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

Tara Kielmann, Guro Huby, Alison Powell, Aziz Sheikh, David Price, Siân Williams, Hilary Pinnock* (Corresponding Author)

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

7 Citations (Scopus)


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.
Original languageEnglish
Pages (from-to)321-333
Number of pages13
JournalHealth Expectations
Issue number3
Early online date28 Oct 2010
Publication statusPublished - Sept 2011

Bibliographical note

Sources of funding
National Institute for Health Research Service Delivery and Organisation Programme, London, UK. SDO/99/2005. H.P. is supported by a Primary Care Research Career Award from the Chief Scientist’s Office, Scottish Government.

We thank the Independent Steering Committee, chaired by Professor Bonnie Sibbald, John Taylor and Donna Covey for overseeing the project. Our thanks go to the patients who willingly participated in illness diaries, interviews and focus group discussions, and the clinicians who supported recruitment and provided us with space to conduct the focus group discussions,. We also thank Rosemary Porteous, the study secretary, who transcribed the data and provided administrative support throughout.


  • long-term conditions
  • patient awareness
  • patient involvement
  • reconfiguration of services
  • respiratory care


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