Introduction: Whilst recent research has focused on consumer involvement at local level in the UK, there have been few studies of the representation of user, carer and patients' interests nationally. This paper concentrates on the role of health consumer groups in representing the collective interests of patients, users and carers in the national policy process.
Methods: The research consisted of (a) a semi-structured postal questionnaire survey of 123 health consumer groups; (b) semi-structured interviews with key informants from 39 health consumer groups; and (c) semi-structured interviews with 31 policy actors.
Results: Health consumer groups were diverse in their origins, scope and structure, and undertook a wide range of activities relating to policy and service provision. Whilst around half the groups described their primary purpose as service provision, over four-fifths identified influencing policy at national level as 'very important' or 'important'. Health consumer groups had developed relationships with civil servants, ministers, MPs and peers to widen their policy objectives. Key facilitators in the policy process included experiential knowledge, relationships with policy makers and working in alliances with other health consumer groups or other stakeholders. Key barriers included problems relating to the political agenda, problems with the consultation process, lack of resources and working within a context of unequal power relationships.
Conclusion: Health consumer groups are becoming increasingly involved in the health policy process and collectively are becoming an increasingly influential stakeholder. They have a key role to play in ensuring that the patient, user and carer voice is heard in the policy process.