Users' involvement in the Italian NHS: the role of associations and self-help groups

The purpose of the paper is to show the importance of considering patients' and citizens' associations for understanding users' involvement in health care systems.

The paper is based on both qualitative and quantitative data on Italy drawn from various sources (national statistics, own survey data, qualitative interviews).

Although the paper avoids an excessively positive view of the success and frequency of collective patients' participation, it nevertheless shows that the Italian National Health Care System (NHS) is undergoing important changes in this regard. Voice and co-production among patients, health care services and professionals have become more common and important also because of forms of collective action. Professionals themselves often belong to or promote such associations and groups. The Italian case also shows that voice and co-production tend frequently to merge into a single complex strategy where patients' requests go along with their direct involvement in health care provision.

The study provides useful information for policy makers considering the implementation of policies that promote collective action in order to increase an active users' participation in health care.

This is one of the limited number of Italian studies which investigates users' involvement in the NHS and collective action, thus adding knowledge to the limited research in this field.