Background:

Providing information to patients and carers contributes to stroke unit efficacy and enhances knowledge of stroke care. Consumers have expressed dissatisfaction with the information and advice received about disease, social services and available financial supports (O'Mahoney 1997, Italian Focus Group 2000). Successful information and education strategies have not yet been identified.

Objectives:

- To encourage consumers to give their perspective, to collaborate on disease management, to decide the healthcare priorities and to get involved in patient-oriented research.

- To encourage health providers and researchers to endorse consumer feedback and to take into account consumer priorities in clinical management and research.

Methods:

The Cochrane Neurological Network works to communicate the results of research throughout the dissemination of
neurological reviews and works to promote the evidence-based approach. It organised a national meeting in Italy to discuss with consumers of the national stroke charity ALICE the results of the Cochrane systematic review "Information provision for stroke patients and their caregivers". The feedback was systematically evaluated.

Results:

The Cochrane Neurological Network showed both advantages of providing information and education, and limits due to the variable quality of included trials and the wide range of outcome measures used. Consumers were concerned by scarce patients' and carers' points of view considered. A prompt ongoing collaboration between consumers and health providers was established. Consumers produced informative providers for the local stroke unit, contributed to local and national guidelines, produced booklets on healthcare services and contributed to clinical research.

Conclusions:

Agreement between consumers and health professionals, whose concerns and priorities for treatment and care are so different was the main result of this experience. This liaison could help to improve the quality of life of patients and carers, increasing quality of services and implementing patient-oriented research.