Participation and Representation in Health Policy : The Role of Health Consumer Groups, 1999

Abstract copyright UK Data Service and data collection copyright owner.The aims of this study were: to explore how a sample of national health consumer groups represents the interests of patients, users and carers within the policy process through analysing their aims, objectives and strategies; examining their internal organisation and relationship with their members and grass-roots support; investigating how professional and business interests are incorporated and financial resources are mobilised. to describe and analyse how these health consumer groups interact with central government departments and agencies, Parliament, and the media in relation to policy making. to examine alliances between specific health consumer groups and investigate the particular role of umbrella consumer organisations in promoting alliances. to assess the contribution of theoretical perspectives and models to an understanding of the role of health consumer groups and in particular to assess whether different strategies and modes of interaction are related to group characteristics.Main Topics:The dataset contains information relating to the internal structure and activities of health consumer groups in five disease condition areas (arthritis, cancer, heart and circulatory disease, maternity and childbirth and mental health). Groups with an interest in more than one of these condition areas are also included. Data are provided on their date of formation, income, membership and decision-making body. Contact with government and other stakeholders is logged, as are their views on facilitators and barriers to the policy process