From awareness to involvement? A qualitative study of respiratory patients' awareness of health service change

Background Despite the policy rhetoric, patient involvement in health service decisions remains limited. Highlighted barriers include a concern that most patients are unable to see beyond personal aspects of their care in order to contribute meaningfully to health service development, and a perception that professionals do not welcome patient involvement.

Objectives We aimed to explore respiratory patients' awareness of changes in local health service provision and provide insight into health professionals' attitudes to engaging patients.

Methods Nested within an ethnographic study of health service reconfiguration, we recruited 31 patients with a range of respiratory diseases from four case study areas in England and Wales. Data from telephone interviews, illness diaries and focus groups with patients, and interviews with health professionals and managers were transcribed and analysed using the Framework approach.

Results Participants were not only aware of trends in health service provision (e. g. emergence of new professional roles, shift from secondary to primary care) but interpreted changes in the light of local and national events. Despite this awareness, none of the patients was formally involved in service development, though some contributed to local voluntary groups. Professionals generally welcomed the need for patients' views to be heard.

Discussion and conclusions Our data give grounds for optimism. Patients are aware of and interested in a broad range of health-related issues. Professionals' motivation to involve patients in service development may be underestimated. Although practical obstacles remain, our findings should encourage the ongoing search for effective models of promoting patient engagement in health-care services.