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